School of Advertising, Marketing and Public Relations

QUT Business School

Queensland University of Technology

Engagement, empowerment and

patient generated health data

This thesis is submitted in fulfilment of the requirement for the degree of Doctor of Philosophy at the

Queensland University of Technology

By

Kara Renee Burns

RMIT Bachelor of Science (App. Sci) (Class 1 Hons)

RMIT Bachelor of Applied Science (Photography)

2017

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Statement of original authorship

The work contained in this thesis has not been previously submitted to meet the requirements

for an award at this or any other higher education institution. To the best of my knowledge

and belief, the thesis contains no material previously published or written by another person

except where due reference is made.

Kara Renee Burns November 2017

QUT Verified Signature

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ABSTRACT

Traditionally healthcare was a place of ‘doctor-knows-best’ where information asymmetry enshrined

the doctor as all-powerful and the patient as a passive recipient, typical of credence service situations.

With information availability and self-monitoring through mobile technology, patients are seeking to

become engaged co-creators and this influences health services management and may affect consumer

empowerment. It is in this context that patient generated health data (PGHD) emerges as a patient

resource that can promote co-creation (McColl-Kennedy, Vargo, Dagger, Sweeney, & Kasteren, 2012)

and patient engagement (Washington, 2014). Little scholarship has empirically evaluated the

relationship between PGHD use and patient engagement in the context of credence situations or viewed

the data from the perspective of the healthcare consumer. Indeed, an ontological framework for

describing and measuring patient engagement is still absent in extant literature (Prey et al. 2014). Hence

this research asks: How does the use of patient generated health data influence patient engagement

in the context of credence services?

Patient generated health data is any consumer-controlled clinically relevant data, collected by a

patient outside the clinical care setting (Shapiro, 2012). Research shows PGHD use improves

physiological outcomes aiding diagnosis and management (Whitehead & Seaton, 2016), promotes

psychological outcomes such as quality of life (Frühauf et al., 2012) and may affect

empowerment (Tan, Hu, & Brooker, 2014). This two-study research agenda defined engagement in this

context, explored PGHD use in clinical care for the effect on engagement, and then evaluated the effect

of PGHD engagement on empowerment. Study 1 used semi-structured interviews with 16 patients, 7

carers and 11 doctors to determine perceptions of use, experiential value and evidence for an

ontological framework when participants reflected on a vignette and personal experiences with

PGHD. Study 2 utilised a pre-experimental trial with 30 parents of children undergoing surgery

at Lady Cilento Children’s Hospital. Parent-taken photographs of children’s surgical site wounds

were used to detect post-operative infections and evaluate the effect of PGHD on engagement in

clinical care. Interviews with healthcare consumers as key informants clarified engagement in this

context. As empowerment was a key construct discovered in both studies, the relationship between

engagement and empowerment was explored with all 49 consumer interviews selectively coded using

an a priori framework.

Results show that patient generated health data engagement can be evidenced by a broad ontological

framework of physiological, cognitive, emotional and behavioural outcomes. In addition to the

known PGHD use of Improved Health Outcomes, patients used data for increased Self Perception,

Service Assessment, to develop a Preventative Mind-set, for Emotional Regulation and Emotional

Buoyancy and for Empowerment. PGHD promoted the Self-management of a Health Condition, was

used

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used to gain Social Support within the peer network, improved Partnership with Providers and

offered consumers an avenue to gain Service and Experience Optimisation. Healthcare value

literature suggests when patient generated health data is used in clinical care it has experiential

Functional, Emotional, Transactional, Social and Self-determination value. These presence of these

were confirmed through this research, as was the sixth emergent construct of Efficiency value.

All patients who created and used data in clinical care increased their engagement outcomes. When data

was facilitated by providers in clinical care healthcare consumers felt both supported, and a sense of

autonomy. Commonly health consumers experienced increased responsibility (competence) and had

more self-confidence to advocate for themselves and/or their patients to reach a desired treatment

outcome (self-efficacy). Consumers also experienced increased health system and health situation

control (control) leading to greater emotional reassurance. These concepts are an example of

psychological empowerment operationalised to this context. Additionally the use of PGHD allowed

health consumers to optimise their service experience, saving time and money, all contributing to an

increased sense of service confidence and satisfaction.

A theoretical framework for the effect of the patient generated health data engagement on empowerment

in the context of co-created health services was developed in this thesis. The relationship between the

engagement process and the empowered outcome is likely to be reciprocal (Fumagalli, Radaelli, Lettieri,

Bertele, & Masella, 2014). The process of PGHD engagement is composed of three steps: data

collection, data use and empowered outcomes for the consumer. Self-involved engagement through

creating resources and participative engagement co-created with providers using PGHD promotes

empowerment composed of competence, self-efficacy, health system control and health situation

control. However, selective coding of all healthcare consumer interviews demonstrated not all

participants experienced all the constructs of empowerment.

When unsolicited PGHD is not accepted by providers, it can be described as unsupported data

facilitation and considered provider-led co-destruction. In some cases, this will lead to dissatisfaction,

increased provider switching and service termination, however it is more likely to end in partial

empowerment or no empowerment for the healthcare consumer. Interestingly when participants only

created solicited data or only created unsolicited data, the results were similar with consumers also only

experiencing partial empowerment. However, when healthcare consumers created both solicited and

unsolicited data, and it was facilitated by providers in co-creation, full empowerment was likely with

consumers experiencing all the identified constructs of competence, self-efficacy, health situation

control and health system control.

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This research demonstrates that PGHD creation and use can engage patients, offering providers an

opportunity to co-create with consumers, promoting empowerment as a form of consumer management

within the service (Ouschan, Sweeney, & Johnson, 2000). Importantly managers have an opportunity to

develop strategies to promote solicited and unsolicited data collection and use, as it is the ‘sweet spot’

for optimal engagement and empowerment. This in turn enhances service confidence and service

satisfaction. More importantly though, if managers view patient generated health data, engagement and

empowerment from the health consumers’ perspective it can be used to assess the service through the

six identified value domains. Importantly this would encourage consumers to strive for healthcare self-

determination which is apparent when patients use complementary and alternative medicine (Dodds,

Bulmer, & Murphy, 2014) and is critical to patient empowerment when managing chronic diseases

(Aujoulat, d’Hoore, & Deccache, 2007). Not only would this improve physiological and psychological

outcomes, it would be emblematic of the paradigm shift toward patient-led medicine (Tinetti, Naik, &

Dodson, 2016) utilising consumer resources for service optimisation in order to reduce the cost of

healthcare.

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Key Words: Patient generated health data, patient engagement, psychological empowerment, credence

situations, services marketing, value co-creation, healthcare services, healthcare consumer.

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ACKNOWLEDGEMENTS

I would sincerely like to acknowledge and thank the QUT Business School for their support and

guidance over the last three years. To my wonderful supervisory team, I am honoured to have worked

with Professor Judy Drennan who accepted an invitation to become my principal supervisor after only

one Skype meeting. Judy is a maverick in all her endeavours and allowed me latitude to explore the

research terrain, balancing caref l oversight and personal independence. To Dr. Shane Mathews who

carefully considered how to discuss my topic, and whose words sat with me for weeks until I grasped

their significance. Thank you for reminding me the PhD will not be a straight forward, crisp clean

experience, and that it will never be perfect. Finally, thank you to the sage Professor Gerry FitzGerald

who was my rock when I lacked motivation, direction and passion.

Thank you Professor Rebekah Russell-Bennett who provided assistance in the early stages suggesting

I should look at triadic relationships. Thank you to Dr. Stephen Cox who advised on my methods and

to Associate Professor Glen Murphy and Dr. Dominique Greer who, as members of my internal

examination panel, provided invaluable critique. I would also like to acknowledge surgeons Dr. Craig

McBride and Dr. Bhavesh Patel who offered me the opportunity to collaborate on a clinical trial with

patients attending Lady Cilento Children’s Hospital.

Thank you to my wonderful colleagues Dr. Thamer Bazeem, Dr. Alireza Ahmadvand, Dr. Husain

Akareem, Dr. Linley Xu, Dr. Rachel Sato, Scott Murray, Aimee Riedel, Ben Sheehan and Dr.

Kathleen Chell, for supporting me during the three and a half years. We all know how difficult the PhD

can be and on those occasions when I couldn’t work something out, or lost faith in my ability you were

all there with hugs, chocolate and kind advice. I want to thank my father Mr. Fred Burns who proofed

both my confirmation and final thesis, offering encouragement for my chosen topic. Thank you to all

the admin staff who work behind the scenes in the School to make our degrees possible.

Finally I want to thank all the participants in my research who shared very personal, often traumatic and

uplifting stories of their healthcare journey. This thesis is for you and all patients who will benefit from

this research.

Professional editor, Jane Todd, provided copyediting and proofreading services, according to the

guidelines laid out in the university-endorsed national ‘Guidelines for editing research theses’.

QUT Verified Signature

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PUBLICATIONS FROM THIS THESIS

1. Burns, K., Drennan J., & Mathews S., (2017). Co-creation in healthcare services: Can

patient generated health data help? – Frontiers, New York City, USA, June 2017 (Presenter)

2. Burns, K., Drennan J., & Mathews S., (2017). Patient generated health data: Co-creation in

credence services?- QUIS, Porto, Portugal, June 2017 (Presenter)

3. Burns, K., Drennan J., & Mathews S., (2016). Medical Selfie: Co-creation in Healthcare –

Servsig, Maastricht, Netherlands, June 2016 (Presenter)

4. Burns, K. (2015). How does patient generated health data affect patient engagement and the

doctor-patient relationship? QUT Business School Colloquium, Brisbane, October 2015

(Presenter)

5. Burns, K. (2015). Digital photography and the medical selfie. Journal of Participatory

Medicine, 7(e3).

6. Burns, K. (2014). How does patient generated health data affect patient engagement and the

doctor-patient relationship? QUT Business School Colloquium, Brisbane, October 2014

(Presenter)

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TABLE OF CONTENTS

Statement of original authorship iii Abstract iv Keywords vii Acknowledgements viii Publications from this thesis ix Table of Contents x List of Tables xii List of Figures xiii List of Abbreviations xiv Glossary xv Chapter One: Introduction 1.1 Objectives 2 1.2 Theoretical Framework 2 1.3 Research Approach 3 1.4 Theoretical and Managerial Contributions 4 1.5 Overview of Thesis Chapters 4 Chapter Two: Literature and Theory Review 2.1 Patient Centeredness 8 2.2 Patient Generated Health Data 8 2.3 Consumer Engagement 19 2.4 Service Dominant Logic 27 2.5 Value 28 2.6 Value Co-creation 33 2.7 Credence Services 40 2.8 Engagement and Psychological Empowerment 47 2.9 Research Questions, Propositions and Theoretical Framework 49 Chapter Three: Methods 3.1 Research Paradigms and Approach 52 3.2 Justification for a Qualitative Paradigm 55 3.3 Study 1 Research Design Overview 56 3.4 Study 2 Research Design Overview 61 Chapter Four: Study 1 Results 4.1 Introduction 67 4.2 Overview of Sample Profile 67 4.3 Usefulness of Patient Generated Health Data 70 4.4 Patient Generated Health Data Use Attributes (A) 72 4.5 Use Summary 99 4.6 Patient Generated Health Data Value (A) 102 4.7 Value Summary 107 Chapter Five: Study 2 Results 5.1 Introduction 109 5.2 Overview of Sample Profile 109 5.3 Patient Generated Health Data Use Attributes (B) 114 5.4 Patient Generated Health Data Value (B) 120

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5.5 Patient Generated Heath Data Engagement 123 5.6 Summary: Use and Value 125 5.7 Psychological Empowerment 127 5.8 Consumer Engagement and Psychological Empowerment 128 5.9 Empowerment in Credence Services 129 Chapter Six: Discussion 6.1 Introduction 131 6.2 (RQ1) How is patient generated data used and how does it affect patient engagement? 133 6.3 (RQ2) What is the experiential value of patient generated health data in healthcare

services for a patient and how does it reflect the five domains of functional, transactional, social, emotional and self-determination value?

137

6.4 (RQ 3/4): How does patient generated health data use affect co-creation in credence services? Does involvement in resource creation and participative engagement in clinical care promote patient empowerment? If so how?

140

6.5 Resolution of the Overarching Theoretical Framework 141 6.6 PGHD as a Mechanism for Service Assessment 143 6.7 Recommendations for Measuring Engagement in this Context 144 6.8 A Framework for Integrating PGHD into Clinical Care for Managers 144 6.9 Contributions 145 6.10 Limitations 147 6.11 Future Research 147

APPENDIX A: Comprehensive Review Search Strategy 148

APPENDIX B: Foundational Premises (FP) of SD Logic 150

APPENDIX C: Resource Integration in Credence Situations Literature 151

APPENDIX D: Study 1 Interview Schedule Sample (Patient Only) 155

APPENDIX E: Codebook 1 Open Coding using Overarching Framework 160

APPENDIX F: Taking Mobile Phone Photographs using a Standardised Methodology 166

APPENDIX G: Study 2 Questionnaire 1 170

APPENDIX H: Participant Information Sheet / Consent Form / Child Assent Form 172

APPENDIX I: Study 2 Questionnaire 2 180

APPENDIX J: Study 2 Interview Schedule 182

APPENDIX K: Questionnaire Results (T1-T2 differences) 186

APPENDIX L: Codebook 2 Axial Coding for Use, Consequences and Value 191

APPENDIX M: Study 1 & 2 Engagement-Empowerment Outcomes 203

REFERENCES 206

 

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LIST OF TABLES

Table 1.1 Theoretical contributions of this thesis 5

Table 1.2 Managerial contributions of this thesis 7

Table 2.1 The provider facing implications of patient generated health data 10

Table 2.2 The consumer facing implications of patient generated health data 11

Table 2.3 Data, collection and use modality type for PGHD literature (2004-present) 17

Table 2.4 A typology of patient generated health data (2004-present) 18

Table 2.5 Fundamental Propositions of CE contextualised for Patient Engagement 19

Table 2.6 Healthcare value conceptualised into five domains 32

Table 2.7 Drivers of consumer value through the co-creation process 38

Table 3.1 Critical realism, value co-creation and the current research strategy 55

Table 3.2 Addressing validity in this research 63

Table 4.1 Study 1 individual respondent characteristics 68

Table 4.2a-j A summary of engagement outcomes with definition and identifying codes 71

Table 4.3 Evidence of functional value as coded in interviews 102

Table 4.4 Evidence of transactional value as coded in interviews 104

Table 4.5 Evidence of self-determination value as coded in interviews 105

Table 4.6 Evidence of emotional value as coded in interviews 106

Table 4.7 Evidence of social value as coded in interviews 107

Table 5.1 Study 2 individual respondent characteristics 110

Table 5.2 Study 2 participant characteristics 111

Table 5.3 Study 2 photograph characteristics 111

Table 5.4 A summary of engagement outcomes with definition and identifying codes 114

Table 6.1 Drivers of consumer value through the co-creation process 140

Table 6.2 Theoretical contributions of this thesis 146

Table 6.3 Managerial contributions of this thesis 147

 

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LIST OF FIGURES

Figure 2.1 Patient empowerment and related concepts 21

Figure 2.2 Patient generated health data as a stimulus for patient engagement 23

Figure 2.3 Categories of engagement outcomes for PGHD use 24

Figure 2.4 Classification model of patient engagement 25

Figure 2.5 A model integrating patient generated health data in clinical care 26

Figure 2.6 Value co-creation model 34

Figure 2.7 Value co-creation model for PGHD 34

Figure 2.8 A model to integrate consumer resources in value co-creation 39

Figure 2.9 A model integrating consumer resources in credence situations 46

Figure 2.10 Provider facilitated PGHD engagement-empowerment process 49

Figure 2.11 A theoretical framework for integrating consumer resources for engagement 51

Figure 3.1 An iceberg metaphor for Critical Realism ontology 54

Figure 3.2 Interview Analysis Process RQ 1-3 66

Figure 4.1 Categories of engagement outcomes for patient generated health data use 98

Figure 4.2 A comprehensive schema of PGHD use for patient engagement (A) 101

Figure 4.3 The experiential value of patient generated health data 108

Figure 5.1 Study 2 photograph quality check example 112

Figure 5.2 A comprehensive schema of PGHD use for patient engagement (B) 126

Figure 5.3 A model to understand how co-creation engagement affects credence services 130

Figure 6.1 A comprehensive schema of PGHD use, consequences & experiential values 139

Figure 6.2 Literature informed overarching theoretical framework 141

Figure 6.3 Research informed overarching theoretical framework 143

Figure 6.4 A Framework for Integrating PGHD into Clinical Care for Managers 144

 

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LIST OF ABBREVIATIONS

CE Consumer Engagement

DLQI Dermatology Life Quality Index

EMRs Electronic Medical Records

GP General Practitioner

LCCH Lady Cilento Children’s Hospital

MMS Multi-media Message Service

PE Patient Engagement

PGHD Patient Generated Health Data

PROMs Patient Reported Outcome Measures

QUT Queensland University of Technology

SMS Short Message Service

SSI Surgical Site Infections

TR Technological Readiness

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GLOSSARY

Carer A parent or appointed person who takes on the caring responsibility of a patient.

A Healthcare Consumer Any patient, carer or parent who accesses a health service.

Patient Empowerment A psychological end state of a patient composed of reassurance in one’s ability to manage a health situation (competence), self-confidence

in self-advocacy to obtain health outcomes (obtaining goals), health situation and health system control (control).

Patient Engagement An emergent state of the patient that occurs within a dynamic service process between the patient, the healthcare system, the patient’s

network and the use of patient generated health data. Engagement is characterised by a patient’s intrapersonal and interpersonal

involvement in activities determined by themselves and their peer network and interpersonal participation in activities co-created with

individual providers in the healthcare system. Patient engagement is most effectively evaluated through the relevant physiological,

cognitive, emotional, and behavioural outcomes as an end state, although this will be dynamically influenced by the service process over

time.

Patient Generated Health Data Patient generated health data (PGHD) is any clinically relevant consumers’ control data, collected by a patient outside clinical care.

Patient Involvement The act of gathering clinically relevant health data and associated activities by any healthcare consumer. The healthcare consumer

determines self-involvement, independent of the doctor with themselves and their peer network and it can be and measured through

physiological outcomes, cognition, emotion and self- involved behaviours.

Patient Participation The act of using patient-initiated or doctor-requested patient generated health data in clinical care or in the peer network by any healthcare

consumer. The healthcare consumer co-determines participation with the doctor and it can be and measured through physiological

outcomes, cognition, emotion and participative behaviours.

PROMs Patient reported outcomes measures are patient generated health data managed and distributed by clinicians.

Provider A frontline service worker and/or the health service.

Value Co-creation Value co-creation is a service concept that can only occur in direct provider-consumer interaction. Value is determined by consumers and

as such providers are facilitators of customer value.

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CHAPTER ONE: INTRODUCTION

Treasury modelling suggests that by 2023-4, the entire budgets of the States in Australia will need to be

allocated to health if Australians want to maintain the current level of spending (and service) in the

health area (Altman et al., 2014). Given the necessity to reduce costs, while maintaining quality, new

models of medicine have been suggested by health theorists. Specifically, there is a shift from the

expensive tradition of ‘disease fixing’ to a holistic approach of ‘wellness promotion’, placing consumers

(patients) and consumer engagement at the centre of healthcare (Bragazzi, 2013; Hood & Weston, 2004).

Patient engagement is proposed as a way to enhance consumers’ participation in the healthcare system

and had been identified as a strategy to improve healthcare outcomes and reduce the cost of healthcare

services (Lorig, Sobel, Stewart, Brown Jr, et al., 1999). This thesis addresses this issue by exploring

Patient Generated Health Data (PGHD), the influence on patient engagement before and within clinical

care, and psychological empowerment in credence situations.

Patient generated health data has been dubbed the “blockbuster drug of the century” (Taylor, 2013, p.

46). PGHD is defined as any clinically relevant data, collected by a patient outside the healthcare setting.

The main feature that distinguishes it from other data is that consumers control its use. Many experts

speculate that there is a link between patient generated health data and patient engagement (Ahern,

Woods, Lightowler, Finley, & Houston, 2011; Huba & Zhang, 2012; Van Doornik, 2013; Washington,

2014). This nascent area of healthcare research has primarily focused on using the data as a diagnostic

aid with engagement rarely defined a priori (Prey et al., 2014). To date, little empirical research has

emphasised the patient perspective or the service system, hence this thesis will fill that gap, exploring

patient generated photographs from the perspective of the patient, carer and parent, referred to as a

healthcare consumer herein.

This research utilises medical photographs taken by healthcare consumers for use in their own clinical

care. It will qualitatively explore perceptions of patient generated health data collection and use in Study

1 using scenario-based in-depth interviews. In Study 2, the use of PGHD for the detection of surgical

site infections (SSIs), and the effect this has on engagement, empowerment and service assessment will

be explored through a clinical trial using a pre-post intervention design, followed by semi-structured

interviews with participants as key informants. Results of both studies will then be triangulated to

existing literature to find a ‘probably true’ finding as dictated by a critical realist paradigm answering

the four research questions and drawing conclusion to the overarching question.

 

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1.1 Objectives

This research seeks to answer the overarching question: How does the use of patient generated health

data influence patient engagement in the context of credence services?

The first aim of the research program is to define what engagement is when utilising patient generated

health data. Using patient engagement and consumer engagement theory, the relevant terms of

engagement, involvement and participation will be defined for this research. This will then result in a

conceptual understanding of patient generated health data collection and use as a stimulus for patient

engagement.

The second aim of the research program is to explore perceptions of patient generated health data

collection, use and value for the healthcare consumer.

The third aim of this research is to understand how the use of consumer photographs influence

engagement and empowerment in the context of credence services and explain this with a framework.

The fourth aim of this thesis is to provide theoretical and managerial guidance to practitioners on the

implications of collection and use of PGHD to avoid service termination and provider switching,

increase service confidence, satisfaction and maximise engagement and empowerment.

1.2 Theoretical Framework

This research uses Value Co-creation theory (Grönroos & Voima, 2013) and proposes a theoretical

framework that responds to Mele and Russo Spena (2010) who suggest research agendas should aim to

deepen our understanding of the antecedents and implications when consumers bring their own

resources, like skills or information, and try to integrate them into the service interaction through co-

creation. In this thesis resources are either operant resources (knowledge and skills that act on other

resources) or operand resources (tangible and inert resources that are acted upon). Patient generated

health data is an operand resource; however, the ability to collect the resource is considered an operant

skill.

Research on co-creation in an Australian healthcare context is gaining popularity offering more patient-

centric, value based health services (Janamian, Crossland, & Wells, 2016; McColl-Kennedy, 2014). This

could indicate patient centeredness is giving way to ‘patient directed care’ (Tinetti, et al., 2016), a new

paradigm where patients control decision making, which will have significant implications for

healthcare services management and provider autonomy. The overarching model incorporates a process

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view of value co-creation (Payne & Storbacka, 2008) that aligns with previous research of a provider-

led patient engagement process, a credence situation encounter process and a patient assessment process.

Importantly it incorporates consumer, provider and relational factors identified as important in credence

situations literature.

1.3 Research Approach

In this research, the patient’s process will be emphasised responding to the call by Fumagalli, et al.

(2014) that the patient’s perspective in patient engagement research needs to be clarified as “most studies

emphasize providers’ and policy-makers’ initiatives” (p.8). A multi-stakeholder perspective of doctor,

patient and carer is included after calls from Gummesson and Mele (2010) to make value co-creation

research more representative of real life. Value is determined by the consumer and facilitated by the

provider in direct interaction, although all stakeholders can be benefit recipients, and when the firm

facilitates value it can also be a co-creator (Grönroos, 2011; Grönroos & Voima, 2013). Value can be

co-created or co-destroyed through the integration of resources by any stakeholder (Robertson,

Polonsky, & McQuilken, 2014) and value co-destruction will impact on system wellbeing (Smith, 2013)

and hence patient engagement.

The collection and use of patient generated health data as a consumer resource is suspected to effect

patient engagement, characterised by a consumer’s differing levels of participation with the doctor,

involvement in their own healthcare and peer network, and can be evidenced by physiological, cognitive,

emotional and behavioural outcomes. This in turn affects patient empowerment and credence service

assessment. In order to address the objectives of this thesis the following four research questions are

raised:

Research Question 1: How is patient generated data used and how does it influence patient engagement?

Research Question 2: What is the experiential value of patient generated health data in healthcare

services for a patient and how does it reflect the five domains of functional, transactional, social,

emotional and self-determination value?

Research Question 3: How does patient generated health data use influence co-creation in credence

services?

Research Question 4: Does consumer resource creation and participative engagement in clinical care

promote patient empowerment? If so how?

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1.4 Theoretical and Managerial Contributions

The following provides a summary of the gaps in the literature addressed by this thesis and the specific

theoretical and managerial contributions that will result from the research findings. Table 1.1 presents

the research gaps, research questions, methodology and theoretical contributions of this thesis. Table

1.2 presents the managerial contributions of this thesis with a summary of the research gaps, the specific

research questions, the methodology and related contributions.

1.5 Overview of Thesis Chapters

Chapter One introduces the research providing an overview. Chapter Two demonstrates an extensive

literature review of patient generated health data, patient and consumer engagement, services marketing,

value co-creation theory, credence services and psychological empowerment theory. This chapter poses

four research questions, sets out the research agenda and theorises the constructs integral to how PGHD

collection and use influences patient engagement. Chapter Three defines a qualitative approach in Study

1 and a mixed methods approach in Study 2 to answer all research questions. Chapter Four reports on

Study 1 which used in-depth interviews to answer Research Questions 1-2. Chapter Five reports on a

clinical trial conducted in a tertiary children’s hospital, and the selective coding across both studies to

confirm Research Questions 1-2 in clinical care. This chapter then addresses patient empowerment,

suggesting a framework to answer Research Question 3, tacitly answering Research Question 4. Finally,

Chapter Six discusses the results, confirms patient generated health data use, the experiential value of

the data and relationship between PGHD engagement and empowerment, recommending strategies for

healthcare providers that increase service confidence, satisfaction and reduce switching behaviour.

To undertake this research, an examination of what constitutes patient engagement is required. Hence,

the following literature review begins by examining patient engagement in the context of this research.

Once the key terms are defined, the review utilises Service Dominant Logic and Services Marketing

literature to incorporate the consumer perspective when collecting and using patient generated health

data for patient engagement in the context of credence services.

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Table 1.1 Theoretical contributions of this thesis

Gaps in the Literature Research Question Study and Methodology Contribution

Authors have documented functional value

(Chahal & Kumari, 2012), transactional value

(Lee & Lin, 2011), social value (Dodds et al.,

2014a; Nambisan & Nambisan, 2009; Teke et al.,

2012) and emotional value (Sweeney & Soutar,

2001; Zainuddin et al., 2011) when measuring

value in healthcare services. Analysis of the

literature suggests a fifth emergent construct of

self-determination value (Dodds et al., 2014; Lee

& Lin, 2011) which also includes self-advocacy

for ethics, spirituality and personal perspective

within the healthcare service.

(RQ2) What is the

experiential value of

patient generated health

data in healthcare

services for a patient

and how does it reflect

the five domains of

functional,

transactional, social,

and emotional and self-

determination value?

Interviews in Studies 1 and

2 established the presence

of the five experiential

values of PGHD which

were concordant with

literature and included the

emergent construct of

efficiency value.

The analysis of experiential values of PGHD as

functional, emotional, transactional, self-

determination, social and efficiency value offers

insight into the consumers’ perspective of PGHD and

offers insight into how to measure value in this

context.

Leung (2009) found that there was a significant

positive relationship between user-generated

content involvement and civic participation on the

composite dependant variable psychological

empowerment, however it “does not resolve the

issue of whether involvement in content

generation online enhances empowerment, or

whether empowered individuals choose to

participate” (p.1344).

(RQ4) Does

involvement in

resource creation and

participative

engagement in clinical

care promote

empowerment? If so

how?

Selective coding of all

consumer interviews in

Studies 1 and 2 was

undertaken for data

solicitation, involvement,

participation, empowering

process, empowered

outcome and service

outcome.

One participant had “definitely not” taken images

previously yet experienced full empowerment,

suggesting disempowered people (in this context

empowerment is unsolicited PGHD use) may

experience empowerment through engagement and

resource creation. This tacitly answers the research

questions asked by Leung et al. (2012), suggesting

that resource generation and engagement can cause

empowerment for the disempowered.

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Credence services suggest an information and

power asymmetry between producer and

consumer, however patient generated health data

as a resource alters this asymmetry. If providers

facilitate the patients’ value in co-creation, patient

power is promoted with physicians already

acknowledging the data reduces their power and

responsibility (Sanger et al., 2016). Given patient

engagement is part of a wider concept of patient

empowerment (Fumagalli, et al., 2014) this thesis

suspects patient generated health data will affect

engagement and empowerment in credence

services which are a direct challenge to the

physicians’ prized autonomy (Bardes, 2012).

(RQ3) How does

patient generated health

data influence co-

creation and

engagement in

credence services?

Selective coding of all

consumer interviews in

Studies 1 and 2 was

undertaken for data

solicitation, involvement,

participation, empowering

process, empowered

outcome and service

outcome.

This thesis suggests a model composed of

engagement as the collection of solicited and

unsolicited data, mediated and / or moderated by

support and autonomy in participation with

providers on the composite dependant variable of

empowerment composed of increased responsibility

(competence), self-confidence (self-efficacy) and

increased health system and health situation control

(control) for testing in further research (Figure 6.4).

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Table 1.2 Managerial contributions of this thesis

Gaps in the Literature Research Question Study and Methodology Contribution

A comprehensive

understanding of the uses of

patient generated health data

from the perspective of the

healthcare consumer is

unknown and “future research

would benefit from an

ontological framework for

describing and measuring

patient engagement” (Prey, et

al., 2014, p. 748).

(RQ1) How is patient

generated data used and

how does it influence

patient engagement?

Study 1 used an a priori framework and open coding was

applied to 34 interviews with patient carers and clinicians.

Study 2 used the a priori framework and open coding of 26

interviews. Findings of Study 1 were confirmed in clinical

care and new constructs related to the service experience

emerged.

Comprehensive schema of

PGHD use attributes, thematic

consequences and experiential

values (Figure 6.1)

8

 

2.0 LITERATURE AND THEORY REVIEW

2.1 Patient Centeredness

Traditionally healthcare was a place of ‘doctor-knows-best’ where information asymmetry enshrined

the doctor as all-powerful and the patient as a passive recipient. This information asymmetry is a

hallmark of credence services (Bloom & Pailin, 1995; Darby & Karni, 1973) where the consumers

cannot judge the service they have received even after they have experienced it. With the increased

recognition of patients as healthcare consumers, ‘patient centeredness’ was conceptualised emphasising

a patient’s individual needs and aspirations (Berwick, 2001) and gained popularity in the early 2000s.

Today, patient-centred care is considered the gold standard (Kramer et al., 2014) although some are

doctors reluctant to share their prized autonomy (Bardes, 2012). One characteristic of the patient

centeredness is a recognition that patients can create resources to enhance healthcare services, a role

traditionally undertaken by providers, and thus a phenomenon called patient generated health data was

conceptualised.

2.2 Patient Generated Health Data

Patient generated health data is any clinically relevant data, collected by a patient outside the clinical

care setting. A unique feature of the data is that consumers collect and control its use. This distinguishes

it from patient reported outcome measures (PROMs), which are typically managed and distributed by

clinicians (Murthy & Wood, 2015; Trujols et al., 2013). This thesis draws from the patient generated

health data literature (2004-current) specifically focussing on scholarship where patients control the

distribution of digital information, regardless of whether it is clinician requested (solicited) or patient

initiated (unsolicited).

Patient generated health data can be quantitative, e.g. blood glucose level readings, qualitative, e.g. a

diary of mood changes, or visual, e.g. a series of photographs of a skin lesion that shows changes over

time. It can be discreet, repeated or continuous, collected automatically or patient captured, sent via

store-n-forward methods or used in face-to-face encounters (Hartgers & Jatoi, 2010; Kumar, Goren,

Stark, Wall, & Longhurst, 2016). Patient generated health data is not new (Mazze et al., 1984); however

the proliferation of digital techniques to capture it through smart phones, and policy shift towards

incorporating it into Personally Controlled Health Records (Deering, 2013) means its impact on routine

clinical care is bigger than before. A ‘Patient Engagement Framework’ endorsed by the Office of

National Coordinators of Health IT and the National eHealth Collaborative in the USA recommends

that it can be implemented into routine clinical practice through the patients’ use of Personally

9

 

Controlled Electronic Health Records and Patient Generated Health Data (Deering, 2013). Many of the

papers that evaluate patient generated health data do so in the context of electronic medical records

(EMRs), although this is not the focus of this research. Data collection can be distinguished as a separate

act to the use of data in clinical care, however both will impact on engagement. Hence, this thesis focuses

on digitally captured patient generated health data outside of clinical care and use of the data with

providers in clinical care as an act of co-creation. It recognises that both collection and use will be

critical in promoting patient engagement, however it is the use of the data in care that influences

credence services situations.

A comprehensive review of the patient generated health data literature was undertaken (Appendix A)

and a summary is provided in Tables 2.1-2.2. Titles and abstracts were screened for inclusion. Papers

were excluded if they did not report on patient generated data, they used non-digital methodologies, they

focused on patient reported outcomes measures (PROMs) or home-monitoring initiated or solicited by

clinicians without patients controlling the data. Hand-searching via Google Scholar and the Journal of

Medical Internet Research 2004-current was also conducted. Fifty-three papers have been included in

the final literature review, which itself has been divided into provider and patient schemas with thematic

analysis to guide the research inquiry. As the research is nascent (Chung & Basch, 2015) expert opinion

on the projected use of PGHD and actual empirical findings have been distinguished.

10

 

Table 2.1 The provider facing implications of patient generated health data Provider Facing Implications

Proposed Implications of PGHD via Expert Opinion

PGHD Research in Routine Clinical Practice Thematic Analysis

Diagnostic Management Aid

Tang et al. 2006; Ahern et al. 2011; Huba & Zhang, 2012; Archer et al. 2013; Allen et al. 2016; Chung & Basch 2015; Fountain 2014 (Reduced); Tan et al. 2014.

Armstrong 2004 (Rheumatology); Boyce et al. 2011(Dermatology); Hanu-Cernat et al. 2009 (Maxillo-Facial surgery); Frühauf et al. 2012 (Dermatology); Pourdanesh et al. 2012 (Maxillo-Facial surgery); Nundy et al. 2014 (Diabetes); Heintzman & Kleinberg, 2016 (Diabetes); North et al. 2015 (Message Content); Obeyesekera et al. 2006 (Sexual Health); Azar et al. 2009 (Diabetes); Michiels et al. 2016 (Wound Management).

Physiological Health Outcomes

Use & Acceptance Issues

Ahern et al. 2011; Huba et al. 2012; Archer, 2013.

Armstrong, 2004; Hanu-Cernat et al. 2009; Boyce et al. 2011; Frühauf et al. 2012; Pourdanesh et al. 2012; Wolf et al. 2013; Nundy et al. 2014; Tan et al. 2014

Provider Heterogeneity

Inhibitors Huba et al. 2012 (Data Privacy); Archer, 2013 (Risk Management, Legal Implications, Duplication, Technical Readability, Interoperability, Retention, Policy, Data Privacy); Taylor, 2013 (‘App’ Prescription, Interoperability, Tagging); Van Doornik, 2013 (Tagging); Aschettino et al. 2015 (Legal Implications); Chung et al. 2015 (interoperability, clinician expertise); Chung et al. 2016 (Quality, Legal Implications, Workflow Issues, Reimbursement, Data Privacy & Security); Fountain 2014 (data provenance, legal issues, interoperability); Casper & McDaniel 2015 (Data Security, Visualisation); Hull 2015 (interoperability, workflow, legal implications); Klein 2015 (legal implications, technical requirements); Leventhal et al. 2015 (Interoperability, Data Tagging, Redaction); Lewis et al. 2014 (Security, Privacy) Marquard et al. 2013 (Interoperability); Sujansky et al. 2015 (Legal issues, interoperability).

Data Accuracy Tang et al. 2006 (Improved); Ahern et al. 2011; Taylor, 2013 (Noted Issue); Van Doorik 2013 (Noted Issue); Fountain 2014 (noted Issues); Klein 2015 (Quality, Reliability); Lewis et al. 2014 (Quality, Reliability); Marquard et al. 2013 (Reliability); Fansky et al. 2015 (Data amount, Authority); Baudendistel et al. 2015 (Data Volume, Data Order, Data Filter).

Huba et al. 2012 (Improved); Nundy et al. 2014 (Improved by reducing recall bias); Heintzman et al. (An Issue Overcome by Data Simulation); Hogan 2015 (Data was not accurate); Kumar 2016 (Improved); North et al. 2015 (Partial Info); Sanger et al. 2016b (Partial Info).

Service Implications

Enhanced Provider–Patient Communication / Collaboration

Tang et al. 2006 (Electronic Medical record); Van Doornik 2013 (between episodes of care); Aschettino et al. 2015 (Electronic Medical record); Murthy & Wood 2015 (Survivorship); Tan et al. 2014 (improved); Baudendistel et al. 2015; Hull 2015 (Worse).

Huba et al. 2012 (Improved); Frühauf et al. 2012 (Improved); Pourdanesh et al. 2012 (Improved); Baer, 2011 (Improved); Nundy et al. 2014 (Agenda setting, Patient barriers, Understanding the patient’s perspective, racial barriers bridged); Klein 2015 (Agenda setting); Kumar 2016 (Improved); Hartgers 2010 (Distance).

Cost1 Time2 & Treatments3 Implications

Tang et al. 2006 (Decrease1,2); Huba et al. 2012 (Increase1,2); Archer, 2013 (Increase1, 2; Taylor, 2013 (Decrease1,2); Chung et al. 2015 (Increase1).

Steward et al. 2010 (Increase1,2); Frühauf et al. 2012 (Decrease1,2); Pourdanesh et al. 2012 (Decrease1,2); Baer, 2011 (Decrease 3); North et al. 2015 (Increase1); Whitehead et al. 2016 (Increase1,2); Baer et al. 2011 (Decrease3); Hogan et al. 2015 (Increase3); Azar et al. 2009 (Decrease1,2,3).

Service Experience

Murthy & Wood 2015; Hull et al. 2015.

North et al. 2015 (increase e-visits); Frühauf et al. 2012 (increase e-visits); Sanger 2016a (Reduced power, responsibility, transparency); Baer et al. 2011 (Quality of Care).

11

 

Table 2.2 The consumer facing implications of patient generated health data

Patient Facing Implications

Proposed Implications of PGHD via Expert Opinion

PGHD Research in Routine Clinical Practice

Thematic Analysis

Improved health Outcomes

Tang et al. 2006; Hanu-Cernat 2009; Pourdanesh et al. 2012; Aschettino et al. 2015; Chung et al. 2016; Murthy & Wood 2015; Petersen et al. 2015; Wood et al. 2015.

Armstrong 2004 (Rheumatology); Boyce et al. 2011(Melanoma); Baer 2011 (Primary Health); Gollamundi et al. 2016 (Diabetes); Hartgers 2010 (Rash); McClellan et al. 2016 (Diabetes); Whitehead et al. 2016 (Multiple).

Health Outcomes

Collection & Use Issues

Tang et al. 2006 (easy to use); Huba et al. 2012 (misinterpretation); Klein 2015; Petersen et al. 2015 (ownership, age, condition sensitivity); Sujansky et al. 2015 (Trust, Ease of Use); Hull et al. 2015 (acceptability); Baudendistel et al. 2015 (Data Volume, Data Order).

Boyce et al. 2011(Easy to use); Frühauf et al. 2012 (Easy to use); McClellan et al. 2016 (Age, Ethnicity, Education); Newhouse et al. 2015 (Health status, Demographics); Spencer et al. 2016 (Altruism, Ease of Use); Whitehead et al. 2016 (Training, Ease of Use); Whitehead et al. 2016 (Acceptability); Azar et al. 2009 (Ease of Use, access to technology, demographics).

Patient Heterogeneity

Inhibitors Clemens et al. 2012 (Data Privacy, Data Security); Klein et al. 2015 (Data Privacy); Marquard et al. 2013 (Technical Skill); Obeyesekera et al. 2006; Hull et al. 2015 (Data Privacy, Data Security); Ancker et al. 2015 (Effort, Demographics, Chronic disease); Leventhal et al. 2015 (Data sensitivity). North et al; 2013 (Late Diagnosis Risk). Spencer et al; 2016 (Data Privacy, Data Security). Petersen et al. 2015 (Data Privacy, Data Security); Whitehead et al. 2016 (Technological Issues); Baudendistel et al. 2015 (Technological Issues).

Psychological outcomes

Chung et al. 2016; Murthy & Wood 2015; Steward et al. 2010; Tang et al. 2006; Ahern et al. 2011; Shapiro et al. 2012; Shapiro et al. 2012; Nundy et al. 2014; Murthy & Wood 2015; Tang et al. 2006 (quality of life); Shapiro et al. 2012 (quality of life); Hull et al. 2015 (Activation); Steward et al. 2010 (Behaviour Change); Huba et al. 2012 (Behaviour Change); Van Doorik 2013 (Behaviour Change); Shapiro et al. 2012 (Behaviour Change); Boyce et al. 2011(Behaviour Change).

Frühauf et al. 2012 (increased quality of life); Tan et al. 2014 (empowerment); McClellan et al. 2016 (behaviour change).

Engagement Ahern et al. 2011; Huba et al. 2012; Van Doornik, 2013; Washington, 2014; Shapiro et al. 2012; Basch et al. 2013; Chung et al. 2015; Petersen et al. 2015; Nelsen, 2012.

Chung et al. 2016b (participation in online community); Kumar 2016 (between clinic engagement with provider); Spencer et al. 2016 (feedback); Tan et al. 2014 (participation in clinic); Baer et al. 2011 (Secure messaging); Hartgers 2010 (treatment compliance).

Service Implications

Enhanced Communication

Tang et al. 2006; Taylor, 2013; Ahern et al. 2011; Van Doornik, 2013.

Kumar 2016 (adolescent population).

Patient-Provider Collaboration

Ahern et al. 2011; (improved trust); Shapiro et al. 2012; Washington, 2014 (improved trust); Tan et al. 2014 (Trust); Hull et al. 2015 (unknown).

Sanger et al. 2016 (No change in relationship status); Spencer et al. 2016 (Improved trust).

Cost1 Time2 & Treatments3 Implications

Tang et al. 2006 (Decrease1,2); Ahern et al. 2011 (Decrease2); Frühauf et al. 2012 (Decrease1,2); Klein 2015 (Increase and Decrease1); Hartgers 2010 (Reduction2).

North et al. 2015 (Reduction1,2).

Service Experience

Murthy & Wood 2015 (Value). Klein 2015 (Value); Baer et al. 2011 (Satisfaction).

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Experts speculate that there is a link between the collection and use of patient generated health data and

patient engagement. Current research shows it can improve physiological health outcomes and

psychological outcomes (Ahern, et al., 2011; Huba & Zhang, 2012; Shapiro, 2012; Van Doornik, 2013;

Washington, 2014) described in the next section of this thesis.

Physiological Health Outcomes

Early solicited patient generated health data tested the accuracy of self-reported measures of blood

glucose levels for diagnosis (Mazze, et al., 1984) and was indicative of the ‘provider-facing’ solicited

approach to the phenomena. Unsolicited digital photographs taken of physiological dysfunction caused

by Pyrone’s disease to aid clinical management are indicative of the patient facing potential of the data

(Obeyesekera, Herdiman, & Goh, 2006).

Patient generated health data is primarily useful to providers in the diagnosis, management and

resolution of conditions (Ahern, et al., 2011; Gollamudi, Topol, & Wineinger, 2016; Huba & Zhang,

2012; Tang, Ash, Bates, Overhage, & Sands, 2006). For example, a patient experienced an undiagnosed

transient rash over many years. After taking images of the condition on a mobile phone when the rash

appeared on a shopping trip, the patient presented the evidence to her physician and she was diagnosed

as having a typical urticarial rash (Armstrong, 2004). Photographs taken on smart phones have helped

the diagnosis of medication-related skin conditions (Hartgers & Jatoi, 2010), the management of

psoriasis (Frühauf, et al., 2012) and the surveillance of skin lesions for melanoma (Boyce, Gilmore, Xu,

& Soyer, 2011). These results show that the data does indeed improve physiological health outcomes,

yet the inclusion of this data is not healthcare process and is not automatic in healthcare services. This

is because acceptability and appropriation of PGHD is based on the heterogeneous situational factors of

both clinicians and patients. While the physiological health outcomes are integral in the exploration of

patient generated health data and the effect of patient engagement, this type of investigation is better

suited to a medical research methodology. Hence this thesis will focus on the cognitive, emotional and

behavioural outcomes whilst referencing potential physiological health outcomes which will need to be

addressed in future healthcare research.

Patient and Provider Heterogeneity

Collection and use of patient generated health data in clinical care is a theme demonstrated in the

literature with patients willing to collect the data in some circumstances (Boyce, et al., 2011). However,

there are also inhibitors to data collection and use which are heterogeneous to individual healthcare

consumers. The barriers for patients and carers include age, ethnicity, education, ease of use and

technical expertise (Marquard et al., 2013; McClellan, Panattoni, Chan, & Tai-Seale, 2016) with

13

 

motivators being better health outcomes and altruism (Spencer et al., 2016). The inhibitors for the use

of PGHD in clinical care are predominantly data privacy and data security (Clemens, 2012) which

require regulatory oversight, and bring together the usage, contextual factors, technology complexity

and the severity and probability of harm (Lewis & Wyatt, 2014).

The current research suggests patient generated health data is accepted by clinicians; however the 75%

of doctors who used the data in a clinical assessment reported it did not impact on their clinical decision

making with 25% not using the data at all (Nundy, Lu, Hogan, Mishra, & Peek, 2014a). Tan, et al.

(2014) found the same results with another small study population, suggesting that somewhere between

10-25% of providers will not use patient generated health data in clinical care. Inhibitors for clinicians

to accept data include risk management, legal implications, duplication of data, retention, policy

development (Archer et al., 2013) data security (Casper & McDaniel, 2015; Huba & Zhang, 2012)

interoperability (Leventhal, Cummins, Schwartz, Martin, & Tierney, 2015; Sujansky & Kunz, 2015;

Taylor, 2013) and data tagging (Leventhal, et al., 2015; Van Doornik, 2013).

Moreover, these issues are accentuated when the data was unsolicited (Shapiro, 2012). Unsolicited data

is information not requested by a treating clinician, taken into clinical care by the patient. This data is

representative of the patient perspective of the healthcare journey, however may not provide clinically

relevant information for the provider. Worse still it may cause misdiagnosis or increase service costs

due to unnecessary treatments. Hogan et al. (2015) report on use of a medical photograph depicting a

post-operative iatrogenic hematoma that was inaccurate, misleading clinicians to believe an urgent

assessment was required. In this case, the use of PGHD had ramifications for the healthcare service

because it instigated a redundant consultation. Hence clinicians prefer solicited data or information they

request. Given the move toward patient centricity finding a meaningful way in implement unsolicited

patient data is consideration, yet balancing this with clinical value is critical. Health information

managers approach unrequested data with caution, suggesting that it is “unsolicited material” (Archer,

et al., 2013). Yet in the exploratory study by Huba and Zhang (2012) where 21 medical practitioners

from 16 disciplines were interviewed about the use and issues of patient generated health data, findings

showed improved patient-provider communication and an enhanced ability for patients to recognise

their own illness. Overall the biggest area of concern for clinicians was the legal and regulatory issues

associated with the data including data ownership (Petersen & DeMuro, 2015) reimbursement for

services (Chung et al., 2016) and misdiagnosis (Hogan, et al., 2015; Wolf et al., 2013).

Data accuracy is a critically important aspect of patient generated health data for clinicians and Nundy

et al. (2012) suggest that data accuracy would improve by reducing recall bias because patients could

log real time data about diabetes management adherence (e.g. How many days in the last week did the

patient take their medication?). This contradicted the findings of Mazze et al.(1984) who noted that

14

 

automatic tracking of blood glucose levels for diabetes management was better than patient reported

logs, as patients were likely to report ‘socially desirable’ results. Despite the problem of data accuracy,

Heintzman & Kleinberg (2016) were able to overcome the issues of uncertain data from body-worn

sensors by data simulate on citing that the “better modelling of uncertainty may enable better translation

of methods to free-living conditions” (p. 259) suggesting techniques can be developed to mitigate the

problem. Research on suspected and actual impediments to inclusion of PGHD in clinical care for the

provider have been well documented in existing literature and thus this research will focus on the

healthcare consumer.

The psychological outcomes promoted by patient generated health data in clinical care is under-

researched in the extant literature, yet could be important to the patient becoming a co-creator in

healthcare (Basch, 2013; Petersen & DeMuro, 2015; Sands et al., 2014). Previous studies show that

patient generated health data improves patient activation (Nundy, et al., 2014a; Tang, et al., 2006), a

state characterised by an informed, knowledgeable, active patient who can sustain a course of healthcare

under pressure (Hibbard, Stockard, Mahoney, & Tusler, 2004). Huba & Zhang (2012) reported a

suspected link between the use of patient generated health data, illness recognition and healthy

behaviour adoption with one doctor reporting:

“It is not just me learning about them, they are learning about themselves… say a patient has

been tracking their anger and they begin to realize that they are angry around this particular

time. They discover it because of the data, which is much more powerful in my business than me

figuring it out and telling them.” (p. 3898)

This powerful concept coupled with real evidence that patient generated health data saves patient’s time

and money (Frühauf, et al., 2012) is a strong motivator for the research of patient generated health data

and its effects on patient engagement. Tang et al. (2006) suggested patients could experience a better

quality of life and Frühauf et al. (2012) reporting this finding in a study of tele-dermatology services

where “all patients perceived they had made savings of time and expenses, and moreover, they believed

they had gained a more flexible and empowered lifestyle” (p. 44). The evidence was measured

empirically using a dermatology life quality index (DLQI) and scores for patients in the trial went from

15.5 (moderate effect) at baseline to 5.0 (small effect) at week 12 compared to previous psoriasis patient

cohorts who received usual care and reported a decline of mean scores of 11.7 and 12.2 at baseline to

7.1 and 6.7 at week 12, emphasising the effects of using patient generated health data are both

psychological and physiological.

Researchers Tan, et al. (2014) conducted a qualitative interview study based on perceptions of

unsolicited photographs patients bring to General Practitioners (GPs). This study closely aligns with the

15

 

objectives of this thesis. This research will improve on their paper by addressing 1) the small sample

size of eight participants and 2) including patients, carers and parents as healthcare consumers and not

just medical professionals. In their paper GPs stated that they considered patient images helpful to the

diagnostic process, however they were subject to privacy, confidentiality and data security regulation.

Notably, GPs also believed the images could empower patients, saying it helped patients “retain control”

and “the patient became more part of the team” (p. e292). While these results are important, hearing

directly from patients is critical to understanding empowerment and patient generated health data. Hence

this research aims to conduct a more thorough study of patient generated health data, emphasising the

patient’s perspective, building on the work by Tan et al. (2014) and filling an important gap in the

literature.

Service Implications

As clinical costs rise, private telehealth offerings emerge and health tracking gains popularity, and

providers face unprecedented pressure to develop cheaper, patient centric, value-based health services.

Increasingly managers are utilising co-creation to understand consumer desires (Janamian, et al., 2016;

McColl-Kennedy, 2014), deliver superior offerings and maintain relevance. In parallel, consumers are

connecting in online and offline networks, collecting health information through mobile technology and

looking for innovative services that improve their participation (Noren, 2014). It is in this context that

patient generated data emerges as a signature of the engaged, proactive patient.

Chung et al. (2016) worked co-creatively with the Crohn’s and Colitis Foundation of America Partners

Patient-Powered Research Network to accelerate research in inflammatory bowel diseases by creating

a vibrant patient driven online community. They aimed to provide the:

technical infrastructure, patient governance, and patient-driven functionality needed to: 1)

identify, prioritize, and undertake a patient-centred research agenda through sharing person-

generated health data; 2) develop and test patient and provider-focused tools that utilize individual

patient data to improve health behaviours and inform health care decisions and, ultimately,

outcomes; and 3) rapidly disseminate new knowledge to patients, enabling them to improve their

health. (p. 1)

This allowed researchers to track member’s health status and crowd source the research priorities.

Similarly Kumar et al. (2016) tracked adolescent diabetic patients who suffered hypoglycaemic events

by downloading automatically collected data from patient iPhones. Data was instrumental in engaging

patients outside clinical care between visits and incorporated engagement with carers (parents)

“simultaneously facilitating a secure discussion among adolescents, parents, and providers” (p. 535).

Patients and parents did not mind being alerted to actionable trends and altered medication based on

16

 

healthcare practitioner advice between clinic visits. The most powerful aspect of this study was the

ability to detect ‘observations of daily living’ (Brennan & Casper, 2015) which enabled lifestyle choices

to be correlated to clinical outcomes. To date, this is the only study that has incorporated the perspectives

of carers/parents when using patient generated health data and hence this thesis will address this gap by

using parents as the primary focus to understand the influence of PGHD on engagement.

The service of healthcare relies heavily on interaction between the patient, carer (where applicable) and

the clinician. Communication between providers and patients via emails (Baer, 2011) and in face-to-

face clinical care is altered through patient generated health data with most studies reporting

improvements (Pourdanesh, Sayyedi, Jamilian, & Yaghmaei, 2012). Other collaborative factors include

improvements to agenda setting, understanding the patient’s perspective and overcoming cross cultural

differences (Nundy, et al., 2014a). However clinicians reported that patient generated health data has an

effect by reducing their power, responsibility and transparency (Sanger, et al., 2016). The issue of

reducing power in credence services where information asymmetry defines the relationship is an

important aspect of this research given the speculation that data will increase patient empowerment.

Health service implications are that ‘e-visits’ or tele-health consultations increased in two studies

(Frühauf, et al., 2012; North et al., 2015) indicating providers may need to consider service changes

precipitated by the data. Other service implications of the data showed contradictory outcomes with

Frühauf et al. (2012) suggesting that time and cost of services would decrease with tele-dermatology;

with North et al. (2015) recommending PGHD increases service time. In their study of the 52,373 email

messages initiated by patients, 642 contained messages about blood pressure and 17% of cases led to a

change in medication, with 53% of cases requiring an appointment and more pharmacy information.

While this thesis is not an economic study of patient generated health data, broad trends of how the data

affects the service of healthcare will be explored as a starting point for future research.

Finally, very few papers analysed the patient’s service experience in relation to patient generated health

data. In a qualitative interview study with Veterans Affairs patients, clinicians and external partners

Klein et al. (2015) reported the value of information in patient portals had two mains themes: diagnostic

utility, akin to functional value, and patient engagement akin to transactional value. When engaged with

the technology and the information in face-to-face services the patient “felt part of the process” (p. 5)

by participating in their care and having a greater understanding of what was going on. A weakness of

this paper is that it does not explicitly define what engagement is and how it can be measured; thus this

thesis will undertake a more rigorous exploration of the topic. Additionally PGHD can be categorised

into a typology to evaluate data type, collection and use modality type (Table 2.3.)

17

 

Table 2.3 Data, collection and use modality type for PGHD literature (2004-present)

Author Data Collection Use Modality Armstrong (2004) Photographs Discrete Face to Face

Azar (2009) Test Results Repeated Both

Baer (2011) Messages Repeated Face to Face

Boyce (2012) Photographs Discrete Tech Mediated

Chung (2106b) Messages, surveys Repeated Tech Mediated

Frühauf (2012) Photographs, messages Repeated Tech Mediated

Gollamundi (2016) Test Results Repeated Tech Mediated

Hanu-Cernat (2009) Photographs Discrete Face to Face

Hartgers (2010) Photographs, messages Discrete Tech Mediated

Heintzman (2016) Test Results Continuous Tech Mediated

Hogan (2015) Photographs, messages Discrete Tech Mediated

Klien (2015) Messages, Test Results Repeated Tech Mediated

Kumar (2016) Test Results Continuous Tech Mediated

McClennan (2016) Messages Repeated Tech Mediated

Michiels (2016a) Photographs Repeated Tech Mediated

Newhouse (2014) Messages Repeated Tech Mediated

North (2013) Messages, Test Results Repeated Tech Mediated

North (2015) Messages, Test Results Repeated Tech Mediated

Nundy (2012) Messages, surveys Repeated Face to Face

Obeyesekera (2006) Photographs Repeated Tech Mediated

Pourdanesh (2012) Photographs Discrete Both

Tan (2012) Photographs Discrete Face to Face

Whitehead (2016) Messages, Test Results Repeated Both

Wolf (2013) Photographs Discrete Tech Mediated

The four main types of PGHD were messages, test results, photographs and surveys. These were

generated discretely (once per health event), repeatedly (multiple times per health event) or continuously

(data was continuously collected over the health event period). When data is presented in clinical care

it can be used in face to face clinical encounters, through technology mediated encounters, or both. A

typology is presented in Table 2.4 detailing the data type against collection and use types.

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Table 2.4 A typology of patient generated health data (2004-present)

Collection Face to Face Tech Mediated Both Discrete Photographs Photographs, Messages Photographs, Messages, Test Results

Repeated Messages Photographs, Messages,

Surveys Test Results

Test Results

Continuous - Test Results -

To promote engagement, data type, collection and use type are important. This research sought to

maximise engagement and utilised repeated PGHD collection, with the aim to have these used in face-

to-face and technology mediated care. Discrete measures collected once and continuous measures where

collection is automatic, require lower consumer engagement than repeated measures where healthcare

consumers must consciously collect, transmit and use data in clinical care. Hence repeated measures are

expected to produce the highest levels of engagement and were used to explore the central contention

of this thesis. To date no studies have used photographs for both face-to-face and technology mediated

treatment modalities repeated over time. Hence this research will address that gap utilising healthcare

consumer photographs taken over time for use in both treatment modalities. In an era where shrinking

health budgets are promoting the radical rethinking of medicine to emphasise wellness promotion over

disease management, the ancillary finding by Boyce et al. (2011) that patient generated health data could

lead to improved awareness of a health condition and recognition of health related behaviours is

important. Increases in quality of life and empowerment, coupled with real evidence that patient

generated health data saves patients’ time and money (Frühauf, et al., 2012) is a strong motivator for the

research of patient generated health data and its effects on patient engagement. For this reason, this

phenomenon warrants further research. Defining engagement is the essential first step and the next

section of this thesis will examine patient engagement and consumer engagement and ascertain the

appropriate conceptualisation for this research.

2.3 Consumer Engagement

Consumer engagement is defined in the literature in terms of a psychological state (Brodie, Hollebeek,

Juric, & Ilic, 2011; Vivek, Beatty, & Morgan, 2012); however it has also been conceptualised as a

dynamic process (Röndell, Sörhammar, & Gidhagen, 2016). Brodie et al. (2011) suggest it is “a form

of social, interactive behaviour, has been characterized as a transient state occurring within broader

relevant engagement processes developing over time” (p.254). In addition, health scholars have

extended this theory suggesting patient engagement is an emergent state, a process and a series of

behaviours (Fumagalli, et al., 2014). Indeed, patient engagement is a form of consumer engagement and

mapping the Fundamental Propositions of Consumer Engagement to the context of PGHD provides a

description of patient engagement that can be explored in this research (Table 2.5) with these concepts

underpinning the research.

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Table 2.5 Fundamental Propositions of CE contextualised for Patient Engagement

Fundamental Propositions (Brodie et al. 2011) Contextualised for this Research FP1. CE reflects a psychological state, which

occurs by virtue of interactive customer

experiences with a focal agent/object within

specific service relationships.

PE reflects the psychological state of the

patient, which occurs by virtue of the interactive

experiences with the PGHD in within the

specific service relationship with the doctor.

FP2. CE states occur within a dynamic, iterative

process of service relationships that co-creates

value.

PE states occur within a dynamic, iterative

process of service relationships between the

doctor and the patient that co-creates value.

FP3. CE plays a central role within a nomological

network of service relationships.

PE plays a central role within a nomological

network of the doctor-patient relationship.

FP4. CE is a multidimensional concept subject to

a context and/ or stakeholder-specific expression

of relevant cognitive, emotional, and behavioural

dimensions.

PE is a multidimensional concept subject to a

healthcare context and/ or stakeholder-specific

expression of relevant physical, cognitive,

emotional, and behavioural dimensions

FP5. CE occurs within a specific set of situational

conditions generating differing CE levels.

PE occurs within a specific set of situational

conditions generating differing PE levels

Psychology also proposes that intrapersonal and interpersonal factors underpin attitudes and can lead to

emotional, behaviour and cognition. According to Sallis, Owen, and Fisher (2008), the ecological model

of health behaviour “has multiple levels of influences, often including intrapersonal (physiological,

psychological), interpersonal (social, cultural) organizational, community, physical environmental, and

policy” (p. 466). Thus, this research conceptualises engagement as a measure of the intrapersonal and

interpersonal state of the patient, which occurs by interactive experiences with patient generated health

data within the ecological context of healthcare service (a situational condition). Engagement is a

process that cannot be measured; however, engagement is most effectively evaluated through relevant

physiological, cognitive, emotional, and behavioural outcomes as an end state. Engagement is dynamic

over time and influenced by the service process.

Patient Engagement

A recent systematic review of patient engagement found that of the 89 randomised controlled trials that

purported to measure engagement, 21 of those had no quantifiable measure and of the 10 high quality

papers elected for review, only one study defined engagement a-priori (Simmons, Wolever, Bechard, &

Snyderman, 2014). Given the importance of patient engagement, the growing evidence of its ability to

improve physiological health outcomes, the suspected effect on psychological outcomes, defining

engagement is critical to any future research. Hence this thesis will engagement a-priori and providing

20

 

a model of engagement that explains the use of patient generated health data as a stimulus for patient

engagement.

Precursors to patient engagement were the notions that physiological health and psychological health

are both relevant, and that “illness oriented” medicine is only one part of a wider story of how to treat a

patient (Balint, 1969). Today, an emphasis on quality and safety has “refocused attention on patient

outcomes, even if efforts to ensure more consistently positive outcomes sometimes reduce the

physician’s prized autonomy” (Bardes, 2012, p. 782). Patient engagement is more than just focussing

on psycho-cognitive needs and the patho-physiological needs of the patient and measuring patient

engagement through doctor–patient communication (Kaplan, Greenfield, & Ware, 1989); it is about

radical change in medicine, caused by the shift of the patient role from passive recipient to active

consumer (Bardes, 2012; Bragazzi, 2013; Hood & Weston, 2004). Indeed some scholars are now

suggesting that technology has facilitated a new healthcare paradigm called patient directed medicine

(Tinetti, et al., 2016).

Additionally, patient engagement is also more than just interacting with technology and participative

activities with providers as suggested by the patient generated health data literature. A holistic

understanding would include the healthcare consumer, their peer network, provider, the health system

and the technology. In addition, it has been recognised that the role of the provider is critical in

engagement, as doctors can engage and empower patients through education, motivation and through

interpersonal communication (Dorflinger, Kerns, & Auerbach, 2013). Hence this thesis will clarify the

providers’ role when utilising PGHD.

Engagement Lexicon

The dearth of academic and grey literature on patient engagement makes it difficult to identify a single

definition of engagement. Patient engagement is a nebulous term and used interchangeably with

involvement (Greenfield, Kaplan, & Ware, 1985) activation (Hibbard, et al., 2004), participation (Street,

Gordon, Krupat, & Kravitz, 2005) and empowerment (Fumagalli, et al., 2014), and there is an

“inconsistent use of terminology regarding patient engagement overall” (Prey, et al., 2014, p. 742). A

recent systematic review of health literature addressed the issue by developing a conceptual framework

for these key health terms. Fumagalli et al. (2014) posit that engagement is part of a bigger concept:

patient empowerment. This is a definitive work in this academic space and this can be applied to the

collection use of patient generated health data in this research. Figure 2.1 highlights the key concepts

and relationships under investigation in this study. As suggested below, engagement relates to health

consumer involvement and participation with empowerment as a potential outcome of and engagement

process.

21

 

Figure 2.1 Patient empowerment and related concepts (Fumagalli, et al., 2014)

In accordance with these authors, this research focuses on the process, emergent state and behaviours of

engagement, participation and involvement. Based on the consumer engagement literature, the

Fundamental Propositions by Brodie, et al. (2011) and the model by Fumagalli, et al. (2014) Patient

Engagement in this thesis is defined as:

An emergent state of the patient that occurs within a dynamic service process between the patient,

the healthcare system, the patient’s network and the use of patient generated health data.

Engagement is characterised by a patient’s intrapersonal and interpersonal self-involvement in

activities determined by themselves and their peer network and interpersonal participation in

activities co-created with individual providers in the healthcare system. Patient engagement is

most effectively evaluated through the relevant physiological, cognitive, emotional, and

behavioural outcomes as an end state, although this will be dynamically influenced by the service

process over time.

22

 

This definition is partially supported by health literature with Simmons, et al. (2014) suggesting

engagement is “(1) understanding the importance of taking an active role in one’s health; (2) having

knowledge, skills, and confidence to manage health/chronic conditions; and (3) performing health-

promoting behaviours” (p.9), highlighting cognitive, behavioural and physiological outcomes. This

thesis extends the definition to include emotional outcomes.

For this research, the related terms of involvement and participation also require definition and in this

thesis are considered the two parts of the engagement process. Involvement and participation are distinct

concepts (Brodie et al., 2010; Fumagalli et al., 2014) and although these concepts overlap, Wolf-Wendel

et al. (2009) suggest participation places an emphasis on the organisation; whereas involvement is the

responsibility of the consumer. This research aligns with Fumagalli et al. (2014) characterising

involvement as determined by both patient and doctor separately, however in accordance with the

objectives this thesis will focus on consumer involvement. Indeed doctors self-determined involvement

is beyond the scope of this research. Hence, this thesis defines Involvement when using PGHD as:

The act of gathering clinically relevant health data and associated activities by any healthcare

consumer. The healthcare consumer determines self-involvement, independent of the doctor with

themselves and their peer network and it can be and measured through physiological outcomes,

cognition, emotion and self- involved behaviours.

Participation can also observed through physiological outcomes, cognition, emotion and behaviours but

implies providers and consumers working together. This thesis defines the closely related term

Participation as:

The act of using patient-initiated or doctor-requested patient generated health data in clinical care

or in the peer network by any healthcare consumer. The healthcare consumer co-determines

participation with the doctor and it can be and measured through physiological outcomes,

cognition, emotion and participative behaviours.

The Engagement Model for This Research

Integrating the relevant theory and the key terms this thesis now presents a conceptual understanding of

Patient Generated Health Data collection and use as a Stimulus for Patient Engagement in Figure 2.2

that underpins this research. This will be used to guide Research Question 1, providing a framework

composed of physiological, cognitive, emotional and behavioural outcomes which will guide qualitative

coding and thematic analysis. While the physiological health outcomes are integral in the exploration of

patient generated health data this thesis will focus on the cognitive, emotional and behavioural outcomes

23

 

whilst referencing relevant potential physiological health outcomes which will need to be tested in future

research.

Figure 2.2 Patient generated health data as a stimulus for patient engagement

In summary, this thesis defines engagement a priori as the emergent state of the patient that occurs

within a dynamic service process between the patient, the healthcare system, the patient’s network and

the use of patient generated health data. Engagement will have relevant physiological, cognitive,

emotional, and behavioural dimensions and is characterised by a patient’s interpersonal participation in

activities co-created with individual providers in the healthcare system; intrapersonal and interpersonal

involvement in activities determined by themselves and their peer network. Engagement is influenced

by situational conditions and patient, network, provider heterogeneity. Hence this thesis recommends

engagement will be composed of physiological, cognitive, behavioural and emotional outcomes as seen

in Figure 2.3, although the emotional outcomes have not been confirmed in a patient population.

24

 

Figure 2.3 Categories of engagement outcomes for PGHD use

To bridge the conceptual and practical, evaluating current patient engagement implementation strategy

is required. The next section of the review seeks to understand how engagement has been fostered in

clinical care with patient cohorts.

A Process Model of How to Use Patient Generated Health Data for Patient Engagement

Patient engagement is typically implemented by providers to achieve better health outcomes for patients

(Grande, Faber, Durand, Thompson, & Elwyn, 2014). Many expert opinions have linked patient

engagement to patient generated health data (Ahern, et al., 2011; Huba & Zhang, 2012; Shapiro,

Johnston, Wald, & Mon, 2012; Van Doornik, 2013; Washington, 2014), and it has been suggested “a

patient engagement system that is largely automated and based on patient-reported data could improve

interaction between provider and patient” (Boland, 2007).

A recent systematic review by Prey et al. (2014) on patient engagement implementation in hospital

settings is relevant for this thesis. This review is based on a limited number of studies and has flaws this

thesis will address. The authors identified 17 studies describing patient engagement in hospital based

clinical care. The digital interventions were then grouped into five categories: entertainment, generic

health information delivery, patient-specific information delivery, advanced communication tools and

personalised decision support. The constructs determined were explored not through an a priori

theoretical framework, but merely suggest categories of use, such as entertainment, generic health

information; hence the paper lacks an overall conceptual coherence. The authors note patient

25

 

engagement research is nascent and “future research would benefit from the development of an

ontological framework for describing and measuring patient engagement” (p. 748), which is exactly

what this thesis aims to do through defining engagement and developing the model Patient Generated

Health Data as a Stimulus for Patient Engagement (Figure 2.2). Furthermore, this thesis addresses this

gap by suggesting engagement outcomes can be observed as physiological, cognitive, emotional and

behavioural.

Past research has shown that information exchange is central to patient engagement and was found to

be present in all categories. Even the games that were grouped into the category of entertainment, in

addition to providing distraction (Kato, 2010; Redd et al., 1987) offered healthcare consumers and

opportunity to “communicate privately and … voice personal concerns without the burdens of face-to-

face or real-time conversation” (Prey et al. 2014, p.744). Noting the importance of information exchange

to patient engagement and recognising this research is grounded in the use of patient’s digital

information in clinical care, this thesis builds on Grande et al. (2014) who stipulate that engagement is

only valuable when enacted into practice. The authors provide a classification of practical patient

engagement based on information exchange where the provider supplies the information (Figure 2.4).

Figure 2.4 Classification model of patient engagement (Grande et al., 2014)

The three-step model by Grande et al. (2014) aims to instigate collaboration as a form of engagement in

clinical care, akin to ‘participation’ according to Fumagalli et al. (2014), through the provision of

26

 

information such as a leaflet and then an activity task around that information. This model of patient

engagement is useful; however, proactive patients are also initiating the provision of information by

collecting data. As such adapting this model to include the collection and use of patient generated health

data and the behavioural outcomes of involvement and participation is useful as a starting point in this

research (Figure 2.5).

Figure 2.5 A model integrating PGHD in clinical care

As demonstrated in extant health literature, little is known about the data from the perspective of the

patient or carer and this research foregrounds the perceptions of those two groups, justifying a services

marketing approach. A comprehensive understanding of how healthcare consumers’ use of patient

generated health data is still unknown. Additionally, the implications these have for engagement, and

even how to define engagement is still illusive. This thesis will address these gaps and ask the following

research questions:

Research Question 1: How is patient generated data used and how does it influence patient engagement?

To date, research on patient engagement has narrowly focused on the health benefits of PGHD and little

research has investigated the holistic use or value of the data for the healthcare consumer. As the health

literature often neglects the patient perspective, the consumer’s view of the collection and use of PGHD

and patient engagement needs exploration. As healthcare is both a process of healing and a service

encounter, service marketing literature can be used to understand the patient perspective and service

experience (Zeithaml, Bitner, & Gremler, 2006). Furthermore literature shows that value-based

assessments drive healthcare quality measurement (Porter, 2010). As SD Logic provides a value-based

foundation, it is used as a starting point to understand the consumers’ perspective in this research and is

explored in the next chapter.

27

 

2.4 Service Dominant Logic

The theoretical foundations of marketing have fundamentally changed over the last two decades. In their

paper ‘Evolving to a new dominant logic for marketing’ (2004) Vargo and Lusch hailed a new era

beyond the existing boundaries of products and exchange. Importantly, they made the distinction

between service, service systems and service science, which are useful propositions in this thesis and

provide context for this research. The authors conclude that there are three interrelated components to

the overview of service research, with (2) the relevant statement for this thesis:

(1) Service, [is] the application of competences (such as knowledge and skills) by one party for

the benefit of another, is the underlying basis of exchange; (2) the proper unit of analysis for

service-for-service exchange is the service system, which is a configuration of resources

(including people, information, and technology) connected to other systems by value

propositions; and (3) service science is the study of service systems and of the co-creation of value

within complex configurations of resources. (2008, p. 145)

SD-Logic transformed the traditional good-based view of marketing and shifted emphasis from tangible

objects to intangible value. This extends the notion of services marketing, which had been

conceptualised for “activities and services” like healthcare, entertainment and air travel (Solomon,

Surprenant, Czepiel, & Gutman, 1985). Value is derived from the service or good ‘in-use’, meaning it

is not based in the goods or service themselves but the determination of the value when used (Woodruff

& Flint, 2006). Value has been recognised as an “essential component of the foundational premises of

marketing” (Vargo & Lusch, 2008, p. 7) and critical for the competitive advantage of a firm (Woodruff,

1997). Recent research suggests value can be co-created between supplier, consumers and other

stakeholders in a network of interactions (Akaka, Vargo, & Lusch, 2012; Grönroos, 2008; Payne &

Storbacka, 2008; Thomke & Von Hippel, 2002) and through value propositions (Payne & Frow, 2011;

Vargo, 2008). It can be created in complex multi-stakeholder networks that recognise roles and utilise

resources (Akaka, et al., 2012; McColl-Kennedy, et al., 2012).

This thesis is concerned with the updated Foundational Premises (FP) of SD Logic (see Appendix B).

In particular this research takes guidance from FP6: “The customer is always a co-creator of value:

There is no value until an offering is used—experience and perception are essential to value

determination (Vargo & Lusch, 2004). The closely related term of co-producer is not used in this

research. Co-production reinforces a goods dominant perspective and suggests a supplier prescribed

interaction (Payne & Storbacka, 2008), although it is recognised that co-production can be part of the

larger co-creation process. Indeed initial concepts of co-production focused on the benefit for the

supplier, with customers becoming partial employees (Mills & Morris, 1986) and product and service

28

 

innovators (Desouza et al., 2008; Sawhney, Verona, & Prandelli, 2005). While co-production offers

greater opportunity to discover customer needs (Lusch & Vargo, 2006b; Payne & Storbacka, 2008), it

is predominantly viewed from the firm’s perspective. This thesis uses the perspective of the patient and

carers as consumers and hence uses value co-creation as explained later in this literature review.

This research emphasises the consumer-determined value and consumer integrated resources. With

access to greater resources, patients are now creating value, then trying to integrate these resources into

the service interaction in healthcare through co-creation (McColl-Kennedy, et al., 2012; Nambisan &

Nambisan, 2009; Robertson, et al., 2014). Incorrectly used resources and incompatible values can lead

to dissatisfaction in the service encounter (Plé & Cáceres, 2010; Solomon, et al., 1985) and reduced

wellbeing (Smith, 2013). This thesis seeks to understand the management of consumer resources utilised

in the process of value co-creation in multi-stakeholder networks of patient, carer and doctor.

2.5 Value

Despite being difficult to conceptualise (Woodall, 2003), modern notions of value are an assessment of

benefits weighted against sacrifices (Keeney & Raiffa, 1993; Zeithaml, 1988), modes of behaviour

(instrumental values) that achieve end states (terminal values) (Rokeach, 1973) or utilitarian and hedonic

appreciation of objects of consumption (Babin, Darden, & Griffin, 1994). Additionally it can be

described as a firm-provider process where one or more stakeholders is better off as a result of the

interaction (Grönroos, 2008). Value enables the firm to be financially better off (Grönroos, 2008;

Grönroos & Helle, 2010) and can increase the wellbeing of the consumer (Vargo & Lusch, 2008). Using

the comprehensive customer-centric framework Woodruff (1997) argues that “customer value is a

customer’s perceived preference for and evaluation of those products’ attributes, attribute performances,

and consequences arising from use that facilitate (or block) achieving the customer’s goals and purposes

in use situations” (p.142). Essentially value is the fulfilment of desires and goals versus the loss to

achieve those goals and it is “experientially and contextually perceived and determined by the customer”

(Grönroos, 2011, p. 293), hence this thesis focuses on the experiential value of PGHD data.

An early conceptualisation of value in healthcare focused on unidimensional measure of quality within

a multi-attribute attitude framework and as a cognitive functional process involving a trade-off between

benefits and sacrifices (Choi, Cho, Lee, Lee, & Kim, 2004). With universal healthcare subsidies, the

benefits versus sacrifices conceptualisation of healthcare is potentially flawed and successive authors

broadened their scope to include multi-dimensional measures (Teke et al., 2012) and other notions of

sacrifices like time and effort (Chahal & Kumari, 2012). Further, value-in-use concepts suggest

experiential values are “interactive relativistic benefits a consumer expects from a particular set of goods

and services and a comparison between perceived quality and perceived cost (monetary and non-

29

 

monetary), and further influences decision-making” (Chahal & Kumari, 2012, p. 723). Zainuddin,

Previte, and Russell-Bennett (2011) define value for the patient as an interactive relativistic preference

experience and their findings also suggest value constructs overlap with ‘control’ being both functional

and emotional. Hence, in line with these authors and Holbrook (1994), the approach to value in this

thesis is meta-normative, concerned not with “making value judgments but rather with analysing the

nature of value” (p.5). This is the view of value used in this research and this thesis seeks abstracted,

experiential constructs of value for patient generated health data, but acknowledges they will be

overlapping, relativistic and heterogeneously preferential, and may only be relevant to healthcare when

PGHD is used.

Themes in Healthcare Value Assessment

The most common value assessment themes in healthcare are functional, emotional and social value.

The addition of transactional value highlighted by scholars suggests a division between the service

outcomes and relational or transactional nature of the service relationship (Chahal & Kumari, 2012).

Further to this the construct of self-determination is already present in studies, however it has not been

recognised in any extant literature as a construct within itself. This thesis recognises that self-

determination is relevant to the proactive patient who implements their perspective into healthcare

experiences via PGHD and hence it is a construct to be explored.

Functional Value

Choi, et al. (2004) recognised that functional value and emotional states of satisfaction produce

behavioural intention to reuse a service and recommend the service to others. Functional value is the

value a patient receives from the diagnostic processes, explanations, treatment results and has also been

described as the quality of the physical facilities, time spent waiting and healthcare technologies (Dodds,

et al., 2014). Other notions of functionality are technical efficiency (Chahal & Kumari, 2012), with

Ekrem and Fazil (2007) measuring installation of the facility, quality, price and professionalism. Lee

and Lin (2011) empirically confirmed Holbrook’s (1999) eight types of consumer value with functional

value described as efficiency value. Attributes included quality facilities, attitude and courtesy of the

staff, convenience to home, waiting time, administrative procedures and registration leading which

influenced the higher order values of feeling at ease, satisfaction and convenience. Functional value was

the primary theme under which the benefits versus sacrifices was explored being described as acquisition

value or money’s worth for a reasonable price (Chahal & Kumari, 2012) taking into account the quality

of installation of the healthcare environment (Teke, et al., 2012). Many of the early conceptualisations

of functional value included relationship attributes of service workers, however literature now suggests

this is a distinct experiential category described as transactional value (Chahal & Kumari, 2012).

30

 

Transactional Value

Chahal and Kumari (2012) conceptualise customer perceived value as a multidimensional concept with

transaction value being “psychological satisfaction or pleasure gained from a deal or transaction or

during the service delivery” (p.170). The term is not widely expressed as transactional value in the

healthcare value literature, but has been described as professionalism (Teke, et al., 2012) and quality of

care (Dodds, et al., 2014) including concepts like partnership, empowering knowledge and expertise,

education and co-learning, support, empathy, caring and congruence. Transactional value is relevant to

the proactive patient, because it supports the processes of the engaged patient and can explain the value

they receive when working in partnership with providers.

Emotional Value

Recognising healthcare services are not purely functional, Ekrem and Fazil (2007) included the

functional, emotional and social value of healthcare. These authors expressed a larger notion of value in

healthcare that incorporated emotional elements reflecting patient–centeredness and the patient’s desire

for novelty, control and hedonics, common in other service experiences. The emotional aspects of

healthcare value have been well-recognised. Zainuddin et al. (2011) describe reassurance ‘peace of

mind’, suggesting that voluntary breast screening provided women with an increased sense of control

and management “that allows an individual to feel that they have done all they can to avoid any negative

consequences” (p.371). Control is relevant for the proactive patient, however unlike these authors who

conceptualise control over illness, this thesis suggests control will be expressed as control over a health

situation and the healthcare system. Furthermore Dodds et al. (2014) recognise play and the aesthetic

quality of a complementary alternative medicine healthcare facility are important and this research has

grouped these into the experiential emotional value of healthcare services based on their ability to

produce a hedonic reaction. Whilst aesthetic and hedonic experiences are not expected with PGHD, they

will be explored and this theme is relevant to proactive patients seeking to gain partnership with

providers in credence services.

Social Value

Patients are connecting in online and offline networks (Kanthawala, Vermeesch, Given, & Huh, 2016)

collecting health information through mobile technology (Whitehead & Seaton, 2016) and altruistically

sharing medical information (Spencer, et al., 2016). It is in this context that patient generated data

emerges as a signature of the engaged patient (Shapiro, 2012) and scholars have examined the social

value of the data. Social value is discussed in the literature in three ways. Firstly, it relates to social

esteem, obtaining prestige for the patient and status relating to the hospital’s reputation in the context of

developing countries (Lee & Lin, 2011; Teke, et al., 2012). Secondly it is motivated by an intrinsic

desire to be part of an interactive community, altruistically help others, be an influencer and produce a

greater sense of self-responsibility (Dodds, et al., 2014; Zainuddin, et al., 2011) and thirdly it relates to

31

 

“open interactions with friends, relatives and other patients which can make the patients feel relaxed”

(Chahal & Kumari, 2012, p. 171). Altruism and social support are relevant to the use of patient generated

health data and hence the social value will be explored in the context of this thesis.

Self-Determination Value

Lee and Lin (2011) empirically confirmed Holbrook’s (1999) eight types of consumer value of

efficiency, excellence, status, esteem, play, aesthetics, ethics and spirituality on healthcare institutions.

Interestingly they included ethics and spirituality as value outcomes. While these inclusions are

culturally specific and relevant to their cohort in Taiwan, their assertion that these findings “serve as an

important reference for the healthcare service industry” (p.722) is accurate. In addition to the thematic

grouping of functional, transactional, social and emotional, their research provides the first example of

a new construct this thesis describes as ‘self-determination value’, a value that arises when patients

confirm and integrate their beliefs (cognitive, spiritual or other) into healthcare services, asserting a

degree of control over a health care situation or the healthcare system, congruent with psychological

empowerment (Zimmerman, 2000). While Dodds, et al. (2014) noted spiritual value and ethics, this

thesis groups these concepts into self-determination value for the purposes of this research and this will

be explored for patient generated health data adding the construct as a new experiential value relevant

to healthcare services.

Previously value in healthcare for the provider was focused on outcomes versus cost of managing a

specific condition and co-created with patients by “combined efforts over the full cycle of care” (Porter,

2010, p. 2477). Current literature suggests value for the patient is experiential; hence this thesis seeks

higher order value constructs for patient generated health data and acknowledges they will be

overlapping, relativistic and heterogeneously preferential. Authors have documented functional value

(Chahal & Kumari, 2012; Holbrook, 1994), transactional value (Lee & Lin, 2011), social value (Dodds,

et al., 2014; Nambisan & Nambisan, 2009; Teke, et al., 2012) and emotional value (Sweeney & Soutar,

2001; Zainuddin, et al., 2011) when measuring value in a healthcare context. Analysis of the literature

suggests a fifth, the emergent constructs of Self-determination Value (Dodds, et al., 2014; Lee & Lin,

2011) which also includes self-advocacy for ethics, spirituality and personal perspective within the

healthcare service. Current literature on functional, transactional, social, and emotional and self-

determination value in healthcare are shown in Table 2.6 Healthcare Value Conceptualised into Five

Domains. These constructs will be explored in the context of patient generated health data answering:

Research Question 2: What is the experiential value of patient generated health data in healthcare

services for a patient and how does it reflect the five domains of functional, transactional, social, and

emotional and self-determination value?

32

 

Table 2.6 Healthcare value conceptualised into five domains

Authors Value Definition Functional Transactional Emotional Social Self-Determination

Choi et al. (2004)

Cognitive trade-off between, perception of benefit and sacrifice

FUNCTIONAL Quality Money paid

- - - -

Ekrem & Fazil (2007)

Customer utility, perceived benefit relative to sacrifice psychological price, worth and quality

FUNCTIONAL Installation Quality Price Professionalism

- EMOTIONAL Novelty Control Hedonics

SOCIAL

-

Lee & Lin (2011)

The interactive relativistic benefits a consumer expects from a particular set of goods and services and a comparison between perceived quality and perceived cost (monetary and non-monetary), and further influences decision-making.

EFFICIENCY Satisfied Hospitals’ public facilities Simple and safe transaction process Numerous service Fast and convenient service process Easy searchable service information

EXCELLENCE Well-equipped hospital facility Well-trained medical professionals Medical professionals warm-heartedness Reasonable charge Worth the money ESTEEM Endeavoured medical professionals for solving problems Enthusiastic medical professionals for solving problems

PLAY Warm atmosphere Fun treatment experience Enjoyable treatment experience AESTHETIC Attractive décor Comfortable treatment experience

STATUS Hospital’s reputation Medical professionals’ Reputation

ETHICS Outpatient services over patent medicine Refusing illegal medical professionals SPIRITUALITY Same hospital for outpatient services Same physician for outpatient services

Zainduddin et al. (2011)

Interactive relativistic preference experience

FUNCTIONAL Convenience Control

- EMOTIONAL Control Peace of Mind Behaviour as reinforcement of beliefs

SOCIAL Identification of Self as an Influencer ALTRUISM Benefit of Behaviour to Others

-

Chahal & Kumari (2012)

Consumers’ overall assessment of product/services utility based on benefits and sacrifices

EFFICIENCY Explanation Diagnosis Technical efficiency ACQUISITION Money’s worth Services at reasonable price Qualitative services Latest technology

TRANSACTIONAL Responsiveness (staff) Post-medical treatment Explanation Diagnosis Technical efficiency Personal care Effective medical advice Trust Psychological satisfaction

SELF GRATIFICATION Relief from depressive mood Easing of negative mood Elimination of pain Personalised attention AESTHETIC Physical Facilities Neat & Clean Corridors Clean Washrooms Fresh Apparel Ventilation

SOCIAL INTERACTION Conducive interaction -

Teke et al. (2012)

Perceived value concept is multi-dimensional with sub-dimensions specific to context

QUALITY Well organised service High quality service Better service than others Acceptable results INSTALLATIONS Well operation Well organised Modern establishment Cleanliness Easily found from other places

PROFESSIONALISM Good professional (employees) Up-to-date about new items and trends (employees) Knowing job well (employees) Advice is valuable (from employees)

EMOTIONAL Satisfactory service Favourable opinion (with the view of patient) Happy employees Leaving with inner calm

SOCIAL Preferring hospital (others) Obtaining prestige (for patient) Valuable service (with the view of others)

-

Dodds et al. (2014)

Customer value is ultimately determined and ‘created’ by the ‘user’ during the consumption epitomising value-in-use idea

EFFICIENCY Treatment results Ease of use and customisation Access and waiting times Consultation Time Value for money

QUALITY OF CARE Partnership Empowering Knowledge and Expertise Educational and Co-Learning Supportive, Empathetic and Caring Congruence

PLAY Relaxation, Leisure prescription Leisure participation AESTHETIC Professional Environment

SOCIAL Sense of self Self-responsibility

ETHICS Nature-based Non-invasive SPIRITUALITY Connection god/spiritual or energy force, Holistic Sense of purpose Peace and balance

 

 

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2.6 Value Co-creation

The creation of ‘value’ in a SD Logic has been well recognised, but poorly researched (Grönroos &

Voima, 2013). Early notions of co-creation were a merger of consumer and provider into “An

experience of one… it is not about the firm pleasing the customer….it is about joint creation of value

by the company and the customer” (Prahalad & Ramaswamy, 2004, p. 8). A major division in the

literature is the debate regarding whether co-creation is an all-encompassing process (Vargo & Lusch,

2004) including provider production processes, or is determined by the consumer and can only be

facilitated by the provider in direct interaction (Grönroos, 2011).

This thesis recognises that value creation processes can occur simultaneously in parallel (Payne &

Storbacka, 2008); however, value co-creation can only occur in direct provider-consumer interaction

(Grönroos & Voima, 2013). Value is determined by the consumer and as such providers are facilitators

of customer value. If the firm can “engage with its customers’ value-creating processes during direct

interactions, it has an opportunity to co-create value jointly” (Grönroos, 2011, p. 293) and in doing this

may avoid co-destruction. Essentially value co-creation is not an all-encompassing process (Vargo &

Lusch, 2004) and if there are no direct interactions, no value co-creation is possible (Grönroos & Ravald,

2011). Thus, value co-creation can only occur in direct interaction (Grönroos & Voima, 2013).

Additionally, the customer can also create value independently outside of direct interactions with the

provider (Grönroos & Ravald, 2011). This is the case when healthcare consumers gather PGHD before

the clinical consultation. When the data are used in clinical care with doctors, however, an opportunity

for value co-creation emerges.

Moving beyond the single interaction value is considered to be co-created through co-activities and co-

processes (Vargo & Lusch, 2004). Value is established and determined by the customer (Woodruff

1997) and the provider’s role is the facilitation of the value for the consumer in direct transactions

(Grönroos, 2008). Indeed, a customer-centric view of value creation suggests value can be co-created

by consumers and providers who have value creation roles (Grönroos & Voima, 2013) as seen in Figure

2.6. This model incorporates production and value creation perspectives. It specifies consumer and

provider value co-creation roles and co-creation can only occur in a joint sphere in direct interaction.

An important aspect of this conceptualisation of value co-creation suggests patients are independent

creators of value and can invite others (carers, providers) to join them (Hardyman, Daunt, & Kitchener,

2014). While this thesis contributes to patient engagement and experiential value theory, it draws on

value co-creation to understand the self-involved value creation and participative co-creation

engagement in the dynamic service process resulting in engagement.

 

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Figure 2.6 Value co-creation model (Grönroos & Voima, 2013)

This thesis considers patient generated health data a resource and the collection of data occurs in the

customers sphere as an act of value creation. This is the first step in the value co-creation process. When

healthcare consumers bring PGHD into clinical care they invite providers to facilitate value in the joint

sphere, as the second step in the process. Providers then have an opportunity to facilitate this value as

the third step in the VCC process. Importantly the creation, use and facilitation of the data are distinct

steps, with providers as potential value recipients of the join consumers’ value creation processes as

seen in Figure 2.7.

Figure 2.7 Value co-creation model for PGHD

In the 2014 Special Issue of the Australasian Marketing Journal Healthcare and Service Science, the

majority of articles utilised value co-creation, emphasising the currency and validity of this approach

 

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(McColl-Kennedy, 2014). Value co-creation is relevant for healthcare because it provides a consumer

perspective (McColl-Kennedy, 2014), suggests interactions involve multiple stakeholders much like real

life (Gummesson & Mele, 2010) and provides a way to explore the reduction in information asymmetry

between providers and consumers through new technologies (Barile, Saviano, & Polese, 2014). Value

co-creation emphasises the integration of consumer resources like peer networks and alternative

therapies (Dodds, et al., 2014) even if this means value co-destruction (Robertson, et al., 2014).

Ultimately value co-creation aims to increase the level of participation of the patient (Sharma, Conduit,

& Rao Hill, 2014) which meets the objective of this research.

Value co-creation has been expanded to ‘identify ‘roles’, ‘activities’, and ‘interactions’ that underlie

customer co-creation of value in health care (McColl-Kennedy, et al., 2012). This seminal work

determined Customer Value Co-creation Activities and the Customer Value Co-creation Practice Styles

of Team Management, Insular Controlling, Partnering, Pragmatic Adapting and Passive Compliance.

This study only tells part of the patient-provider story. Fundamental to the success of patient-provider

value co-creation and the use of patient generated health data for patient engagement is the providers’

facilitation of the data, even when it is not requested, which is the case with unsolicited PGHD. The

traditional dyadic exchange is being replaced with networked, multi-stakeholder configurations (Pinho,

Beirao, Patricio, & Fisk, 2014). Aligning with current ideas of value co-creation this research takes the

perspective of the patient, asserts that value is co-created and co-destroyed between multiple

stakeholders (firm, consumers, others) in direct interaction, with parallel value creation processes

through the use of consumer resources like patient generated health data. Hence value co-creation theory

is an appropriate theoretical lens to evaluate this research within the domain of healthcare service

research.

Value Co-destruction

If a natural consequence of interaction is co-creation, then co-destruction is also plausible (Grönroos,

2011). Value co-creation language frames the theory in a positive paradigm that is recognised as a reason

for the lack of literature on co-destruction (Plé & Cáceres, 2010). While authors have previously alluded

to co-destruction indicating if it occurs the interaction should not continue (Jaworski & Kohli, 2006),

few studies have investigated the phenomena. Plé and Cáceres (2010) define co-destruction as a decline

in one of the service systems based on a direct (person-to-person) or indirect action (through resource

integration) where a resource is not used in an appropriate or expected manner. Essentially it can be

accidental (e.g., overuse of front line employees’ time) or deliberate (lying to service providers in order

to seek recompense for a satisfactory service encounter) and results in one party gaining co-creation and

the other experiencing co-destruction. Both parties could experience co-destruction as a result of

misused resources.

 

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Consumer-led co-destruction in healthcare has been investigated for online self-diagnosis and a resulting

typology and corrective actions aimed at protecting patients’ wellbeing (Robertson, et al., 2014). This

type of co-destruction is naturally a first point of exploration in the co-destruction dialogue; however,

co-destruction by the firm also requires investigation. Plé and Cáceres (2010) acknowledge, “the other

service system (the firm) might also misuse these available resources (its own and/or those of its

customer)” (p.432). To date, only one paper has focused on accidental and deliberate co-destruction

propagated by the firm because of the misuse of resources, finding it had an “impact on customers’

wellbeing” (Smith, 2013, p. 1900). This research suggests that consumer-integrated resources like

unsolicited PGHD shared with healthcare providers might also end in co-destruction.

Resource Integration in Value Co-creation

SD Logic suggests that value is co-created in a network of multi stakeholder processes where all parties

assume roles and integrate their own and others’ resources into a process of interactions of service

systems (Lusch, Vargo, & O’Brien, 2007; Lusch & Vargo, 2006a). Resources are either operant

resources (knowledge and skills that act on other resources) or operand resources (tangible and inert

resources that are acted upon). Patient generated health data is an operand resource; however, the ability

to collect the resource is considered an operant skill. Traditionally resources were offered by the firm.

Today proactive patients can integrate the firm’s resources or develop resources through other suppliers,

peer networks and through self-generated activities like the gathering of patient generated health data

(Baron & Harris, 2008; McColl-Kennedy, et al., 2012) independent of the service interaction for use in

co-creation (Grönroos & Voima, 2013). While this research acknowledges what Arnould (2008) defines

as ‘relationship and physical resources’, these are largely beyond the scope of this research. Instead, this

thesis focuses on patient generated health data as an operand resource and how this resource affects

patient engagement in credence services.

According to Aarikka-Stenroos and Jaakkola (2012), customers “may exert a considerable influence

also on the formulation of the value proposition through negotiation and the contribution of their own

resources” (p.23). Recent empirically informed work has observed that resource integration for value

co-creation can be a feature of the consumers’ role, or can occur through others in the network and can

lead to real co-innovation (Mele & Russo Spena, 2010). It has been recognised that customers are able

to integrate resources to meet their healthcare needs and they can relate to context specific outcomes

such as higher quality of life (McColl-Kennedy, et al., 2012). To date, only a small amount of research

has focused on consumers’ integration of resources in value co-creation and thus this thesis adds to this

nascent area.

 

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Value Co-creation and Engagement

Using the lens of co-creation, recent marketing literature has focused on increasing customer

engagement because of the benefit to the firm through customer engagement behaviours like positive

word-of-mouth and feedback (Verleye, Gemmel, & Rangarajan, 2013). With the notable exception of

Jaakkola and Alexander (2014), most papers examine the conceptual foundations and interrelationship

between value co-creation and engagement, without examining the value outcomes for the consumer.

These papers largely focus on consumer engagement behaviours (Verleye, et al., 2013), firm processes

to encourage engagement (Marcos-Cuevas, Natti, Palo, & Baumann, 2016), value alignment (Lessard,

2014) and the resulting economic, social and emotional value for the provider (Piligrimiene, Dovaliene,

& Virvilaite, 2015).

Importantly actor disposition and the institutional logic of the service ecosystem are critical to

engagement as an end state and providers can encourage engagement through the situational conditions.

Actor disposition in this context refers to the ownership of, or access to patient generated health data

and the situational influences the promote or impede the integration of resources (Storbacka, Brodie,

Böhmann, Maglio, & Nenonen, 2016). Where patients are not currently creating data, it can be solicited

by clinicians through practices and processes. Indeed when it is unsolicited it can be inhibited by

clinicians who do not understand the foundational principles by which co-creation engagement occurs

(Jaakkola & Alexander, 2014; Marcos-Cuevas, et al., 2016) causing provider led co-destruction,

impacting on the patient engagement.

This thesis adopts the under-examined perspective of the consumer as the focal actor in an actor-to-actor

service system where all parties can be value recipients. This research suggests that experiential value

is derived through service provider facilitation during co-creation and may result in physiological,

psychological and behavioural end states that provide functional, transaction, emotional, social and self-

determination value for the consumer. Hence, this research suggests the following translation of drivers

of Jaakkola and Alexander (2014) for this context to describe the facilitation behaviours of clinicians

which may result in experiential value for healthcare consumers (see Table 2.7).

 

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Table 2.7 Drivers of consumer value through the co-creation process

Driver Consumer-led Engagement Provider Facilitation Experiential Value

Focal firm-related access

Patients use data to seek more access to healthcare services

Providers allow / solicit data to be used in the clinical care

Functional Value

Ceding Control Patients use data to seek self-determination within the healthcare

Providers use data / solicit data in the clinical care to understand patient perspective

Self-determination Value

Focal customer-related ownership

Patients owns their own data, increases situation and service system control

Providers include / solicit data in medical record or provide patient portal

Emotional Value

Need for improvement

Patients use data to overcome service limitation

Providers use / solicit data to overcome individual clinicians and health system limitations

Functional Value

Relationship and Communication

Patients use data to improve communication and relationship with clinician

Providers use / solicit data as a focal point within clinical consultations

Transactional Value

Other stakeholder-related support

Patients will use the data to seek social support

Providers use / solicit data with carers defining limitations of data usefulness

Social Value

Value Co-creation as a Cyclical Dynamic Process

A predominant view of co-creation, especially in healthcare, is that value is created through a process

(Payne & Storbacka, 2008; Xie, Bagozzi, & Troye, 2008). As healthcare is often accessed to manage a

condition (e.g. chronic disease management) doctor–patient relationships usually involve a series of

appointments, suggesting a process of service interactions over time. Payne and Storbacka (2008)

emphasise the importance of the process view of value co-creation indicating it “accentuates the need

to view the relationship between the provider and the customer as a longitudinal, dynamic, interactive

set of experiences and activities performed by the provider and the customer, within a context, using

tools and practices that are partly overt and deliberate, and partly based on routine and unconscious

behaviour” (p.85).

Mapping the processes of service encounters between suppliers and consumers is essential to embed co-

creation into the service interaction and offers its own opportunities to understand customer value

aspirations and supplier facilitation practices (Payne & Storbacka, 2008) and offers an opportunity to

explore micro-foundation value co-creation engagement which can be iterated to macro level theoretical

implications (Storbacka, et al., 2016). According to Payne and Storbacka (2008) the encounter process

is the place where value is derived and hence this thesis transposes it onto the Grönroos & Voima (2013)

co-creation model to explore the link between patient generated health data and patient engagement.

This thesis suggests the encounter process is composed of healthcare consumers being involved in value

creation before the service encounter, participative co-creation dictated by the theories of value co-

 

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creation (Grönroos & Voima, 2013) then involvement and participation both result in engagement as an

end state, evidenced through physiological, cognitive, emotional and behavioural outcomes.

A Process Model of How to Integrate Consumer Resources in Value Co-creation

Value co-creation offers a theoretical base to understand how consumer resources, like PGHD can be

implemented into the service interaction. This thesis contends that co-creation is a process and the

consumer can create resources before the service interaction. Resource integration is facilitated by the

provider during the service interaction and will result in either co-creation or co-destruction. A process

model to integrate consumer resources in value co-creation has been developed. This model represents

the service process. This thesis suggests the outcome of the value co-creation process is ‘engagement’.

This is supported by the healthcare literature as demonstrated by the provider’s process where the result

of using PGHD (the resource) is engagement (see Figure 2.8).

Figure 2.8 A model to integrate consumer resources in value co-creation

To understand the consumer’s process, a review of services literature is relevant. Hence the next part of

this thesis will review credence situations literature to understand the factors of the service interaction

that promote engagement. Credence services literature demonstrates key consumer heterogeneity when

using healthcare services. It provides insight into the consumer-provider service interaction at the level

of the doctor and patient. Consumers are not all the same, indeed they have unique motivators and

inhibitors when utilising services and in the age of the proactive may also seek to balance the information

asymmetry by implementing their own resources (Baron & Warnaby, 2011). Hence credence services

literature will be reviewed to develop the theoretical framework for this research.

 

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2.7 Credence Services

Credence services, like healthcare, are primarily defined by the customer’s inability to judge what they

have received before and even after a service is experienced (Darby & Karni, 1973). Credence goods

extend Nelson’s (1970) classification of search and experience goods. Search qualities refer to the

consumers’ ability to inspect the item or service prior to purchase (ex ante). Experience qualities refer

to a category of good or service that can only be assessed after purchase (ex post) and credence attributes

means that a product, but more typically a service, cannot even be assessed post consumption.

Mechanics, financial consultants, lawyers and healthcare providers all fall into this category.

Fundamental to credence services is an ‘information asymmetry’ between the firm and customer. The

firm is the expert and the consumer relies on the expert to both diagnose a problem and provide a service

to solve that problem. Hence the terms, credence goods and credence services, are better understood in

respect to the information available to the consumers and are best termed as ‘credence situations’

(Bloom & Pailin, 1995). Information deficiency means the inexpert consumer has little ability to judge

the service (Emons, 1997). Previously health was characterised by an extreme information asymmetry;

the doctor was all-powerful and the patient a compliant subordinate. However, the proactive patient is

changing this relationship integrating his or her own resources. As such, resource integration provides

a new way to assess the credence situation and as demonstrated by the health literature, patient

empowerment has the potential to affect a provider’s power and autonomy. Hence, reviewing credence

services in respect to resource integration and a consumer’s assessment of the service interaction is

critical to define how the resource integration of patient generated health data may affect patient

engagement and empowerment.

Credence Situations Service Assessment

Research shows that consumers form service assessment ex ante (before the service interaction) and ex

poste (after). It has been suggested that quality assessment primarily occurs through customer

satisfaction after the experiencing service performance (Alford & Sherrell, 1996) although the long-

term customers assessment of credence services is multi-factorial (Grönroos, 1990). Due to intangibility,

inseparability and heterogeneity of services credence quality assessment hinges on meeting expectations

(Pressey & Howden, 2008). Consumers may also use other script-based confirmation in the service

event sequence, which is basically an acknowledgement of whether the service interaction happened the

way it was expected to (Alford & Sherrell, 1996). In general, credence quality service assessment

heavily relies on evaluating the frontline service interactions through a prism of relational factors

between the consumer and provider (Pressey & Howden, 2008).

 

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Not all service encounters are the same and industry specific factors are important in quality assessment

(Powpaka, 1996). Parasuraman, Zeithaml, and Berry (1985) were able to show that satisfaction in

healthcare was directly attributable to the patient perception of the performance of the physician in the

service encounter. Separating the interpersonal quality of the provider and the technical quality of the

service received is necessary to understand the components of satisfaction (Alford & Sherrell, 1996).

Mirabito (2008) differentiated further and dividing the doctor–patient service interaction into the three

grouped factors of interpersonal quality, technical quality and organisational quality: a construct which

pertains to the overall service environment. While this research acknowledges the importance of

organisational cues in the service experience, the focus of this thesis is PGHD and facilitation at the

micro-level of the doctor–patient. As such, organisational factors and technical quality assessment will

be included in the model, but discussed only in relation to patient generated health data with the

interpersonal quality providing a basis for the model. Furthermore, this thesis contends that resource

integration will be an important aspect of credence service assessment, specifically did the firm use or

store the patient generated health data in the way that was expected alluding to service reliability and

confidence.

Evaluation of the Providers’ Process in Credence Situations

Service reliability via heuristic observations of trustworthiness, perceived competence, perceived risk,

empathy and responsiveness is another means of credence service assessment (Galetzka, Verhoeven, &

Pruyn, 2006). Similarly, Lloyd & Luk (2011) considers credence assessment via interpersonal

performance to include trust and other constructs of credibility, persuasion and respect. As such, service

reliability (was the service performed as expected) has a significant effect on customer satisfaction

(Galetzka, et al., 2006) and will be included in the model. Technical capability of the provider and

organisational compatibility of incorporating “the support staff and systems, convenience, and the

physical surroundings” (Mirabito, 2008, p.3), are anticipated to be secondary factors in a resource

integration perspective of credence situations. This is because it is very difficult to assess the credence

situation outcome and thus the technical capability of the service encounter and the focus of the research

is not the organisational quality, but the interpersonal nature of the doctor–patient interaction. However,

what is important in this thesis is the organisations’ ability to integrate the patient generated health data

into the medical record. As such, service reliability, technical capability of the provider and

organisational compatibility are present in the theoretical framework and represent the consumer’s

resource integration assessment.

Consumer Heterogeneity in Credence Situations

Consumers are not homogenous in their ability to acquire resources, integrate resources and assess the

resulting credence service experience (Hyndman & Ozerturk, 2011), especially when technology is used

 

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to gather the resource. Information asymmetry and difficulty in assessment means consumers have

incentive to acquire information for use in credence services assessment. However, literature suggests

consumers’ ability to integrate resources will be affected by the key areas of expertise, perceived

behavioural control, consumer involvement and in their use of technology will grapple with

technological readiness, demographics and situational factors.

Expertise

Expertise is a critical factor in the process of acquisition and use of resources in the service interaction

and is defined as “the amount of domain-specific knowledge acquired through experience or training”

(Reinders, Frambach, Kleijnen, Lee, & Lings, 2014, p. 2). Expertise in the form of ‘client sophistication’

has been shown to affect the expert–novice relationship dimension of quality assessment; power

dimension; atmosphere of relationship; joint personal-relational goals; role of trust; and extent

commitment (Garry & Harwood, 2009). In this study ‘expertise’ is considered in relation to both the

service and the use of technology to gather data and the ability to integrate it onto clinical care. This

thesis aligns with previous research defining expertise into the four categories of (1) all-round novices

(technology novices and service novices); (2) service experts (technology novices and service experts);

(3) technology experts (technology experts and service novices), and (4) all-round experts (technology

experts and service experts) (Reinders, et al., 2014).

Perceived Behavioural Control

Consumer resource integration is heavily influenced by consumers’ belief and ability to perform the

task; a concept known as self-efficacy (Bandura, 1977) and similar to perceived behavioural control

(Ajzen, 1991). Self-efficacy is a cognitive process that links belief in ability to perform the task with the

actual behaviour, and outcome expectations with actual outcome. Indeed self-efficacy has a direct

impact on consumer acceptance and uptake of technology-based self-service in healthcare (Schuster &

Drennan, 2013). Perceived behavioural control extends self-efficacy combining volitional and

behavioural control (Ajzen, 1991). Self-efficacy determines one’s ability to perform the behaviour,

where perceived control relates to one’s control over the ability to perform the behaviour (Ajzen, 1991).

The contention of this research is that the consumer resource collection will lead to resource integration;

this will affect service assessment and ultimately lead to behavioural intention, actual behaviours and

patient engagement. Owing to patient heterogeneity, resource collection will vary between patients and

as such perceived behavioural control will be instrumental in explaining this variance.

Consumer Involvement

Involvement is a key component of a consumer’s attitude as it influences the behaviours of search,

evaluation and purchase intention with increased involvement offering competitive advantage (Blythe,

2009). In the service of healthcare, patient involvement influences self-care activities and this can impact

 

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on health outcomes and service cost. Lorig et al. (1999) found that patients who were involvement in

diabetes self-management improved their health status and reduced hospitalisations. Patients who are

high in involvement cost less to the health system than those low in involvement (Hibbard, Greene, &

Overton, 2013). As such, involvement is an important concept for patient and providers in healthcare.

A further division is that involvement has emotional, cognitive and behavioural components (Harris,

2008). Early conceptualisations of involvement considered it a basic dichotomy: high and low

involvement (Blackwell, Engel, & Miniard, 2001). Involvement was previously identified as one of the

key determinants of engagement. In this thesis involvement is fundamentally about the healthcare

consumers’ involvement in creating the data and using that data in their peer network. This will be

included in the overarching theoretical model.

Technological Readiness

The technological readiness index was developed by Parasuraman (2015; 1988) as a psychological

measure that governs a person’s readiness “to accept and use technologies to accomplish home or work

goals” (Chen, Jong, & Lai, 2014, p. 76). Technological readiness (TR) comprises four measures:

optimism, innovativeness, discomfort, and insecurity with positive and negative dimensions. Lin and

Hsieh (2006) demonstrated that increased technological readiness of users positively influenced their

behaviour intention and the service quality instituting technological readiness is an important driver of

technology adoption and reuse. However, in the study of e-appointments made by patients, Chen et al.

(2014) showed that discomfort and insecurity were not major issues for technology users and they

hypothesised it was due to the ubiquity of Internet use. This finding supports previous research that

endorses each construct in TR may not be relevant when technology is ubiquitous. Despite rapid

increases in uptake, smart phone technology is not ubiquitous. As such TR will be explored in the

context of the collection of PGHD with a view to understand adoption and usage; hence it is included

in the framework.

Demographics

Consumer heterogeneity suggests that demographic factors may be relevant to explain technology

adoption and usage (Eriksson & Nilsson, 2007; Kim, Christodoulidou, & Brewer, 2012; Meuter,

Ostrom, Bitner, & Roundtree, 2003). Hence this research responds to the call by Oghazi et al. (2012) to

explore to what extent customer demographics are responsible for customers’ acceptance of technology

in the service context.

Demographic factors of age, gender, income and education all impact on technology usage. In the study

by Meuter et al. (2003), who clustered responses around the consumer, conflicting results showed

women were higher users of technology in the category of daily user and limited user. Men, however,

were higher users for the categories of travel user and business user. This suggests the type of activity

 

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attached to the technology use may be relevant. Whilst it is generally accepted that gender is no longer

a significant factor in technology adoption, the study of 614 online survey respondents by Kim et al.

(2012) showed that consumers aged 43 years and older were also less likely to use technology compared

with the younger consumers. Literature suggests that these four factors of age, gender, income and

education could be influential in the uptake and use of patient generated health data and as such they are

included in the model, but only age is anticipated to be a relevant variable. Hence demographic factors

are included in the framework.

Situational Influences

In 1974 Belk confirmed that situational variables had a significant influence on consumer preferences.

Waiting time, crowding and time pressure have been identified as important in the decision to use self-

service technology (Dabholkar, Bobbitt, & Lee, 2003). Whilst these situational influences are important

in shopping experiences where self-service technology are used to replace the service interaction, they

are not relevant in the case of the collection of patient generated health data. In the study by Boyce, et

al. (2011) 52% of patients asked a member of their peer network to take images of melanocytic lesions.

Thus, it is highly likely that a relevant situational factor in technology usage for PGHD will be presence

of a parent or carer and this has previously been included in the theoretical framework.

Evaluation of the Provider-Consumer Relations in Credence Situations

The relational phenomenon of the doctor–patient service interactions is a key component of this thesis.

As such this research responds to the call by Guenzi & George (2010) to “understand the complexity of

relational phenomena researchers should develop and test models incorporating multiple relational

antecedents and outcomes” (p.114). The factors of communication and trust are considered to impact

satisfaction in long-term service interactions (Day, Fawcett, Fawcett, & Magnan, 2013), and they will

be incorporated into the theoretical framework.

Communication Style

Communication style is one of the most critical aspects of the firm-consumer relationship in connecting

the two parties within a service interaction (Mohr & Nevin, 1990). Indeed, communication style is

instrumental in establishing customer trust and satisfaction (Webster & Sundaram, 2009).

Communication can be defined as “the provider’s mode of communicating with the customer and

consists of verbal and nonverbal behaviours directed by the provider toward the customer” (Webster &

Sundaram, 2009, p. 105) and has been separated into two broad categories of affiliative and dominant

within services literature. Affiliative can be defined as empathy and attention, where dominance is the

providers’ desire to control the service interaction. Indeed highly dominant communication styles have

 

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been associated with reduced patient satisfaction (Buller & Buller, 1987). Hence the trend in medicine

is towards affiliative communication synonymous with ‘patient-centeredness’.

Trust

Considered critical to complex, rich social connections and important in service relationships (Morgan

& Hunt, 1994) trust is an important and relevant concept in this thesis. Trust is a key mediator between

relational factors and outcomes (Guenzi & Georges, 2010) and is important for overall satisfaction in

credence services where information asymmetry characterises the expert–novice relationship, although

is only significant for consumers low in expertise (Garry & Harwood, 2009). Indeed, trust is critical in

the doctor–patient relationship where a patient literally puts their life in the hands of a medical

professional. As such, this thesis will examine trust as one of the key relational factors contributing to

service evaluation and thus behavioural intention that underpins patient engagement. Hence

communication style and trust are included in the theoretical model.

Resource Integration in Credence Situations

The development of the proactive patients and resource integration is an important topic within credence

situations. To date, literature has not taken a specific ‘resource integration’ approach, locating the

research in specific topics like the knowledge/information acquisition or within the evaluation domains

of the services’ literature. This research fills that gap by developing a resource integration framework

detailing how patient generated health data can be linked to patient engagement, via the service

interaction. Despite the small number of publications, prior research suggests that consumers integrate

resources pre, during and post purchase for risk reduction by evaluating objective information sources

and competitor offerings and to enhance the service they receive (see Appendix C).

In his model of credence services, Emons (1997) recommends that consumers can evaluate market

factors pre-purchase, and this will provide a source of information used for reducing fraudulent

behaviour. Similarly information searches on competitors’ offerings can reduce the risk of overcharging

(McColl-Kennedy & Richard, 2001) especially post purchase in the form of second opinions (Sülzle &

Wambach, 2005). When consumers verify external information, they corroborate the evidence with

objective sources like books and websites, whereas internal knowledge/information is most often

verified with personal networks through word-of-mouth (Mattila & Wirtz, 2002). As such, information

type will be included in the theoretical framework. Patient generated health data falls into the category

of internal information and as such it is highly likely that a consumer’s peer network will be utilised as

an ‘authority’ to support the information acquired. Recognising the contribution peer networks may

have on resource integration, it is incorporated into the theoretical framework.

 

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A Process Model of How to Integrate Consumer Resources in Credence Situations

With the relevant antecedent and relational factors explored, a process view of the patient’s service

assessment can be suggested. When viewing resource integration in credence assessment as a process

before integration, during integration, post integration assessment and post integration behaviours are,

hence a model has been developed (see Figure 2.9).

Figure 2.9 A model integrating consumer resources in credence situations

Co-creation in Credence Services for Engagement

Traditionally healthcare was a place of ‘doctor-knows-best’ where information asymmetry enshrined

the doctor as all-powerful and the patient as a passive recipient, a hallmark of credence services (Bloom

& Pailin, 1995; Darby & Karni, 1973). Aided by technology, patients are seeking to become co-creators

in healthcare and providers can facilitate the patient generated health data to promote physiological,

cognitive, emotional and behavioural outcomes which are examples of patient engagement. For the

interactive engagement process to achieve end state engagement outcomes providers can facilitate

unsolicited data from patients or use service processes to solicit data and this may in turn produce

relativistic end state values for the data experienced by the patient.

Credence services suggests an information and power asymmetry between producer and consumer,

however patient generated health data as a resource alters this asymmetry through a reduction in the

doctors ‘prized autonomy’. Through facilitating the patient value, enacting co-creation, patient

information and presumably power, is promoted with physicians already acknowledging the data

reduces their power and responsibility (Sanger, et al., 2016). Given patient engagement is part of a wider

concept of patient empowerment (Fumagalli et al., 2014) this thesis suspects patient generated health

data will affect engagement and empowerment in credence services which are a direct challenge to the

physician’s prized autonomy (Bardes, 2012). Hence the third research question is:

Research Question 3: How does patient generated health data use influence co-creation in credence

services?

 

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2.8 Engagement and Psychological Empowerment

Empowerment is a term conflated with engagement and patient generated health data in contemporary

literature. Tan et al. (2014) suggested empowerment would be a consequence of generating and using

the data in clinical care, with Fumagalli et al. (2014) suggesting engagement is part of a wider

empowerment process. Indeed, consumer empowerment in healthcare services and patient

empowerment are both important concepts at the heart of medical care, enabling better physiological

and psychosocial health outcomes (Anderson et al., 1995) in the era of the engaged, informed patient.

Initial conceptualisations of empowerment had inter-personal, interactional and behavioural

components, acknowledging that it is contextual, composed of empowering processes and empowered

outcomes (Zimmerman, 1995). More recently it has been suggested empowerment involves the

redistribution of power in relationships through ‘control mutuality’ (Cho & Moya, 2016). A distinction

can be made between community empowerment and psychological empowerment where the latter is

understood through an individual’s experience of the process to reach empowered outcomes. Although

the differences between the process and the outcomes are commonly accepted (Anderson & Funnell,

2010) it is often not well articulated in extant literature (Aujoulat, et al., 2007).

In contrast, patient empowerment focuses on interactions between the patient and physician and has

received attention from both services marketing and health scholars. When the providers’ perspective is

employed, communication between the parties, transferring power to patients and patient autonomy is

considered empowerment (Ouschan, et al., 2000). Alternately when empowerment is viewed from the

patient, in involves skills acquisition for health involvement, self- efficacy for achieving self-determined

goals and a negotiation of autonomy (Prigge, Dietz, Homburg, Hoyer, & Burton, 2015). The thesis

focuses on the latter as “the emergence of a person’s [patients] potential as a result of an empowerment

process, may be viewed as a co-creation, within a true partnership” (Aujoulat, et al., 2007, p. 15) as it

supports the healthcare consumer perspective foregrounded in this research.

In line with Ouschan et al (2000), this thesis contends “the process of empowerment entails helping the

patient to develop a sense of control by educating and encouraging the patient to actively participate in

medical encounters” (p.101). The consensus view is that the process of patient empowerment involves

educating patients, patients participating in their own care and reaching outcomes which achieve a sense

of control over their health situation. Like engagement, empowering processes result in and can be

measured by ‘empowered outcomes’. Although the nature of these outcomes are contextual and

subjectively perceived, extant literature suggests the psychological outcomes of empowerment will

include competence (an overall acquisition of skill, knowledge and self-awareness to manage a

 

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condition), self-efficacy, a sense of coherence about their condition, health literacy and feeling respected

(Bravo et al., 2015). Building on this work and service marketing scholarship by Ouschan (2006) this

research recognises competence, self-efficacy, health system control and health situation control as the

key components of empowerment in this context. Despite engagement and empowerment receiving

critical examination, a deeper understanding of the interrelationship between the engagement process

and empowerment as an outcome is not well understood; hence this thesis will explore this using PGHD.

The literature on the relationship between engagement and psychological empowerment is still nascent,

with contributions from various disciplines including strategic communication, psychology, nursing,

health services and human resources management. Most papers are published within business

management and focus on psychological empowerment as an independent or moderating variable acting

on the dependant variable of work engagement (Cho & De Moya, 2016; Joo, Lim, & Kim, 2016; Stander

& Rothmann, 2010). Within this scholarship two papers suggest the use of resources as a mechanism to

promote empowerment (Quiñones, Van den Broeck, & De Witte, 2013; Van De Voorde, Veld, & Van

Veldhoven, 2016) and only one known paper by Leung (2009) has examined involvement in user-

generated online resources and participation in offline civic engagement for psychological

empowerment. Leung (2009) found that there was a significant positive relationship between user-

generated content involvement and civic participation engagement on the composite dependant variable

psychological empowerment, however it “does not resolve the issue of whether involvement in content

generation online enhances empowerment, or whether empowered individuals choose to participate”

(p.1344).

Perhaps the earliest contribution in the engagement and empowerment literature is important to the

findings in this thesis. In The Continuum of Parental Involvement in Residential Treatment authors

Martone, Kemp, and Pearson (1989) articulate a four step process of engagement-participation-

empowerment-discharge that lead to successful service outcomes in a residential care situation for

children from troubled homes. This article merely documents an existing process where the organisation

promoted involvement and participation as an engagement strategy for increased consumer

empowerment. The use of PGHD to achieve engagement is composed of involved engagement (PGHD

collection), participative engagement (PGHD used in clinical care) with the outcome being

psychological empowerment (emotional outcome). Hence it is reasonable to assume that a model to

describe the engagement→empowerment process can be adapted to this research informed by the work

of these authors and an engagement→empowerment process for this research is demonstrated in Figure

2.10.

 

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Figure 2.10 Provider facilitated PGHD engagement-empowerment process

Hence, in the context of this research, empowerment is then composed of gathering PGHD as an act of

involved engagement, then participative engagement with the provider using PGHD. The patient can be

educated to collect PGHD and then participates in care when the data is used. These steps form the parts

of an engaging process that will influence a patients’ psychological empowerment as an end state

(Leung, 2009; Zimmerman, 1995) which can then be measured by the outcomes of competence, self-

efficacy and control. In order to explore the above process all consumer interviews across both studies

will be coded to answer:

Research Question 4: Does involvement in resource creation and participative engagement in clinical

care promote patient empowerment? If so how?

With the relevant literature and theories reviewed, a summary of the gaps, research questions, and the

theoretical framework is detailed in the next section of this thesis.

2.9 Research Questions, Propositions and Theoretical Framework

This research takes the consumer perspective, acknowledging that co-creation occurs in a network of

stakeholders, processes and resources. A multi stakeholder perspective of doctor, patient and carer is

included after calls from Gummesson and Mele (2010) to make value co-creation research more

complex and representative of real life. Value is determined by the healthcare consumer, facilitated by

the provider in direct interaction, although all can benefit recipients and when the firm facilitates value

it can also be a co-creator (Grönroos, 2011; Grönroos & Voima, 2013). Value can be co-created or co-

destroyed through the integration resources by any stakeholder (Robertson, et al., 2014) and value co-

destruction will impact on system wellbeing (Smith, 2013) and potentially engagement.

This thesis uses value co-creation, credence situations and patient engagement literature to understand

the emerging phenomena of patient generated health data a consumer controlled resource which can be

integrated into healthcare services. This resource is then expected to affect patient engagement, which

is characterised by differing levels of participation with the doctor, involvement in their own healthcare

Consumer is involved in PGHD collection / value creation as a form of 

engagement solicited or unsolicited by provider

Provider encourages / discourages participation 

using PGHD and facilitating / denying value co‐creation and consumer experiences empowering process with 

provider

Consumer experiences empowered outcome

 

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and can be measured by physiological, cognitive, emotional and behavioural outcomes. While the

physiological health outcomes are integral in the exploration of patient generated health data this thesis

will focus on the cognitive, emotional and behavioural outcomes whilst referencing potential

physiological health outcomes relevant to medical photographs. As such, this thesis asks the

fundamental overarching question of how does the use of patient generated health data influence

patient engagement in the context of credence services?

This thesis aims to explore how patient generated health data influences patient engagement by

investigating the perceptions and use of patient-taken medical photographs in clinical care. To address

the gap in the literature this thesis defines engagement a priori and how engagement and empowerment

are linked. As such the overarching research question will be addressed using a services perspective and

includes the following 4 research questions:

Research Question 1: How is patient generated data used and how does it influence patient engagement?

Research Question 2: What is the experiential value of patient generated health data in healthcare

services for a patient and how does it reflect the five domains of functional, transactional, social, and

emotional and self-determination value?

Research Question 3: How does patient generated health data use influence co-creation in credence

services?

Research Question 4: Does consumer resource creation and participative engagement in clinical care

promote patient empowerment? If so how?

Furthermore, a theoretical framework has been developed that responds to Mele and Russo Spena (2010)

agenda to deepen our understanding of the antecedents and implications of resource integration (see

Figure 2.11). The model incorporates a process view of value co-creation (Payne & Storbacka, 2008)

aligned with previous research of a provider-led patient engagement process, a credence situation

encounter process and a patient assessment process. Importantly it incorporates consumer, provider and

relational factors identified as important in credence situations literature and technology adoption and

use factors. The expected contribution of this research is a ‘resource integration’ model for use in

credence services and a better understanding of how patient generated health data can be used by medical

professionals to encourage patient engagement. To explore the research in this thesis a suitable

qualitative methodology has been chosen and will be explained in the next chapter.

 

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Figure 2.11 A theoretical framework for integrating consumer resources for consumer engagement

 

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3.0 METHODS

3.1 Research Paradigms and Approach

Underpinning all research are the basic beliefs about reality, known as ontology, and a concept called

epistemology or “the relationship between that reality and the researcher” (Sobh & Perry, 2006, p. 1194).

When combined with methodology, or the way to explore reality, these three – ontology, epistemology

and methodology – make up the tools researchers use to execute a research agenda (Guba & Lincoln,

1994). Guba and Lincoln (1994) and Sobh and Perry (2006) suggest four scientific paradigms:

Positivism (including Post-positivism), Critical Theory, Constructivism and Realism (including Critical

Realism). This research adopts a critical realism paradigm and the following sections provide a

description of each perspective and a justification for the selected approach.

Positivism asserts that reality is a true, knowable state, that can be isolated and tested through

experimentation and the verification or falsification (Post-positivism) of a hypothesis (Guba & Lincoln,

1994; Mohr, 1982; Sobh & Perry, 2006). This fixed, reductionist approach serves to indicate

relationships between known constructs, offering prediction and control of the natural world, without

capacity to understand in-depth why these relationships exist. Patient generated health data is not new,

but the study of the phenomena is a nascent research area where theory building is required. Edmondson

& McManus (2007) suggest nascent theory “proposes tentative answers to novel questions of how and

why, often merely suggesting new connections among phenomena”. This is the current state of patient

generated health data literature. Given the constructs under investigation are not well known, positivist

theory testing is not appropriate and will not be used as a starting point in this research.

Critical Theory aims to critique and transform the social structures that are exploitative, assumes the

researcher has an a priori position, including them as an active force in the advocacy and emancipation

of those who are researched (Guba & Lincoln, 1994). Reality is “real” but shaped by social, ethnic,

economic, political and cultural forces, formulated throughout history. Conceptualised by Karl Marx

and scholars at the Frankfurt School, in critical realism the researcher is present and transformational in

the process of knowledge production with an engendered position geared toward breaking the social

constructs that subjugate the research participants (Crotty, 1998; Schecter, 2013). Indeed the

researcher’s position is value-laden and hence the findings are value-mediated (Guba & Lincoln, 1994).

While appropriate in many areas of social science research, this thesis does not believe the researcher

hold the position of ‘advocate’ within the social system of research, focussing on the data within the

 

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system and not potential emancipation of the research participants, hence this is not the paradigm

suitable for this thesis.

Constructivism posits that if all knowledge is socially defined, then it is meaningless to attribute

truthfulness (Danermark, Ekström, Jakobsen, & Karlsson, 2002) given that multiple realities can be

observed in a phenomenon differently and all are valid, but a consensus construction is more informed

and sophisticated than other dispersed multiple realities (Guba & Lincoln, 1994). Edward Comstock

(2013) suggests, “rather than being passive receivers of an objectively available external truth,

individual subjects actively construct knowledge through the development of increasing sophisticated

mental structures and by building knowledge on top of previously acquired knowledge” (p. 151). In this

paradigm, the researcher is the expert guiding the researched on technical, practical and emancipatory

levels, but together they will interactively co-create findings, often employing participant action

research methodologies (Perry & Gummesson, 2004). Like Realism the line between epistemology and

ontology dissolves. Features of constructivism are appropriate for this thesis as a consensus construction

may be superior to that of all previous constructs (Perry & Gummesson, 2004). Indeed in this research

knowledge is “elicited and refined only through interaction between and among investigator and

respondents” (Guba & Lincoln, 1994, p. 111); however it is be more accurately defined by a

triangulation of multiple perspectives which the researcher shapes through theory-data-theory iteration

and not purely consensus. Hence constructivism is not selected as the paradigm for this research,

although elements of it are present in Critical Realism.

Sobh and Perry (2006) state that Realism is a paradigm where phenomenologically derived realities are

triangulated for a ‘probably true’ finding. This paradigm asserts that research is “searching towards an

understanding of the common reality of an (economic) system in which many people operate inter-

dependently” (Sobh & Perry, 2006, p. 1199). Further, it posits that social phenomena exists in open-

ended systems which are subject to interpretation and manipulation from the actors that make up the

system, hence they are not quantifiable in the same way as positivism when applied to natural sciences.

Critical Realism, pioneered by Roy Bhaskar (1978), is used to conduct social science research,

especially for research related with policy implications, making it relevant for this research. In line with

Realism, Critical Realism acknowledges that we can only partly understand that which exists and that

the reductionism of science is not appropriate for social phenomena, which is rich, complex, and with

limitless depth. This paradigm is an open stratified system of interacting objects with causal powers

(Bhaskar, 1978; Fletcher, 2016) and can be used to study people, objects and organisations (Edwards,

O'Mahoney, & Vincent, 2014). In Critical Realism, our understanding of reality is partial, and

 

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understood through experiences, the observation of events and their interpretation by the researcher and

an examination of the causal mechanisms relating to the observable experiences (Fletcher, 2016).

Critical Realism researchers adopt an objective ontology (a reality independent of the researcher) while

acknowledging the socially constructed nature of knowledge (a subjective epistemology). This paradigm

incorporates elements of Positivism, belief that there is a reality, and Constructivism, that knowledge is

an interpretation and socially constructed. Edwards et al. conclude “critical Realism holds that an

(objective) world exists independently of people’s perceptions, language, or imagination. It also

recognizes that part of that world consists of subjective interpretations which influence the ways in

which it is perceived and experienced (p. 4).” Hence in critical realism there is a socially constructed

reality composed of objects; it is imperfect, but the development of theory means it can be observed,

inferences made and it can be generalised. Critical Realism defines law-like generalisations or ‘demi-

regularities’ (Easton, 2010) that are derived through iteration between three layers: the Empirical Level;

the Actual Level and the Real Level (see Figure 3.1) with the latter informed by theory (Fletcher, 2016).

Figure 3.1 An iceberg metaphor for Critical Realism ontology (Fletcher, 2016)

Danermark et al. (2002) suggest “if we are to attain knowledge about underlying causal mechanisms

we must focus on these mechanisms, not only on the empirically observable events” (p.5), suggesting

that theory-data-theory interaction is appropriate for Critical Realism guided methodologies. In Critical

 

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Realism, theory guides the research, theories are fallible and a better understanding of theory will occur

after investigation and iteration between these three layers. The methodological implications for this are

that pre-existing theory is used, empirical data is then put through cycles of abduction where the best

explanation is defined (Walton, 2014) and new theories or hypothesis emerge through retroduction back

to existing literature (Fletcher, 2016). This is the approach used in this thesis. The Theoretical

Framework was developed from the healthcare, services marketing and value co-creation literature to

understand the causal mechanisms of patient generated health data for the patient, carer and clinician

interactions. The framework is fallible, and will be updated with new constructs as they emerge from

the data.

Further to this, marketing scholars now emphasise using actor engagement as a basis to empirically

observe co-creation theory (Storbacka, et al., 2016). Fundamentally this will address two issues:

bridging the divide between observable events, through causal actions to theory; and 2) provides

research outputs with more emphasis on managerial implementation. Drawn from strategic management

“actor engagement is conceptualized as a micro-foundation for value co-creation within the context of

a service ecosystem” (Storbacka, et al., 2016, p. 3008), and is aligned with critical realism and the

objectives of this research. Table 3.1 illustrates this rational.

Table 3.1 Critical realism, value co-creation and the current research strategy

Critical Realism (Fletcher, 2016)

Actor Engagement Co-creation (Storbacka et al., 2016)

Current Research Agenda

Empirical Level Actor Engagement Observed Patient Engagement

Actual Level Resource Integration Patterns PGHD integration in Service Ecosystem Real Level Value Co-creation Theoretical Conclusions

3.2 Justification for a Qualitative Paradigm

Patient generated health data is an under-researched phenomenon and constructs, measures and causal

relationships are not well known. As such this nascent and emerging area of research requires qualitative

investigation to establish theoretical constructs, prior to empirical testing (Edmondson & McManus,

2007). This thick, rich description is best done through a qualitative design (Liamputtong & Ezzy, 2005)

and this research will employ a two-stage investigation composed of 1) vignette-led interview study and

2) a mixed methods pre-experiment. Qualitative research can confirm the presence of constructs and

this is the way the word is used in this thesis. This research does not attempted to confirm the magnitude

of each construct which would be require a positivist, quantitative approach beyond the scope and

paradigm of this thesis. Positivist recommendations are beyond the scope and paradigm used in this

thesis.

 

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Study 1 of this thesis used vignette-based semi-structured interviews with patients, carers and doctors

that converged to an imperfect probabilistic reality about patient, carer and healthcare practitioner

generated data. Interviews are the most common method for collecting data in qualitative research and

provide an opportunity to understand the multi-layered nature of the social world posited by critical

realists (Edwards, et al., 2014). A theoretical framework drawn from literature was used as a guide to

understand the causal mechanisms behind the use of the data, and help explain the empirical events

captured through interviews. After a theory-data-theory iteration, the resulting use, experiential value

and engagement were defined. Perceptions about the data defined by Study 1 were then evaluated in a

clinical setting in Study 2. Study 2 used a mixed methods pre-experimental trial that was reported

qualitatively.

3.3 Study 1 Research Design Overview

The first study of this thesis investigated patient, carer and clinician perceptions of doctor-taken

photography and patient generated health data using a vignette. It triangulated the perspectives of the

patient, carer and doctor determining a probably true finding about the use, value and engagement states

elicited by the collection and use of the data. This study was specifically designed to answer Research

Questions 1 and 2.

Research Question 1: How is patient generated data used and how does it influence patient engagement?

Research Question 2: What is the experiential value of patient generated health data in healthcare

services for a patient and how does it reflect the five domains of functional, transactional, social, and

emotional and self-determination value?

Although the use of patient and carer generated health data in clinical care for the clinician has been

explored, literature on the use of the data from the perspective of patients and carers is limited. More

specifically, the literature highlights that clinicians use the data for diagnosis and management (Boyce,

et al., 2011), enhanced clinician–patient collaboration (Pourdanesh, et al., 2012) unintended

consequences like agenda setting (Nundy, et al., 2014a) and this impacts on service delivery time and

costs (Frühauf, et al., 2012). The services marketing literature discusses patient data sharing outside

clinical care in self-diagnosis (Robertson, et al., 2014) and co-creating service design (Elg, Engström,

Witell, & Poksinska, 2012) but fails to explore how patients and carers use the data in clinical care or

how this affects the service of healthcare. This research filled this gap answering Research Question 1

by developing a comprehensive framework for the use of PGHD for the healthcare consumer. To answer

Research Question 2 the underlying value of the data was interpreted by the researcher, evidencing

 

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existing services marketing literature. Lastly cognition, emotions and behaviours of an engaged patient

and carer were summarised for use in Study 2.

Vignette Design

This study employed a vignette (scenario) study design (Finch, 1987) to test attitudes, perceptions and

beliefs (Hughes, 1998), contrasting the perspectives of patients, carers and clinicians. Two vignettes

were developed: one for the collection and use of patient generated health data and one for the collection

and use of clinician-taken data. The first scenario was based on a patient using a mobile phone to take

an image of an unknown rash (Armstrong, 2004). The scenario included health information searching

through Google and sharing the data with family. These additions were added based on a Pew Centre

survey indicating that of the 85% of adults that have access to the Internet, 80% of them gather health

information online, with 55% receiving help from family or friends for medical conditions (Fox, 2013).

The second scenario was based on the use of medical photography by clinicians to monitor skin lesions;

a clinical practice recommended by the Royal College of Dermatologists (Aitken et al., 2008). The

vignettes used in this study were genericised and translatable to primary, emergency and specialist care

contexts and pre-tested with an emergency physician, a dermatologist and a general practitioner for

clinical accuracy. Additionally they were assessed by two expert qualitative researchers in a similar

manner for inter-coder reliability to ensure they were non-leading and realistic (Cho, 2008). The final

scenarios below were used in semi-structured interviews with questions relating to the use, value and

engagement states elicited by the data.

Scenario 1

Tanya wakes up at 3am and is feeling stressed worrying about an assignment that is due for university.

Whilst going to the bathroom, the patient notices an extensive rash covering her face and neck. Tanya

has experienced a mild form of the rash twice since moving to Brisbane, although it has never been this

red, or hot, and it has always disappeared within a few hours. The patient quickly gets her mobile phone,

takes a ‘medical selfie’* and then goes back to bed concerned. In the morning the rash has gone, but

feeling a bit anxious Tanya decides to see a doctor. In preparation for the consultation the patient looks

on the internet at various rashes and collates all information that might be useful. Tanya notes that her

mother is allergic to seafood which can cause a rash and she ate seafood for dinner the previous night.

Tanya’s Dad has a skin condition that looks like a rash. The house the patient is living in has a problem

with mould, which has also been known to cause rashes. Tanya wants to get advice from her family and

decides to share the images with her mother via a multi-media message (MMS) and posts them on social

media to a sister. Tanya then takes the photographs to a doctor and they discuss the condition.

 

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Scenario 2

Tanya is light skinned with many moles as a result of sun exposure. At a follow-up appointment, a

different doctor asks if a skin examination can be performed and suggests that photographing the moles

could help identify any future changes. The examination takes place and no suspicious moles are found.

The doctor then explains the consent process for clinical photography and acknowledges the images will

only be used as directed by the patient. This means the patient can choose if the images are used in their

medical file, for education of other medical professionals or for publication including on the internet.

The doctor has a digital camera and takes a series of shots to include the patients’ arms, legs and face.

The doctor then decides that one mole on the patient’s back requires surveillance and uses a

dermatoscope or close up attachment on a smart phone to take a picture of the mole. This is followed up

by a wide shot of Tanya’s back to show where the mole is located. The doctor says the lesion is larger

than normal, but non-suspicious because the mole edge is smooth. As a precaution the doctor tells Tanya

to watch the mole for changes and sends the close-up image onto a colleague who will follow up with

Tanya in 12 months’ time.

* The use of the term medical selfie was not used after Study 1 as it was deemed inappropriate. It has

been left in the methodology of study 1, but not used in results or discussion unless it was a direct quote

from participants

Sampling Size and Inclusion Criteria

Qualitative research provides the rich complexity required to examine a new phenomenon like patient

generated health data. This form of inquiry is not concerned with statistical representation, indeed it

seeks to evince meaning, not frequency which has implications for sampling (Liamputtong & Ezzy,

2005). Qualitative research uses purposive sampling that “deliberately selects specific individuals,

events or setting because of the crucial information they can provide as the information cannot easily be

obtained through other mechanisms” (Liamputtong & Ezzy, 2005, p. 11). Hence a purposive sample,

also called a ‘judgment sample’ (Patton, 2005) of patients, doctors and carers will be sought in order to

illicit information rich cases through the researcher’s personal contact and a press release delivered to

media outlets via QUT Media.

In this research, participants were required to be familiar with a health condition that could be captured

by photographs. Maximum variation sampling has been used extensively in healthcare research

(Sandelowski, 1995) and in this research was applied by sampling from across the medical sub-

specialities of General Practice, Emergency Healthcare, Surgical Care and Trainee. In addition, all

participants were judged as once-off users, intermittent users and regular users and constant users of

PGHD with the idea of getting participants from all categories. This offered an opportunity to explore

 

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the widest possible attitudes, perceptions and beliefs about the patient and clinician generated health

data for a cohort who understands the implications and complexity of its use.

The sample size used in qualitative research relies on idea saturation where no new responses emerge

to ensure reliability (Liamputtong & Ezzy, 2005; Patton, 2005; Sandelowski, 1995). Indeed as Marshall

(1996) suggests, “an appropriate sample size for a qualitative study is one that adequately answers the

research question” (p. 523), and while that statement might seem obvious it requires constant

consideration during the data collection process. In a similar study that used vignettes-based interviews

to understand the views of the use of therapeutic footwear for people with diabetes-related foot

complications a sample of 15 patients and 15 healthcare professionals was sought (Johnson, Newton, &

Goyder, 2006). The authors also used maximum variation sampling with patients across age, diabetes

diagnosis and treatment type with healthcare professionals varied by primary or hospital based care and

profession. Hence this research employed the same approach and aimed to interview 30 participants.

Data Collection Procedure

Interviews, considered a special conversation between the researcher and interviewee (Liamputtong &

Ezzy, 2005), were used in this research to illicit responses to the vignette and were chosen for a number

of reasons. Firstly semi-structured interviews are good for collecting attitudes, perceptions and beliefs

(Barriball & While, 1994), especially when the research topic is nascent and complex (Liamputtong &

Ezzy, 2009). They allowed the researcher to view the social world of the participant in a confidential

manner and are good for behavioural phenomena (Neuman, 2002). This is unlike a focus group where

the participant is removed from that social world and traditional roles (e.g. doctor and patient) that may

influence responses (Edmunds, 2000). Indeed one-on-one interviews provide an opportunity for

intimacy with the goal of mutual self-disclosure (Liamputtong & Ezzy, 2005). Secondly the nature of

semi-structured interviews provides the researcher with the flexibility to ask the same questions in

different ways, tailoring the language to the level of the participant (Barriball & While, 1994). This

element was considered critical to interviewing patients, carers and clinicians with heterogeneous

demographics.

The semi-structured interviews were conducted using introductory questions to build rapport, then direct

and probing questions to discover attitudes, perceptions and beliefs based on Scenario 1 and Scenario 2

(Liamputtong & Ezzy, 2005). The wording of each interview was slightly different based on the

participants’ role as patient, carer or clinician, however the scenarios are read verbatim, ensuring each

study group was providing a perspective on the same phenomena. Where participants explained personal

medical histories without reference to patient or carer generated health data, the interviewer asked the

participant to contextualise the information to the data under investigation. See Appendix D for a sample

interview. Participants were invited to attend a confidential in-depth interview located in a private room

 

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in Queensland University of Technology (QUT), or by phone interview if participation in person was

not practical. Participants were provided with an overview of the study, the interview schedule and were

asked to read and sign the QUT Ethics Approval Form to provide consent to participate. Care was taken

to ensure the participants knew that the interview could be stopped at any time, and if they experienced

discomfort the interview could be terminated. Confidentiality, privacy and anonymity were discussed,

as were the mechanics of recording the interview using an audio recorder. Participants were notified that

the interviews would be seen by the principal investigator, the supervisory team and a transcription

service.

Data Analysis

This thesis aimed to provide a broad understanding of patient generated health data offering insight into

as many constructs as possible and uses emergent coding “to avoid imposing words or concepts that

might prevent the researcher from seeing the data in a new way” (Tolley, Ulin, Mack, Robinson, &

Succop, 2016, p. 179), hence in Study 1 a grounded emergent approach aligned to a theoretical

framework. The researcher employed a continual re-examination of data in the light of developing

conceptual relationships, using a constant comparison technique between the data, the a priori

knowledge and alternative explanations to ensure rigor (Glaser & Strauss, 1999). This was done using

a grounded approach allowing the codes to emerge from the data. These codes were then interpreted

through the overarching theoretical framework and grouped into themes for each research question. To

analyse the data, the researcher iterated between data, theory and other possible explanations through

intercoder reliability checks. This approach was taken to ensure new constructs about the phenomena

were not restricted or omitted by a preconceived schema. The interviews were analysed for meaning

(Kvale, 2008) using a five step process: 1) gaining familiarity through reading all transcripts, 2) data

reduction via coding, 3) data reorganisation through thematic analysis, 4) data representation in through

graphics, and 5) discussion of the key considerations (Flick, 2013; Tolley, et al., 2016).

1) Reading the Transcripts: Initially the interviews were transcribed and formatted into Microsoft Word

removing filler words like ‘er’ and ‘um’ to improve continuity of the expressed sentiments. The

interviews were read over once to gain insight into the data (Fletcher, 2016; Flick, 2013; Tolley, et al.,

2016).

2) Data Coding: Open coding (Corbin & Strauss, 2008) was applied to each interview in the Microsoft

Word format. Interview sections that include medical histories without reference to the data were coded

as “Back Story” and not included in the codebook. This ensures the coded information was relevant for

the study. To improve rigor coding was be applied to each interview a second time in nVivo and then

was placed into Codebook 1 Open Coding (Appendix E) using the overarching framework for thematic

 

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analysis. This twice coding of the data allowed the concepts to be developed and refined through the

entirety of the transcripts and this occurred with every piece of the data (Fletcher, 2016).

3) Data Condensing: All codes were grouped into themes or “demi-regularities” (Easton, 2010) by the

researcher in a process of abduction to determine the use of patient, carer and clinician generated data.

(Q1, Contribution 1). Themes were based on the a priori patient generated health data literature and

emergent constructs. All codes were placed into the categories defined in the Theoretical Framework

and grouped into themes. Codes that were present in the data but not discovered during the literature

review were implemented; codes that are present in the literature, but not discovered in the data were

removed. These were interpreted by the researcher through retroduction (Fletcher, 2016) into known

and emerging constructs of value within the services marketing literature (Q3).

4) Data representation: The results were presented graphically in the thesis; in particular the theoretical

framework was updated to include new emergent constructs.

5) Discussion: The results of Study 1, included summary quotes, were described in relation to the

Research Questions 1-3. A final summary of contributions and an explanation of how Study 1 results

inform Study 2 was provided.

3.4 Study 2 Research Design Overview

Research into patient generated health data in an actual clinical setting is nascent and does not take into

account the use of the data from the perspective of the healthcare consumer. While the first study in the

thesis explored perceptions of patient generated health data, the second study investigated the actual

experience of the data in clinical care. Study 1 proposed a theoretical explanation of use, experiential

value and engagement. In Study 2 the methodological fit of the research moved from nascent to

intermediate and in line with other studies in healthcare research (Clark, 2010; Holtrop, Potworowski,

Green, & Fetters, 2016) a hybrid mixed methods approach was employed to propose relationships to be

explored in future research. This mixed methods approach was used to determine if and how parent

generated health data affects patient engagement within the clinical setting and was triangulated with

information from Study 1. This study was specifically designed to answer:

Research Question 3: How does patient generated health data use influence co-creation in credence

services?

Research Question 4: Does consumer resource creation and participative engagement in clinical care

promote patient empowerment? If so how?

 

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Pre-experimental (one intervention group) and quasi-experimental (one intervention group and one

control group) research designs are useful when a phenomenon cannot be separated from its context and

are employed in social science disciplines to evaluate the outcome of interventions like counselling for

children experiencing family disruption (Abel, Chung-Canine, & Broussard, 2013). Both experiment

types are good at testing interventions, obtaining trial data and advancing theory building (Thyer, 2012)

which are all objectives of this thesis. Indeed “they are sufficiently versatile as to be useful in the

evaluation of virtually any psychosocial or medical intervention,” (Thyer, 2012, p. 24) regardless of the

theoretical basis. Thus, a pre-experimental trial was registered through the Australian and New Zealand

Clinical Trial Register (ACTRN12616000998448) and used in Study 2 to explore the use of parent

generated health data as an ‘intervention’ in clinical care and the effect on parental engagement through

the systematic capture of parental photographs of children’s surgical site wounds. In addition, healthcare

interventions aimed at increasing engagement and empowerment in children undergoing surgery often

involved patient education (Ni et al., 2016). In line with this precedent, to set a baseline from which

engagement could be evidenced and to ensure the data was able to indicate surgical site infections,

healthcare consumers received training on how to take medical images as part of the intervention.

Traditionally pre-experimental studies are used to test hypotheses; however, they can be transformed

into a mixed method design and have been used to evaluate healthcare interventions (Martin,

McCormack, Fitzsimons, & Spirig, 2012). This approach accommodated the collection of a quantitative

pre-test–post-test data to indicate if carer generated health data affects parental engagement and an

explanation of the findings through qualitative interviews to determine how patient generated health

data affects patient engagement. Hence the second study of this research employed a mixed method

approach employing healthcare consumer education and a pre-post questionnaire with carer generated

data as the ‘intervention’ to determine the effect on parental engagement. Lastly, interviews with

participants were conducted to explore the theoretical models developed in Study 1 as convergence of

data sources improved the validity and reliability of findings (Edmondson & McManus, 2007). These

findings were then iterated to the Overarching Theoretical Framework and existing literature, and

emergent constructs used to develop theory with analytic generalisability (Eisenhardt, 1989).

Intervention Design

Images taken on mobile phone by patients have been aiding diagnosis for over 10 years (Armstrong,

2004). In 2012 images taken on cameras by research assistants were used to accurately predict infection

healing rates in a randomised controlled trial of skin sores in remote Australian communities (Bowen et

al., 2014). Therefore, in this research, images taken on mobile phones were used for the detection of

surgical site infections. In order to achieve the standardisation required for best practice wound

photography four elements were considered: 1) correct perspective aligned with the plane of wound, 2)

 

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even, standardised lighting, 3) the use of a scale aligned to the edge of the frame and 4) a neutral

background (Nayler, 2003). Taking Mobile Phone Photographs using a Standardised Methodology

(Appendix F) was developed to ensure that carer-taken photographs were simple to take, yet effective

in providing the visual information required to detect surgical site infections and provided an opportunity

to explore carer generated health data and its effect on parental engagement.

Pre-post Questionnaire Design

This thesis defines engagement as cognition, emotions and behaviours, in participation with clinicians

in clinical care and the patients’ involvement in their own healthcare journey with the peer network. As

such a questionnaire based on the Theoretical Framework and Study 1 engagement states was developed

and used in Study 2 (Appendix G). Suitable questions from existing scales were drawn together to

explore which constructs were relevant for the use of carer generated health data in clinical care for the

purpose for engagement. In addition, the cognition, emotions and behaviours demonstrated in Study 1

were incorporated into the questionnaire as an indicator of engagement, and thus used to demonstrate

changes.

Validity

According to Finlay (2006) the greater the rigour used to perform the research the more trustworthy the

results will be. To improve research rigor four types of validity can be addressed (Babbie, 2013). To

address rigor the research implemented the strategy shown in Table 3.2. Construct validity was applied

using the multiple perspectives of the patient, carer and clinician, a pre-and post-test design, and key

informants were interviewed about the results. Internal validity was improved by analysing engagement

patterns across the carer cohort. External validity was tested through existing engagement, services

marketing and psychological empowerment theory and reliability was improved through a study

protocol which detailed how the data was to be collected and analysed.

Table 3.2 Addressing validity in this research

Validity Type (Babbie, 2013) Tactic (Yin, 2003) Strategy used in this research

Construct Validity Use multiple sources of evidence Establish a chain of evidence Key informants review draft

Use of multiple sources of evidence Pre / post-test design Key informants interviewed about results

Internal Validity Pattern matching Do explanation-building Address rival explanations Use logic models

Pattern matching across studies Do explanation-building

External Validity Use theory Use of engagement, services marketing and psychological empowerment theory

Reliability Use a study protocol Intercoder reliability

Use of a study protocol Intercoder reliability was performed on coding

 

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Sampling Size and Inclusion Criteria

In line with maximum variation sampling, to address the real life, complex, multi-stakeholder networks

referenced in current co-creation literature and to differentiate this cohort from the patients used in Study

1, carers were used as the data collectors in Study 2. This addresses another gap in healthcare literature

as carers have not been the primary target of engagement interventions, although integral in data

collection (Boyce et al. 2011). Parents of children undergoing laparoscopic appendectomy surgery at

Lady Cilento Children’s Hospital were invited to participate in the study using an all-comers approach

consistent with other laparoscopic interventions (Thompson & Tranter, 2002). Parents were required to

be the primary carers for the child undergoing surgery, they needed to own a smart phone, have an

ability to use the camera function and have the data capacity to send the photographs to a secure email

account for review. This trial was interested in the qualitative description of engagement, so the number

of participants chosen was 30 (Johnson, et al., 2006; Liamputtong & Ezzy, 2009). This is also consistent

with the sample size for feasibility studies in healthcare research (Hertzog, 2008).

Data Collection Procedure

Time 1: Day of / Day after the child’s surgery

Participants were invited to attend a 30-minute training session to learn how to take medical photographs

the day after their child underwent laparoscopic appendectomy surgery similar to the process detailed

by Bowen et al. (2014). Participants were provided with an overview of the training session and were

asked to read and sign consent forms Appendix H and Appendix H. Care was taken to ensure the parents

and children knew that the training session could be stopped at any time, and if they experienced

discomfort they could withdraw from the study. The session included the following:

1. Researcher explains the Information Sheet, Consent and Assent Form and obtains consent

2. Participant completes Questionnaire 1

3. Researcher uses Training Time 1 to demonstrate using mobile phone to take images of SSI

4. Researcher describes and demonstrates lighting and positioning of the child for photography

5. Researcher describes and demonstrates emailing the photographs to a secure email account

6. Participant undertakes activities 2-4 under the supervision of the researcher

7. Researcher ensures the process was understood and answers participants’ questions

8. Participant is asked to repeat the process on days 2, 4, 6 and 10 after discharge

Quality of Images

All images were assessed for usability by a qualified medical photographer using a predefined quality

check (Bowen, et al., 2014) that has been modified for this research (Appendix F). Parents who took

more than two consecutive images deemed unable to be interpreted were contacted.

 

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Time 2: Approximately 2-3 weeks after their child’s surgery

The participant completed Questionnaire 2 (Appendix I) via the phone.

Time 3: Approximately 3-4 weeks after their child’s surgery

All participants were invited to take part in a semi-structured phone interview to discuss differences

between Questionnaire 1 and Questionnaire 2 by the researcher using Interview Schedule Time 3

(Appendix J).

Data Analysis Phase 1: Pre-post Questionnaire

Information from the questionnaires and observation was collated into an Excel spreadsheet (Appendix

K) and the data was manually explored for engagement trends and used in interviews (Henry, Dymnicki,

Mohatt, Allen, & Kelly, 2015). Categories of increased engagement were sought. Engagement was

considered to have increased when there was an increase in the number of cognition, emotions and

behaviours associated with the data within clinical care or in the carer’s involvement in their child’s

health. Importantly the most observed engagement methods were collated for a survey instrument to

inform in-depth interviews offering parents as key informants to discuss the results.

Data Analysis Phase 2: Interviews

In the second phase of analysis participants were interviewed about their levels of engagement and the

resulting service implications. This addressed rigor through construct validity (Babbie, 2013) and

triangulation (Liamputtong & Ezzy, 2009). Interviews were conducted using open and probing questions

(Liamputtong & Ezzy, 2005) as detailed in Interview Schedule Time 3. This technique was employed

to deepen the understanding of value and the relationship to engagement to establish use attributes,

thematic consequences and the overlapping experiential values associated with patient generated health

data. Saturation was achieved at 26 patients. The interviews were analysed for meaning (Kvale, 2008)

using a five step process: 1) gaining familiarity through reading all transcripts, 2) data reduction via

axial means end chain coding, 3) data reorganisation through laddering, 4) data interpretation via

analysis of the interview content, 5) a discussion of the key considerations related to the value domains

identified in Study 1 (Flick, 2013; Tolley, et al., 2016) to answer RQ 1-4.

Patient generated health data is not new, but the range of digital techniques to capture it means the

proliferation of the data and its impact in the service of health care is certainly going to increase (Shapiro,

2012). Services must grapple with the proactive patient and their effort to become a participant in the

healthcare co-creation process (Elg, et al., 2012). This two-study research agenda presented was used to

answer Research Questions 1-4. A qualitative approach was taken in Study 1 of this thesis to define

emerging constructs for its appropriation and value informed by perceptions gathered through interviews

 

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with patients, carers and doctors. Study 2 will qualitatively report on a mixed method process with the

aim of evidencing and refining a theoretical framework to understand the effect of PGHD on

engagement in credence services. As previously discussed, Critical Realism is the paradigm chosen to

underpin the knowledge production and results were discovered via a triangulation of perspectives using

theory-data-theory iteration that produces a ‘probably true’ finding as seen in Figure 3.2.

Figure 3.2 Interview analysis process RQ 1-3

The next chapter of this thesis describes the results gathered in Study 1, giving a clear account of how

the methodology was executed, the findings and how this was implemented into Study 2.

Discussion

Graphical Presentation of Findings

Intercoder Realibility Checks

Study 2 results confirm / disconfirm Q1,2,3

Thematic Analysis using 5 domains of Value (Q2) 

Intercoder Realibility Checks

Thematic Analysis using Engagement Outcomes (Q1) 

Open Coding 2 and content analysis guided by overarching framework (nVivo) 

Intercoder Realibility Checks

Open Coding 1 and content analysis guided by overarching framework 

Read Transcripts

 

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4.0 STUDY ONE RESULTS

4.1 Introduction

As discussed in Chapter 3 a qualitative approach was used, with vignette based semi-structured

interviews in Study 1 to explore the two research questions in this nascent research area. To understand

the holistic ‘real-world’ context of patient generated health data, this research extracted and triangulated

data from three participant types: patients, carers and medical practitioners. A comprehensive schema

was developed to address How is patient generated data used and how does it influence patient

engagement? (RQ1)?

Secondly, value-based care is now the predominant way to understand the impacts of the healthcare

service experience. Further, knowing the underlying value of patient generated health data for the patient

is critical to that process and hence this thesis asked What is the value of patient generated health data

for a patient and how does it reflect the five domains of functional, transactional, social, and emotional

and self-determination value (RQ2)?

This chapter begins with this introduction (4.1), an overview of the sample profile and a description of

the individual respondent characteristics (4.2). Next, the research questions are answered and the results

of Study 1 are discussed (4.3-4.7).

4.2 Overview of Sample Profile

A purposive sample of 20 healthcare consumers and 10 doctors was sought with 16 patients, 7 carers

and 11 doctors achieving saturation. Saturation was achieved with unequal numbers of healthcare

consumers and providers as the concepts yielded were experienced across all participant groups. To be

included participants were required to be familiar with a health condition that could be captured by

patient generated health data and all respondents had either taken images of themselves to document a

medical condition, or had been presented with these images in clinical care. In line with maximum

variation sampling (Sandelowski, 1995) patients and carers exhibited varying levels of data generation

categorised into Once only, Infrequently, Semi-Regularly and Constantly. For clinicians, a variety of

medical sub-specialities were sought. These were General Practice, Emergency Healthcare, Surgical

Care and Trainee. This offered an opportunity to explore the variances in attitudes, perceptions and

beliefs about the patient and clinician generated health data for a cohort who would understand the

implications and complexity of its use. A summary of the sample is provided in Table 4.1.

 

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Nineteen male and 16 females participated in 34 interviews that totally 19 hours and 45 minutes of audio

records, ranging from 20:30 mins to 1:16:34 mins with the average time being 34:54 mins. Participants

were aged from 22-69 years. Patients and carers were from a diverse range of professions, with doctors

from the four pre-defined categories. To ensure anonymity, identification codes were generated to

including participant type, participant number, age, sex and user type or profession.

Table 4.1 Study 1 Individual Respondent Characteristics

Patients Participant ID Sex Age Occupation User Type 1 Pat01_M41_O M 41 Youth worker Once 2 Pat02_M48_R M 48 Business Consultant Regularly 3 Pat03_M33_I M 33 Unemployed Infrequently 4 Pat04_F38_I F 38 Health Manager Infrequently 5 Pat05_F50_C F 50 Retired Constantly 6 Pat06_F69_R F 69 Cultural Consultant Regularly 7 Pat07_M56_R M 56 Teacher Regularly 8 Pat08_MF54_R F 54 Research Fellow Regularly 9 Pat09_MF45_I F 45 Art Director Infrequently

10 Pat10_M49_I M 39 Unemployed Infrequently 11 Pat11_M55_C M 55 Retired Constantly 12 Pat12_F24_O F 24 Hairdresser Once 13 Pat13_F26_R F 26 Student Regularly 14 Pat14_F62_R F 62 Nurse Regularly 15 Pat15_F30_I F 30 Lecturer Infrequently 16 Pat16_M22_I M 22 Student Infrequently

Doctors Participant Age Occupation 1 Doc01_F31_SurgicalCare F 31 Surgical Care - 2 Doc02_F28_Trainee F 28 Trainee - 3 Doc03_M38_PrimaryCare M 38 Primary Care - 4 Doc04_M60_PrimaryCare M 60 Primary Care - 5 Doc05_45_EmergencyCare F 45 Emergency Care - 6 Doc06_M46_EmergencyCare M 46 Emergency Care - 7 Doc07_M45_EmergencyCare M 45 Emergency Care - 8 Doc08_M37_SurgicalCare M 32 Surgical Care - 9 Doc09_M52_SurgicalCare M 52 Surgical Care -

10 Doc10_M29_Trainee M 29 Trainee - 11 Doc11_M43_PrimaryCare M 43 Primary Care -

Carers Participant Age Occupation 1 Car01_F56_R F 56 Retired Regularly 2 Car02_F28_I F 28 Administration Infrequently 3 Car03_M34_R M 34 Student Regularly 4 Car04_M45_O M 45 Comp. Programmer Once 5 Car05_M56_R M 56 Retired Regularly 6 Car06_M40_I M 40 Carpenter Infrequently 7 Car07_F30_C F 30 High School Teacher Constantly

As this research area is nascent, vignette-based semi-structured interviews were used with patients,

carers and doctors to develop an imperfect probabilistic reality about patient, carer and healthcare

practitioner generated data. Twelve participants were invited to attend an interview located in a private

room in Queensland University of Technology while the remaining 21 were interviewed by telephone.

 

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As visual proximity was not possible in most interviews observations of body language was not

conducted. The interview length was not significantly affected by either modality. It is was not possible

to interview all participants in person hence it is a limitation of the research. A grounded approach

allowing the codes to emerge from the data was used. From the data, 305 codes were identified and

categorised into 24 use attributes, 10 consequential themes. Observations were iterated between the data

and the themes of physiological, cognitive, behavioural and emotional outcomes and underwent inter-

coder reliability checks which increased from 70% to 100% after the data was coded a second time.

4.3 Usefulness of Patient Generated Health Data

Except for one General Practitioner (GP), all other patient, carers and doctors agreed that patient-taken

medical photographs were useful, with the most typical response relating to the data being of evidentiary

value. For example, Pat13_F26_R commented, “My perception is I think these photographs are useful.

The reason for these photographs are useful – because I think they can help the patient to keep the first-

hand information or the immediate information of what's happening with the patient's situation.” Carers

also expressed similar sentiments with Car01_F56_R commented they are useful for overcoming an

inability to describe a condition “So it’s such a visual assistance—that I think it’s amazing,” with

Doc08_M37_SurgicalCare supportive of the data suggesting, “yes photographs like this can be useful,

highly useful.”

Many comments also related to the use of the data in situ with the doctor, for example Pat02_M48_R

commented, “Yes… I think, ultimately, when she does see the doctor, I guess from the doctor’s

perspective it’s probably a lot more helpful to actually see an image, than to have a verbal description

of the actual symptom.” The use of the data in conjunction with the medical professional was an

admission the data was partial evidence with Pat08_MF54_R commenting, “I think the photographs

would be useful in obviously combined with the consultation because skin rashes can be so many, and

varied, and look alike, and all that sort of thing, so obviously, a lot more information need to be added

before sort of any kind of diagnosis could be made.” In addition to use in clinical care Pat10_M49_I

noted use in his peer network saying, “[I] definitely think it's useful. If she has a family history of some

reactions and she had seafood and she gets this big reaction, then yeah, definitely. I think it’s useful to

take that selfie along to the doctor especially since these things can come and go. And sometimes they’re

not there when you’re at the doctor so it comes handy to have a record of it.” Indeed Pat04_F38_I had

a peer network beyond her family, with the data used in an online health community, “I blog to people

with lupus and one of the things we do online is actually share photos and go “Hi, has anyone got

something like this before?” So it seems to be an extension of what we normally medically do.”

 

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Despite near-universal acceptance,Doc04_M60_PrimaryCare was not supportive of this type of

information. This stemmed from perceptions that the data was “generally, not useful, because the quality

of selfies are usually fairly poor, and they don't give enough information, enough resolution, enough

colour, colour define rashes to make a diagnosis. They do give me some information, but usually

insufficient, but it's something that gives some possibilities.” The quality of the data was indeed

considered a caveat to the usefulness of the data, with carers and patients agreeing “they're valuable as

long as the definition is enough, because I think that at some point if it's a bad photo you're not going

to get much out of it. So I think they're valuable as long as there is enough definition to actually provide

information” (Car02_F28_I), and Pat02_M48_R saying, “I know the different allergies and rashes take

on different shapes and positioning, and the way which they actually look, so hopefully it was a good

photo, good light.”

4.4 Patient Generated Health Data Use Attributes (A)

Research Question 1 examines use of patient generated health data inside and outside clinical care. This

thesis suggests 24 use attributes and 10 consequential themes and of patient generated health data use

in a comprehensive scheme. Themes include Improved Health Outcomes composed of the categories

diagnosis and management and medical research, data provides an opportunity for increased Self-

Perception composed of evidence, sense-making, memory-making and responsibility and a Preventative

Mind-set which includes increased awareness of a health condition and recognition of healthy

behaviours. Data aids Emotional Regulation providing reassurance and helping consumers to manage

anxiety, Emotional Buoyancy through entertainment and altruism, and Empowerment via self-advocacy

and health system control. PGHD encourages Self-Management through self-monitoring, self-education

and self-diagnosis, and Partnership with Providers via communication, trust and co-creation. Lastly it

was utilised for Social Support by data sharing and for information seeking, and helped patients with

Service Optimisation which meant better resource management and patient deviance. Hence Tables

4.2a-4.2j show a summary of engagement outcomes with definitions and identifying codes. These results

clearly showing PGHD use attributes go beyond only physiological engagement outcomes suggested by

health literature to include the cognitive, emotional and behavioural outcomes.

 

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Table 4.2a A summary of engagement outcomes with definition and identifying codes

Theme: Improved Health Outcomes (Physiological)

In conjunction with existing clinical care, PGHD is used for the ongoing-treatment and medical research for current patients

or to improve practices, treatments and ultimately health outcomes of future patients.

Diagnosis and

management

“I think the photographs would be useful in obviously combined with the

consultation because skin rashes can be so many, and varied, and look alike, and

all that sort of thing, so obviously a lot more information need to be added before

sort of any kind of diagnosis could be made.” Pat08_MF54_R

Medical

research

“I also do think that there is a certainly much bigger potential in terms of research

and you know, into ongoing treatment or into the monitoring all sorts of illnesses,

because sometimes it's difficult to try, for a doctor to try and describe it or to draw

it, whereas if you've got photographs and the more photographs that are collected,

more photographic data, would maintain patients get anonymity, then there is a

greater body of data for research.” Car05_M56_R

Diagnosis and Management

Data had multiple, overlapping uses including diagnosis and management and medical research which

have previously been identified when using healthcare practitioner generated data (Burns & Belton,

2013). These uses can be grouped into the theme of Improved Health Outcomes and are an example of

the physiological outcomes of engagement. Improved diagnosis and management of transient

conditions, chronic conditions, slow healing and slow progressing conditions occurred with PGHD. This

was enabled through the recording of changes, treatment and progress over time.

“If you can take photos over time, of visual things like rashes and growths and whatever, you

can see whether they’re getting worse or better. Uhm because it’s easy to forget. You look in the mirror

and you see the same thing every day, and yet you don’t notice it’s gotten bigger or it’s gotten smaller,

it’s changed a little bit … it’s easy to miss subtle changes over time.” Pat05_F50_C

The perspective of healthcare providers were mixed with the data considered redundant information,

partial information and key information that helped to reduce guesswork.

“They do give me some information, but usually insufficient [for diagnosis], but it's something

that gives some possibilities.” Doc04_M60_PrimaryCare

 

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“So, the main ways, as I say it’s additional information, well not even additional information,

just key information, and so- particular, something we don’t have at the time, it just eliminates a

significant amount of guesswork and assumptions that, you know, we don't get the situation where the

patient is trying to describe something and in their mind.” Doc06_M46_EmergencyCare

A specific area of both opportunity and concern was remote diagnosis. Patient and carers agreed that

remote diagnosis was possible with the data, concordant with literature indicating it overcame barriers

of distance (Kumar, et al., 2016) improving their quality of life by saving them time and money (Frühauf,

et al., 2012).

“I can see a time – I mean we already have telehealth to the point where, you know, doctors

consult with each other thousands of kilometres away uh through telehealth conferences … travel is

expensive, it’s exhausting, uhm and yeah, if we can, if we can grab a few photos through to our doctor

and have a chat with them on Skype and they can email us back orders for our blood tests and

medication, it would make a huge difference.” Pat05_F50

While this offered the consumers a patient-centred approach, healthcare scholars recognise that

healthcare still sits within a provider-centric service (Sanger, et al., 2016) and doctors have legitimate

concerns over the medico-legal ramifications of remote diagnosis and service reimbursement. One GP

stated flatly, “some patients will expect Doctors to look at them, by email, and so I refuse to accept

emails from patients” (Doc04_M60_PrimaryCare), and there are “medico-legal issues of using a

photograph the patient took to make a diagnosis sometimes without seeing the patient. That’s one of the

big barriers.” (Doc09_M52_SurgicalCare)

Medical Research

Secondly, patient generated health data can be used for research purposes, with the majority of

discussion about healthcare provider-led projects (Howie, Hirsch, Locklear, & Abernethy, 2014).

However patients are now mobilising online, establishing research agendas (Chung, et al., 2016) and in

clinical research the data can be used to “understand mechanisms of action of therapeutic strategies, to

understanding and predicting treatment-related toxicity, to designing interventions to improve adherence

and clinical outcomes” (Wood, Bennett, & Basch, 2015, p. 1018). Patients were comfortable sharing

PGHD with healthcare practitioners, providing adequate consent is obtained (Creighton, Alderson,

Brown, & Minto, 2002). The caveat to this was that patient age, sensitivity of the condition, sensitivity

of the body part and anonymity were all factors in the consent process.

 

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“I also do think that there is a certainly much bigger potential in terms of research and you

know, into ongoing treatment or into the monitoring all sorts of illnesses, because sometimes it's difficult

to try, for a doctor to try and describe it or to draw it, whereas if you've got photographs and the more

photographs that are collected, more photographic data, would maintain patients get anonymity, then

there is a greater body of data for research.” Car05_M56_R

While patients and carers wholeheartedly supported data use, one clinician refused to see the data at all.

This confirmed the findings by Tan et al. (2014) and Nundy et al.(2014) that a small percentage of

healthcare practitioners will not be interested in the data and may miss the opportunity to achieve

physiological health outcomes. Further, patients are demonstrating proactive tendencies, sharing data

with clinicians and their peer networks (McColl-Kennedy, et al., 2012).

Patients are seeking partnership and demonstrate this by using data as knowledge to educate clinicians.

Data use is, however, tempered with medico-legal considerations for the provider and privacy issues for

the patient. With appropriate consent patients will altruistically provide anonymous data for research to

‘benefit mankind’. For patients in remote areas, or carers who find it difficult to get to healthcare

providers, a remote service saves the patient time and money and is commensurate with patient-centred

care. Additionally, several participants noted in interviews that providers could actually train patients

on data collection to ensure data adequacy, an example of healthcare co-creation.

“If the patient has a dermatological condition, maybe they've gotten a lot of moles and

sometimes some of them look kind of scary, I think we should be directing our patients to buy the best

kind of technology they can to record these photographs. Give them some pointers on how they should

be taking these photographs so that they're going to be of most use to us taking care of them.”

Doc11_M43_PrimaryCare

While the physiological health outcomes are integral in the exploration of patient generated health data

this thesis focuses on the cognitive, emotional and behavioural outcomes. When evidencing the

physiological outcomes of patient engagement patients showed initiative, bringing the data into clinical

consultations for Improved Health Outcomes, however the cognitive implications of patient generated

health data and its use for engagement were also present. Importantly patients used data to better

understand their own situation in the theme of Self-perception composed of evidence, sense-making,

memory-making and increased responsibility.

 

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Table 4.2b A summary of engagement outcomes with definition and identifying codes

Theme: Self-Perception (Cognitive)

PGHD provides evidence of a healthcare consumer’s clinical condition, especially in circumstances where patient

observation is considered unreliable or inaccurate by providers. For consumers it aids sense-making of a healthcare journey,

increases a sense of personal responsibility for healthcare outcomes and serves as a tool to create memories.

Evidence

“it’s a record of time more than anything else…all that stuff’s visual journal, what’s

been going on, and you can always relate that to later on as well, you know,

especially in terms of – I that rash in different areas or in – it came back in a couple

of years’ time or if it was a food allergy or whatever, then I can relate it back to

where it was taken, how bad it was and stuff like that.” Pat01_M41_O

Sense-making “so the breast cancer, the motivation was really sort of like this weird thing that I’m

going through …had to kind of remember… what I looked like before the surgery,

how do I come to terms with the fact that it’s really happening to me, it feels like

crazy idea that happens to somebody else and not me… I think it’s sort of a way of

coming to terms with what is happening and way and understanding. It’s like a

concrete object that reflects what’s happening.” Pat08_MF54_R

Memory-

making

I’m kind of thinking about doing something kind of arty with them in some way,

making a piece of artwork about them. And it will sort of be like something that I’ll

go back to and it will bring back memories of the process and I know I’ll be able to

go “oh, wow, remember when I went through that? So, yes, I think that there's

definitely value outside of the clinical consultation.” Pat08_MF54_R

Responsibility “Oh, yeah. Yeah. I mean, with a thing like this. Now, when you’re doing your own

dressing changes, and things like that, you feel a much, much greater responsibility

in terms of your own care.” Pat02_M48_R

Evidence

One of the most discussed themes in all interviews was the notion the data was evidence. It constituted

a patient’s personal record and evidence of the medical experience. Data documented and illustrated the

patients’ journey and could be used for forensic evidence in legal cases involving injury. This was

considered an end use, irrespective of the data’s function in clinical care with Pat09_MF45_I

commenting, “if I had an inkling of what was going to take place, I would have loved to take a

photograph of my own leg when I was in hospital… and kept it for my own records, even if they [doctors]

are not interested in having it.”

Importantly the data emphasised the concerns of patients and carers. Doctors also recognised that

unsolicited data documented something of importance to healthcare consumers, even if this was not

important to clinical care. Car02_F28_I commented, “for me, it's purely – I see it as a – taking a picture

 

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of something that is causing me concern” with Doc03_M38_PrimaryCare echoing the sentiment “it’s

[data] the patient’s concerns, it’s the patient – it something that they – that the patient wants to know

about. Somehow important, let’s say, to be discussed.”

The idea that the data acted as a record for the patient was compelling involving the notion that this

record was better than relying on memory and it could then be used to prompt memories about the

patient journey, “it’s a record of time more than anything else…all that stuff’s visual journal, what’s

been going on, and you can always relate that to later on as well, you know, especially in terms of – I

that rash in different areas or in – it came back in a couple of years’ time or if it was a food allergy or

whatever, then I can relate it back to where it was taken, how bad it was and stuff like that”

(Pat01_M41_O). Data also served as a record, documenting pre and post medical intervention, with it

evidencing of medical care and an ability help patients makes sense of healthcare processes:

“The day before surgery, one of her concerns was that notion of violation, that her body was

going to be changed forever, going through the process of surgery, so it actually sort of almost came

from a point of vanity, which said 'Can you just take a photo of my breasts so I've got a record of what

they were like before they potentially become deformed through the surgery’.” Car05_M56_R

Throughout the interviews patients and carers used their data as a source of evidence to educate their

peer network and their own healthcare providers. Doctors acknowledged patient images could be used

to educate their colleagues or be used for training purposes. Pat02_M48_R utilised photographs to share

his experience with wound dressings and the images helped educate nurses on his decision making, “it’s

about the communication… you know, I’ve tried these three different types of dressings in the past

couple of weeks...then I can go back and say [to the nurses], “Well, this one was better than this one.”

So, next time I order from the company, I’ll – the supplier, I’ll order these ones. While this type of

communication is not common, it can be easily used with the patient’s peer network, or be created by

carers on behalf of the patient to educate the patient:

“With the insect bite on my neck, part of that motivation was the fact that it was on the back of

my neck and I couldn’t actually see it myself… so I get my partner do the photos.” Pat08_MF54_R

Additionally, it was highlighted that patient photographs could educate future patients with one patient

identifying she was on a quarter knee replacement group on Facebook where people showed

photographs of scars and how the healing progressed with different post-operative treatments. This

sentiment was echoed by Pat09_F45_1, “I was shown a photograph and said, ‘Look, don't worry. All

you got to do now is get better, and be calm, be positive, and don't change your whole life just because

 

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this has happened to you. Just carry on, just go into the healing process, and put out the drama, the

depression and all that and this is what the outcome will be’ …doctors themselves don't realise the

importance of that.”

Sense-making

Recording the health care journey is a preliminary step towards healthcare sense-making and a reaction

to the stressors of disease with the aim to generate a sense of coherence. Aaron Antonovsky (1987)

defined health sense-making as an act that “expresses the extent to which one has a pervasive, enduring

though dynamic, feeling of confidence that one's internal and external environments are predictable and

that there is a high probability that things will work out as well as can reasonably be expected”

(Antonovsky, 2002, p. 3). In short, generating data, and in particular taking photographs, is an expression

of a patient’s desire for control in the face of a stressful illness.

Sense-making was expressed as coming to terms with the abstract concept of a illness by Pat08_MF54_R

“so the breast cancer, the motivation was really sort of like this weird thing that I’m going through had

kind of remember what I looked like before the surgery, how do I come to terms with the fact that it’s

really happening to me, it feels like crazy idea that happens to somebody else and not me… I think it’s

sort of a way of coming to terms with what is happening and way and understanding. It’s like a concrete

object that reflects what’s happening.”

Notably, the data was an objective form of truth that was considered a separate point of view to the

doctor or the patient, “I think it's [an image is] multifaceted. It's not just like a person's opinion. It's

more like a truth of the fact….and also I think the third point [of view] is valuable because it's more...

it's more neutral. It's a neutral data. It's not any biased data” (Pat13_F26_R). This was mentioned by

Doc05_45_EmergencyCare, “sometimes patients don’t know when to believe certain things. But it’s

much harder to argue about a visual thing that’s clearly recorded. That you’re both seeing the true

representation of the fact, as opposed to people’s opinions.” This notion of the data as objective

evidence has not been detailed in any patient generated health data literature to date, and has been

superficially discussed in association with the medical record, suggesting once clinicians document in

the medical record they become a form of ‘objective truth’ that asserts clinician power and can be used

to coerce (Nyttingnes, Ruud, & Rugkåsa, 2016).

Memory-making

Data was used to record memories for patients, carers and the wider peer network. Creating ‘artistic

works’ was a process considered by Pat08_MF54_R who commented that she plans to document her

cancer survivorship through artistic expression for intrinsically motivated self-reflection, “I’m kind of

 

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thinking about doing something kind of arty with them in some way, making a piece of artwork about

them. And it will sort of be like something that I’ll go back to and it will bring back memories of the

process and I know I’ll be able to go ‘oh, wow, remember when I went through that?’ So, yes, I think

that there's definitely value outside of the clinical consultation.” Due to the protracted process of cancer

treatment capturing the process allowed other to share the journey which is “recognised by health

professionals as a phenomena that affects the whole family, not just the person who has the illness”

(Kristjanson & Ashcroft, 1994, p. 1). While this was the only example of this form of data use, literature

suggests that it is commensurate with the documentation of survivorship (Murthy & Wood, 2015) with

PGHD produced emotional engagement between patients and their peers (Chou, Hunt, Folkers, &

Augustson, 2011) and is an act of memory-making.

Responsibility

Responsibility was a category that emerged as important for both patients and carers when discussing

patient generated health data. When asked if the PGHD would affect the relationship between the patient

and the doctor Car02_F28_I noted, “When they're children, I don't think at all. When they're an adult it

would be very different. But like again you are a carer so you're taking on the responsibility.” Taking

on extra responsibility was a self-perceived consequence of using the data and accentuated the potential

for co-creation. When asked, “Do you – so, given that you’ve taken photos like this, do you think these

kind of photographs affected the involvement that you had in your own healthcare process?”

Pat02_M48_R responded emphatically:

“Oh, yeah. Yeah. I mean, with a thing like this. Now, when you’re doing your own dressing

changes, and things like that, you feel a much, much greater responsibility in terms of your own care.”

Increasing a patient’s responsibility was suspected to improve health outcomes with Pat04_F38_I who

was a health services managing suggesting, “when I see these things on the internet and social media

and other things, I think it’s a good uh it’s a good thing happening, like people are – it’s – one thing is

it gives some part of the responsibility for the patient himself, like they are the one who should take the

photograph uh and present it to the doctor, one thing. And uh it’s – people will get promoted to care

more about their health with this.” Yet doctors were wary, “the disadvantage is that you may actually

– I guess, the patient is now responsible for looking after the moles themselves, they may slightly be

falsely assured in some way.” (Doc05_45_EmergencyCare)

Data as evidence of the patient experience, a prompt for sense-making, and reinforcement of

responsibility are grouped under the theme Self-perception and are examples of the cognitive outcomes

of patient generated health data. The second theme discovered in the data as a cognitive outcome of

 

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engagement is a Preventative Mind-set which is composed of increased awareness of a health condition

and a reminder of health-related behaviours, discussed in the next section.

Table 4.2c A summary of engagement outcomes with definition and identifying codes

Theme: Preventative Mind-set (Cognitive)

The collection and use of PGHD increases health consumers’ awareness of their own condition and serves as a reminder

about behaviours which will impact on their health.

Increased

awareness of

health

condition

“They [wound photographs] just reminds me that I've got to watch what I'm doing.

As the doctor explained to me when I was leaving the hospital, he says because I've

got diabetic feet which is neuropathy in the feet, I’ve gotta wear shoes all the time.”

Pat14_F62_R

Reminder of

health-related

behaviours

“Yeah, it [photographs of my face] reminded me that’s I should not go too hard

sometimes. I should relax to release my stress otherwise, I will not have more

pimples on my face. Sometimes it’s a reminder to remind you to do more

exercise.”Pat15_F30_I

Increased awareness of a health condition

When asked if PGHD alters their involvement in their own healthcare patients commented that it

provided them with an increase in awareness of the condition and ways to help stay healthy.

Pat14_F62_R explained, “they [wound photographs] just reminds me that I've got to watch what I'm

doing. As the doctor explained to me when I was leaving the hospital, he says because I've got diabetic

feet which is neuropathy in the feet, I’ve gotta wear shoes all the time.” Similarly, Pat01_M41_O

suggested the act of photography increased awareness of the condition and acted as a prompt for

intervention. When asked how the photographs affected his involvement in his own healthcare the

response was:

“It’s kind of like a, I guess like a signal to say ‘Okay, I’ve taken the photo, I’ve taken more

notice of it and what’s happened when I have had that in the past. So if I did have that in the future, if

that happens the future, I’m taking a photo of it, it’s like a physical thing to say ‘Okay, that’s back and

I’m taking more notice of it.’ So it’s like a trigger, you know, to yeah, have more awareness and that’s

what is lacking, I guess, more than anything else. Awareness of yourself and of what your body is doing.”

Pat05_F50_C

This was reiterated by Pat14_F62_R, “[the photos will] make them [patients] more aware that there's

probably something there but not to scare them but to make them aware that, you know, body does

change itself,” and the results show that data can be good to watch for new conditions that develop.

Indeed, awareness could also be increased within the patient peer network as described by Pat16_M22_I,

 

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“I definitely think they’ll maybe track things more, like you keep an eye on things over time. So like, I

get bruises on my leg a lot and I tend to take pictures of each time I get them and it makes me think more

about not getting those bruises.” While there was no evidence that data increased awareness between

carers and patients or patient and clinicians, this is plausible and will be explored in Study 2.

Reminder of health-related behaviours

Similarly, the results suggest that the data serves as a prompt for reminding participants of behaviours

they were already aware of that related an improvement in a health condition. This was most clearly

expressed by one patient who noted data reminded her to think about her own behaviour and its

relationship to the illness, aiding the condition through healthy activities.

“Yeah, it [photographs of my face] reminded me that’s I should not go too hard sometimes. I

should relax to release my stress otherwise, I will not have more pimples on my face. Sometimes it’s a

reminder to remind you to do more exercise.” Pat15_F30_I

While it is clear that data can help awareness, and serve as a reminder for healthy behaviours, recent

literature suggests that “although wearable devices have the potential to facilitate health behaviour

change, this change might not be driven by these devices alone” (Patel, Asch, & Volpp, 2015, p. 460).

This is concordant with the thesis’ findings that no behaviour change occurred but the antecedents of

awareness and an increased motivation to enact health related behaviours was present.

Composed of both Self-Perception and a Preventative Mind-set the capture and use of data affects the

cognitive outcomes of engagement. It does this by providing evidence, sense-making, raising the notion

of increased responsibility for patient and carers, increasing awareness of a health condition and serves

as a reminder about health-related behaviours. With these now documented the next section of this thesis

addresses the under-researched emotional outcomes of patient generated health data starting with

Emotional Regulation where patients use data for reassurance and to manage anxiety.

 

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Table 4.2d A summary of engagement outcomes with definition and identifying codes

Theme: Emotional Regulation (Emotional)

The collection and use of PGHD increases health consumers reassurance that healing is occurring. Conversely is can

instigate or increase anxiety when diagnosis is inconclusive, contradicted or when patients are highly anxious about their

healthcare journey.

Reassurance “It [sharing data] was pretty positive, actually. I got some comments ‘yeah mines

worse than that’ on why I was doing that, but I got some comments saying, ‘yeah,

mine started out like that’, and giving a particular kind of reason – You know, your

fingers just shouldn’t move by themselves without you wanting to grab a glass or

grab a pen or something, and it was a pretty weird. I guess I got some reassurance

from people online.” Pat10_M49_I

Anxiety “if he or she is going to share the photo with the GP, it is better not to share it before

with the family or any, or a social media… as a GP, I prefer to be the first one to be

consulted for that, you know, medical condition before, because usually people

before coming to the GP may get non-informative feedback from others, from

friends, from family members. So, these kinds of feedback may increase their, you

know, anxiety.” Pat14_F62_R

Reassurance

The data’s ability to provide patient and carer reassurance was linked to helping consumers cope with

emotions. This phenomenon was recognised by all three participant groups. When asked why the images

were valuable Pat10_M49_I joked,

“I think it was kind of a reassurance for myself that I wasn’t going mad” and “Online? It was

pretty positive, actually. I got some comments ‘yeah mines worse than that’ on why I was doing that,

but I got some comments saying, ’yeah, mine started out like that’, and giving a particular kind of reason

– You know, your fingers just shouldn’t move by themselves without you wanting to grab a glass or grab

a pen or something, and it was a pretty weird. I guess I got some reassurance from people online.”

Carers talked about reassurance coming from sharing information with others, sense-making and self-

advocacy, as well as its effect on the people they cared for:

“It gave us [two parents] a bit of relief that it was just ‘oh it's okay, there's other kids getting

it’…not so much, because there was also stress but there was also a bit of a flue-y bug going around as

well, so we kind of tossed it up between the two…. So it was just somewhat making us feel better that

"both our kids have runny noses, a rash, and stress, it's nothing to worry about.” Car02_F28_I

 

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“This is for my own perseverance and I did that basically around the time I started caring for

Dad, and you start noticing all these other things when you start caring for someone, so yes, so it also

worked well for my own peace of mind and for the benefit for me and my dad in that sense, it's

reassurance, yes they will believe that yes this has occurred, and this is ongoing or something like that,

you know we need the assistance, please give it to us, this type of thing.” Car06_M40_I

From the perspective of the provider, the reassurance was two-fold: firstly, that the patient was reassured

by the clinician by the act of sharing patient generated health data and secondly that the clinician could

reassure the patient with healthcare practitioner generated data:

“in general, the people who do that [collect data], sort of…that sort of person who takes that

level of interest in their own condition is a certain, tends to be a certain, you know, one end of the

spectrum of patients. So they tend to be the ones who, you know, are very detail-focused and also, you

know, anxious and that sort of thing.” Doc06_M46_EmergencyCare

“If you take a photograph and show someone else [another clinician], they [patients] are all,

‘Oh, she does care’.” Doc05_45_EmergencyCare

Anxiety

In opposition to reassurance, anxiety was included under the theme of Emotional Regulation with

literature suggesting patients accessing more information through electronic health records and creating

data might cause them undue stress. This study found similar results with patients, carers and doctors

indicating the potential for data to cause anxiety. Despite Doc03_M38_PrimaryCare suggesting, “I think

it is her right to share it [data] with anybody” he explained the association between sharing images and

anxiety, “if he or she is going to share the photo with the GP, it is better not to share it before with the

family or any, or a social media… as a GP, I prefer to be the first one to be consulted for that, you know,

medical condition before, because usually people before coming to the GP may get non-informative

feedback from others, from friends, from family members. So, these kinds of feedback may increase their,

you know, anxiety.” Pat14_F62_R expressed a similar sentiment, commenting a doctor’s remarks about

a medical photograph of her foot caused her to be ‘scared’:

“I took of one [photo of my foot] and there was a white spot there and one of the doctors popped

up and said, ‘Oh, that's the bone coming through, the osteo [myelitis] in the bone, the end of the bone.’

And that sort of scared me a little because I had a photo of it. So I keep looking at it, the white spot…so,

that scared me in some ways, to see the photo after the doctor told me.”

 

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This research demonstrates that this occurs online, in person and with either professionals or non-

professionals. While data may be “a sign of diligence in a patient, [data collection] might be a sign of

hypochondriacs, people tracking all these little things that really don't need to be monitored and actually

cause them stress”. One emergency department doctor was, more pragmatic, “yeah, even that [anxiety]

tends to be a useful thing, because that anxiety exists anyway, and it needs to get addressed at some

point in the whole therapeutic relationship.” So, while the data may cause anxiety, it can also be a cue

to address unexpressed anxiety instigating reassurance. This research suggests emotional labour is part

of the doctors job (Hochschild, 2012) with Doc05_45_EmergencyCare surmising “the job is to treat

them and their event, which includes the emotional reaction to it. So, if you can navigate by way of what

makes them feel better, I’m all for it,” and patient generated health data is a way for patients to be

reassured, offering an opportunity to co-create healthcare experiences with healthcare providers.

Despite being characterised as ‘grotesque’ and ‘embarrassing’ patients demonstrated a range of coping

mechanisms that improved the experience of illness facilitated by the data for Emotional Regulation.

An additional facet of emotional outcomes of engagement relates to a new theme called Emotional

Buoyancy composed of entertainment and altruism where patients use data to make light of their

healthcare situation.

Table 4.2e A summary of engagement outcomes with definition and identifying codes

Theme: Emotional Buoyancy (Emotional)

In order to make light of their situation, healthcare consumers used the graphic nature of PGHD to shock members of their

peer network and altruistically shared data for research purposes to improve the lives of other patients and the community.

Entertainment “I mean, the other day, I was going to take a photo of my butt because I had a big

bruise there, but that wasn’t for any, it wasn’t for any kind of diagnosis or anything.

That was just posting on social media because, you know, getting a response from

people.” Pat01_M41_O

Altruism “Obviously, for the care of the patient foremost, but I mean I don't, I'm not opposed

to them [photographs] being used for training purposes, or research purposes and

that sort of thing to the benefit of mankind.” Car04_M45_1

Entertainment

PGHD was used for entertainment within the peer network with Pat01_M41_O suggesting he wanted

to share an image of a bruise with social media followers, “I mean, the other day, I was going to take a

photo of my butt because I had a big bruise there, but that wasn’t for any, it wasn’t for any kind of

diagnosis or anything. That was just posting on social media because, you know, getting a response

from people,” adding that he looked online for other images, “even if the value is minimal, you get

entertainment. For me it’s –I don’t mind seeing other people’s injuries and stuff like that.” This was

 

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reiterated by Car04_M45_O who when asked, “when you took the photos of your own finger, do you

look back on them now, or do you, what was the motivation for taking them at the time?” commented,

“it was just to share with my sisters… I was just joking you know. It’s family, you joke”. While this form

of data may not have immediate use in improved health outcomes, the data serves a specific purpose

offering patients an emotional connection with a social network.

Altruism

In addition to sharing medical information with clinicians, patients were motivated by a feeling of

altruism, giving information to benefit the wider community. This is supported by the findings of

Spencer et al. (2016) who reported 98% of participants interviewed about sharing anonymous health

information for research purposes “considered that the altruistic benefits of sharing health care data

outweighed the risks” (p.1). Put aptly by Car04_M45_1, “obviously, for the care of the patient foremost,

but I mean I don't, I'm not opposed to them [photographs] being used for training purposes, or research

purposes and that sort of thing to the benefit of mankind. So I'm not opposed to that either, obviously,

giving consent… for now Ethan's young, that's my decision, but obviously when he gets older, that

becomes his decision, it's his body, it's his privacy.”

Emotional Buoyancy offered consumers an avenue to share data with others as a form of entertainment

within the peer network and to improve the lives of others through altruistic acts. Patients also sought

to increase their emotional outlook through the self-advocacy and control over the health system through

Empowerment, the last category of the emotional outcomes of engagement.

Table 4.2f A summary of engagement outcomes with definition and identifying codes

Theme: Empowerment (Emotional)

Due to its evidentiary nature PGHD increases a healthcare consumers ability to self-advocate providing a mechanism by

which they can negotiate with providers regarding health services, empowering patients in a system often described as

disempowering and dehumanising.

Self-advocacy “I think it [the data] enabled the – first of all, it enabled me to go right, you know,

‘here it is!’ So the doctors can see that I’m not making this thing up.” Pat10_M49_I

Health system

Control

“it all turned into taking control of it yourself, probably because of the fact that I

went into hospital a year prior to the accident with pneumonia and I was getting

tossed about from specialist to GP to this, that and the other and no one seemed to

be sort of taking initiative of the entire situation.” Pat07_M56_R

 

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Self-advocacy

One patient with a history of depression suffered intermittent hand twitching generated medical videos

with the express intention to get a correct diagnosis. As such, the data provided an avenue for advocacy

giving the consumer more credibility with the healthcare professional, proving he was not ‘making it

up’:

“So the doctors can see that I’m not making this thing up, which was the other frustration that

I was having, they would say ‘oh yeah’. You know, I had a history of depression before so they were

saying, ‘Well, funny things can happen when you get depressed’, and I was really pissed off. This was

not just making me anxious or stressed, so it was valuable for me to be able to show it to someone, like

‘here it is’ … I became more of an advocate myself I suppose.” Pat10_M49_I

Self-advocacy was especially important in dispelling the idea patients are over estimating illness with

Car06_M40_I, Pat11_M55_C and Pat16_M22_I expressing the sentiment that the value of the data in

part is showing proof that patients are not hypochondriacs. This occurs because the data is considered

‘objective evidence’ and within clinical care patients noted that the data gives the patient ‘a voice’ and

increases patients’ bargaining power as suggested by Fulop et al. (2012). An alternative descriptor was

expressed by Pat01_M41_O who likened it to “creating some kind of credibility, you know, whereas in

the doctor’s perspective, I’m sure that he gets a lot of patients coming in ‘Oh yeah, about to die’, you

know? Cramps or something like that, you know? But for the patient, that’s real. So – and I think that –

I do understand that they’ve got to kind of weigh that up to see what really is the problem and how much

patients are exaggerating. So, it’s evidence, it’s photographic evidence.”

Self-Advocacy was also present when carers used data to assert their role within families. Data focused

conversations with family making the process easier and reassuring the carers that 1) patients were

improving and 2) they were functioning as a ‘good’ carer. Pat08_MF54_R explains, “I think also

opening up those conversations family members is a really good thing, too, because they are who you

are getting your support from and so having a photo, sometimes a focus of a family conversation.” The

reassurance carers received from creating data was twofold; firstly, they were assured about the patients’

health for example, “[the photo] gave us a bit of relief that it was just ‘oh it's okay, there's other kids

getting it’” (Car02_F28_I) and they were adequate in their role as a carer. One carer mentioned that in

addition to the major reasons of Improved Health Outcomes he took photos of his wife after a stroke for

a minor personal reason that it would improve his standing with her family, “and the last reason that is

not really important is, to make her family impress on me. It's like I'm a good care taker”

(Car03_M34_R), with another suggesting it gave her ‘peace of mind’ when commencing caring for her

father.

 

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While self-advocacy may challenge the authority of the power asymmetry within the credence services,

patient centeredness does call for an increased contribution of the patient in the healthcare process. This

research demonstrated patient generated health data can produce this through the cognitive outcomes of

engagement through improving self-advocacy and instils in consumers a sense of control.

Health System Control

Generally, the sense of control was expressed as both self-advocacy and control within the healthcare

system although empowerment was also noted when the data was shared. PGHD improved the patient’s

feeling of equality, and also challenged relationships and roles within the healthcare service.

Pat06_F69_R commented, “I think that they [photographs] are actually uh something to do with the

relationship thing [with the doctor] a bit more equal. In the sense that, you know, you are acting as an

advocate for yourself so that you’re not so – uhm- supplicant to uh to medical authority.”

“I think it’s really interesting that she [Tanya] is taking responsibility for her condition and I

think that’s a really empowering thing. I think that when you’re just going to hand your body over to

the medical profession is quite disempowering… I think that what the subject is doing is a really kind of

proactive kind of empowering thing to do and a way of using the photographs.” Pat08_MF54_R

“It's the first time I've been in hospital, so I felt that strong sense of disempowerment that

hospitals bring, that whole huge institution brings and you suddenly and also, the hospital where the

surgical team only know you by name and pin number you know, your injury or your illness. So, having

the photographs, and being able to take photographs, and share those photographs meant that I felt

empowered in that institution.” Car05_M56_R

This research demonstrates the nature of PGHD, a relationship to engagement and the grounded

emergence of empowerment as a critical concept central to the use of the data for engagement. Tan, et

al. (2014) reported doctors suggested empowerment was a result of using patient generated health data

in clinical care and this research has confirmed this finding with patients and carers. In addition, it

identifies two themes under emotional outcomes including Emotional Regulation, Emotional Buoyancy

and Empowerment that are pertinent to data use.

As the physiological, cognitive and emotional engagement outcomes have now been explored the

behavioural outcomes will now be explored. Findings confirm patient generated health data is used for

intrapersonal self-involvement and interpersonal participation with clinicians (frontline service

workers), the healthcare organisation and within peer networks and the results can be grouped into four

distinct themes of Self-management of a Health Condition, Social Support, Partnership with Providers

 

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and Service and Experience Optimisation. Self-management of a Health Condition will be discussed

first and is composed of self-monitoring, self-education and self-diagnosis.

Table 4.2g A summary of engagement outcomes with definition and identifying codes

Theme: Self-Management of a Health Condition (Behavioural)

PGHD aids healthcare consumers to self-monitor of existing conditions, self-educate and self-diagnose through information

available outside of clinical care.

Self-monitoring “The main thing I wanted to track was the rate at which it was healing. So, I used

to take photographs, along with a ruler on the side of the wound and that way, we

could actually pick up, at some point that the wound had arrested.” Pat02_M48_R

Self-educating “People have a right to research and look up Dr. Google…but at the end of the

day…I think it’s the doctor’s job and profession, at the end of the day, to actually

apply their expertise and make a diagnosis and treatments.” Pat04_F38_I

Self-diagnosing “The internet has a million websites these days, that self-diagnose for people

without seeing doctors.” Pat04_F38_I

Self-monitoring

Even before digital patient generated health data patients were offered opportunities to monitor their

own condition. This most often occurs when managing chronic diseases like diabetes and improves self-

efficacy, similar to self-advocacy, in patients from diverse backgrounds (Sarkar, Fisher, & Schillinger,

2006) with self-management improving health outcomes through the acquisition of knowledge, skill and

ability (Powers et al., 2016). Patients were very interested in monitoring their own condition to improve

self-management expressing, “the main thing I wanted to track was the rate at which it was healing. So,

I used to take photographs, along with a ruler on the side of the wound and that way, we could actually

pick up, at some point that the wound had arrested” (Pat02_M48_R). When the patient was not able,

the carer took over the task, “she was about a week and a half old … she just started this huge projectile

vomiting and would throw up but three metres …we took photos and presented to the GP”

(Car07_F30_C). Generally, doctors were supportive, acknowledging that observing a patient between

appointments was difficult, and self-monitoring was useful because it helped to “monitor the lesion,

then they can seek early medical appointment and if there's any change that they've noted from the first

photograph and the second photograph” (Doc03_M38_PrimaryCare).

Self-education

Self-monitoring with PGHD promoted the second category under the theme of Self-Management, self-

education, which was a contentious issue for clinicians, despite being considered a right by patients. The

concerns for self-education are real, with one study showing that of 105 websites dedicated to

vertebroplasty education, 19% were classified as poor quality with 57% as unacceptable (Sullivan,

 

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Anderson, Ahn, & Ahn, 2014). Despite this, Pat04_F38_I expressed the right to self-educate, with the

distinction that ultimately the clinician was responsible for decision making, “people have a right to

research and look up Dr. Google…but at the end of the day…I think it’s the doctor’s job and profession,

at the end of the day, to actually apply their expertise and make a diagnosis and treatments”. The data

gathered through internet self-education was considered a source conflict with clinician’s expertise,

caused patients to get fixated on a particular outcome and could be confusing “Conflicts can be, like,

the diagnosis would be get from Dr. Google, using that image. That can engender this idea in their

mind, they can be very fixated on that idea and come with a particular diagnosis and treatment in mind.”

Despite the conflict, Doc04_M60_PrimaryCare, who was the clinician not interested in reading patient

emails, said Dr. Google shouldn’t be disregarded, tentatively endorsed its use and suggested it reduced

time to diagnosis and considered it another thing doctors needed to ‘put in its place’:

“One of the studies I saw on Dr. Google, is that if a patient puts in the right symptoms, Dr.

Goggle comes up with the right diagnosis, maybe 50% of the time, maybe. Many times, patients in the

past would come up with something they have looked up on the internet, and you think ‘Okay, you think,

this really does fit there’,…it may not be something I would have looked at straight away. I may have

gone through a, b, and c before I got it.”

Finally, patients and doctors commented that finding a legitimate source for self-education was difficult

and this is partly due the readability of most authoritative web pages, with current literature suggesting

that of 251 web pages with information on 12 common health conditions identified across sectors, the

readability of Australian sites exceeds the average Australian levels of reading (Cheng & Dunn, 2015).

In addition, self-education can lead to anxiety, but could be useful once a diagnosis was made.

Doc02_F28_Trainee suggested, “they [patients], sort of, randomly searching about leg symptoms, they

almost always have cancer… it can just, I guess add to heightened sense of anxiety…I find, I think it's

very helpful for people, once they got, sort of, a clear diagnosis.” Clearly the access and use of patient

generated health data is promoting self-education which is intertwined with the last category under the

theme of Self-Management; self-diagnosis.

Self-diagnosis

Patient generated health data and self-education often lead patients to self-diagnose medical conditions

and this was universally observed by patients, carers and doctors. “The internet has a million websites

these days, that self-diagnose for people without seeing doctors” (Pat04_F38_I), was a common

response with doctors stressing that while the data may be useful self-diagnosis can lead to misdiagnosis

and misinformation, “what happens with that medical selfie, they would have gone to people for their

opinions and the patient can misdirect the doctor by giving, maybe, false information, because she would

 

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have thought as my mother had this sort of rash, ‘I think I had some itching’, and even if she didn't have.

Clinically, it can affect the doctor’s thought, coming to a final diagnosis and treating that particular

condition” (Doc09_M52_SurgicalCare).

Misdiagnosis has medico-legal implications and while one doctor commented they would never be

‘stupid enough’ to diagnose from a selfie, others acquiesced that treating the patient also means treating

data and the ideas they present with, “he or she may try to convince me, that okay, I’ve diagnosed for

myself…It is my responsibility to convince the patient, ‘Okay. We are not going to self-diagnose, using

these’” (Doc03_M38_PrimaryCare). Patients were much more likely to self-diagnose when in contact

with their peer network and when the doctor was not available, “I've taken photos when I've been

worried and I've taken them to him [my dad], and go, ‘do I need to worry about this? Do I need to book

an appointment with the doctor?’ Because we have a doctor who, for some reason, likes to be an air

hostess, a doctor on board for flights, overseas, for a couple of weeks at a time.” This behaviour clearly

demonstrates the proactive patient in action. Patient generated health data has enabled their perspective,

empowered them within the health system, provided them with an ability to self-monitor and with skills

in self-education which have culminated in (potentially flawed) self-diagnosis, especially when doctors

are not available.

Beyond the medico-legal risks, the culmination of these factors has implications for healthcare services

wishing to co-create with patients and still maintain credence qualities. In addition to the adverse health

outcomes, patients may be unwittingly precipitating value co-destruction with providers when

attempting to take more control of their health (Robertson, et al., 2014). While the behavioural outcomes

of Self-Management are self-involved, patient generated health data is used widely in the patient network

to achieve better health outcomes. Hence this thesis will now expand on how data is used in the patient’s

peer network under the theme of Social Support composed of data sharing and information seeking

Table 4.2h A summary of engagement outcomes with definition and identifying codes

Theme: Social Support (Behavioural)

Patient generated health data collection and use can be a social activity with data shared within the peer network to update

on a clinical condition or to seek crowd-sourced advice in an effort to achieve social support, especially when this is absent

in healthcare services.

Data Sharing “[To] show everyone how bad it was. My husband had his skin cancer cut off… and

some of them were quite ugly… and so we have used it to prepare the grandchildren

for changes in, that this is why grandpa is so sick, that this is why grandpa is so

sore. I don’t know if it’s education, but just in explaining the procedures to the

younger members of the family. Because it’s less yucky then actually seeing it as a

big skin graft on his hands.” Car01_F56_R

 

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Information

Seeking

“with social media, I think it’s a bit of a connection thing as well, like if people do

see it [a photograph] and they say ‘Oh,’ you know, ‘I can sympathise’, and I think

that’s what the medical profession is lacking a lot of, like when you go and see a

family doctor in the past, they give you some kind of comfort with their words and

that kind of stuff. So you’re kind of seeking that as well.” Pat01_M41_O

Data Sharing

Data sharing for social support was very common with one clinician reflecting, “putting the photo of

the rash up on Facebook, and trying to see what people thought. I guess for the patient that could

provide, I guess a sense of, I guess, sort of, assistance from the community, and that people are caring

about what is happening with them and that can, sort of get some sympathy or empathy”

(Doc02_F28_Trainee). This was confirmed by a patient who commented, “with social media, I think

it’s a bit of a connection thing as well, like if people do see it [a photograph] and they say ‘Oh,’ you

know, ‘I can sympathise’, and I think that’s what the medical profession is lacking a lot of, like when

you go and see a family doctor in the past, they give you some kind of comfort with their words and that

kind of stuff. So, you’re kind of seeking that as well” (Pat01_M41_O). In another example Pat14_F62_R

was supported through her knee reconstruction and encouraged to continue treatment with supportive

comments that she was ‘doing well’ and to ‘keep up the good work,’ concordant with literature that

suggests social networks support adherence to short duration physical activity regimes (Hunter et al.,

2015).

Information Seeking

Information seeking included both searching for information about a medical condition and details about

health service availability. Pat04_F38_I comments, “I’m part of several lupus online support

groups…it’s very much a, you know, the person who goes ‘Oh, is this [rash in a photograph] something

I should worry about? Should I mention it in my next doctor’s appointment? Uh does anyone else have

this?’ And uhm a lot of the times, you know, instead of the information thing, it’s the, ’you’re not alone

thing’. It’s about being part of a community where people get it.” Pat10_M49_I joined a Facebook page

for Neuromyotonia and learned about a specialist in Sydney who subsequently diagnosed his condition

from a video and related tests. The sharing of online information and crowd sourcing diagnosis has

implications for the quality of information available in the network with many clinicians commenting

that symptoms generated through the patient network are not always accurate, alluding to the

misinformation and misdiagnosis mentioned in Self-Management. Clearly these themes overlap

supporting the multi-stakeholder network perspective explored in this thesis. A phenomena was

 

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explored by Ferguson (2007) in the white paper e-Patients: How they can help us cure medicine,

likening patients to hunters and gatherers of information in connected communities of care.

Clearly data has an important function in the Social Support of patients with both data sharing and

information seeking, improving a sense of connectedness through internet surrogates. In addition

patients are seeking to improve interactions with clinicians and this will be discussed in the next theme

of this research, Partnership with Providers, which has been grouped into the categories of

communication, trust and co-creation.

Table 4.2i A summary of engagement outcomes with definition and identifying codes

Theme: Partnership with Providers (Behavioural)

When used with providers in clinical care, PGHD improves communication overcoming and inability to describe a

condition, promotes trust between consumers and providers and encourages the co-creation of value in healthcare services.

Communication “photos after the operation, when I was changing the dressing, pretty much showed

an arm that was cut from elbows to palm with all the muscles sort of hanging out,

sitting on the table. And that it would have been impossible for the doctor to

understand or see that scenario without taking photos.” Pat07_M56_R

Trust “I think if you’ve got a good doctor, and I know not everyone has…you build a

relationship …there is a level of trust there that says I can bring you this

information…I can bring the information and you’ll accept it.” Pat04_F38_I

Co-creation “I took a photo and in a series of about 3 hours, you could see the breakdown of it

[the wound] happening; we were able to use it as a thing, to say this needs urgent

attention now…I bumped into one of the doctors and she told the surgeon… I think

I showed her the photo of it breaking down and she called the surgeon, and the

surgeon stepped in.” Car01_F56_R

Communication

In addition to trust, communication was the second category in this theme. Huba and Zhang (2012)

identified improved patient–provider communication as a top outcome of patient generated health data

use. This study supports these findings. It was universally discussed by patients, carers and doctors that

a feature of photographic data was that it overcame an inability to describe a condition:

“So, I think the idea when their symptoms, especially visual symptoms that are transient, and

then often it's a case when someone comes to see me as a G.P. their symptoms are already improving.

So, they [patients] are just relying on their, sort of, vague description of rashes as a lay person, it is

often really hard to figure out what it was.” Doc02_F28_Trainee

 

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“By the time I saw my doctor I had a skin graft taken and applied to my arm, so it looked pretty

normal. When I say normal, there was still stitching from my palm to my elbow. However, the photos

after the operation, when I was changing the dressing, pretty much showed an arm that was cut from

elbows to palm with all the muscles sort of hanging out, sitting on the table. And that it would have been

impossible for the doctor to understand or see that scenario without taking photos.” Pat07_M56_R

Furthermore when the data was used in clinical care it could be used as a focus of conversation or for

agenda setting (Nundy, et al., 2014a). It prompted asking questions and asking for feedback with

Pat02_M48_R commenting the data improved his participation with providers, “I would come back with

questions or feedback or, you know, the photographs, and that sort of thing. And then, you know, ask

their guidance and advice on things, as opposed to simply, you know, doing exactly what they told me

for the next fourteen days and come back in and making to them, I was actually actively making decisions

and then reviewing that with them.” In this example data enabled the patient, offered him an opportunity

for psychological empowerment, and catalysed a co-created service experience in partnership with

providers. Importantly the communication was bi-directional with clinicians also experiencing the

benefit of improved communication suggesting it also can be a prompt to ask other questions they might

not necessarily have thought to ask.

Trust

Fundamentally patients and carers understood the use of the data for participation and when asked “how

do you think the photographs affect the relationship between yourself and the doctor?” Car05_M56_R

commented, “I felt like it really improved my relationship, I've got a great doctor anyway, it sort of

created a sort of partnership type relationship.” Importantly it was noted that the doctor–patient

relationship was actually bigger than the data, has a temporal element and that good relationships were

needed to allow data to be collected share and used, “I think if you’ve got a good doctor, and I know not

everyone has…you build a relationship …there is a level of trust there that says I can bring you this

information…I can bring the information and you’ll accept it” (Pat04_F38_I). The credibility of patient

data was heavily critiqued by doctors, especially when contrasted with the authority of healthcare

practitioner generated data. However, one emergency physician suggested data use and credibility was

influenced by the relationship and trust held for the patient:

“well, if the patient takes them, you need to be sure about when they were taken and is it actually

them and you need to be sure about the providence of the photo…an ultrasound comes in from

outside….it’s all labelled with the patient’s name and identifying details … So you’d have to have some

 

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certainty around—yeah, the authenticity of the photo, wouldn’t you? So yeah, it comes down to the

therapeutic relationship or the patient relationship.” Doc07_M45_EmergencyCare

Doctors and patients agreed that using patient generated data increased the ‘sense of trust’ the patient

perceives the clinician has for them, “patients feel that we trust them… it [PGHD use] sort of creates a

relationship where the patient is sure the doctor trusts this picture” (Doc01_F31_SurgicalCare), and

that healthcare practitioner generated data increases the trust and faith a patient has for the doctor’s

thoroughness and concern, “it [HCPGD] will improve the relationship between the patient and the

doctor because usually in the conventional set up, doctors just see the lesions… in this case, when he

wants to take the photographs and to keep them as baseline measures, I think it increases the trust and

it shows the doctor is caring and really interested” (Pat04_F38_I). Additionally, one clinician suggested

using solicited data to improve the relationship by building rapport:

“If the patient’s going to open their phone and show you some photos and I say ‘listen in the

next three or four months if the problem continues or persists, please take more photos’ and if the patient

agrees, I think that an element of rapport does get built.” Doc08_M37_SurgicalCare

When discussion centred on how the data could affect elements of the relationship, patients and carers

readily talked about wanting healthcare providers to show an interest in the data as a sign of trust saying,

“I would want him to look at it, and then take it under consideration” (Car04_M45_O), acknowledging

that some doctors are likely to ignore data, especially if does not contribute to improved health outcomes,

“he looked at them but he did not like have a full look. I don’t know he kind of shrugged it away like I

don’t need those photos” (Pat12_F24_O).

Co-creation

In addition to trust and improved communication, co-creation was noted in interviews as the third

category under the theme of Partnership with providers. Co-creation is defined as the facilitation of

consumer’s value; it occurs in direct interaction between consumers and providers (Grönroos & Voima,

2013) and has been identified as a strategy to define and facilitate the patient’s contribution to healthcare

services (Janamian, et al., 2016). The results show that data was used to educate and motivate clinicians,

increasing a sense of urgency for the treatment of patient conditions. Car05_M56_R, talking about a

wound on his finger that had become infected, “I couldn't get me in to have the surgery I required and

so, having that photographic evidence was absolutely essential for me to be able to get into and have

the procedures I required in order to save my hand.” Incidentally using images as a call to action was

not the providence of the patient alone with clinicians using patient images to convince their colleagues

to treat. “I took a photo and in a series of about three hours, you could see the breakdown of it [the

 

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wound] happening; we were able to use it as a thing, to say this needs urgent attention now…I bumped

into one of the doctors and she told the surgeon… I think I showed her the photo of it breaking down

and she called the surgeon, and the surgeon stepped in” (Car01_F56_R).

Co-creation was important when sharing patient generated health data, with patient and carers

commenting that data is most useful with clinician input and that data tagging should be done by the

doctors, “I think maybe giving it to the doctor and asking them to categorise it referring to your personal

record, that's probably going to be a way better process than asking a patient or a carer to do it, because

somebody who doesn't know, I mean I don't know all the medical terms for things and couldn’t tag

something, that's obvious something that professional would be far more efficient at.” Patients

understood they had role limitations which were an implicit part of the ‘power relationship in a medical

model’, yet they sought partnership suggesting clinicians could explain and train patients on the patient

generated health data capture and use, with Pat01_M41_O saying, “I think it’s partly the doctor’s

responsibility to help educate the patient on how the tools can be used as well, to help in, not only in

self-diagnosis, but to help the doctor diagnose.” Clinicians agreed with patient generated data co-

creation, suggesting it was part of their job to educate patients on data collection:

“If someone has a chronic condition where they're going to be using a device repeatedly, it's

up to us to provide the education … we need to be teaching them to do that. If the patient has a

dermatological condition…I think we should be directing our patients to buy the best kind of technology

they can to record these photographs. Give them some pointers on how they should be taking these

photographs so that they're going to be of most use to us taking care of them.”

Doc11_M43_PrimaryCare

Finally, in the case of Car07_F30_C, shrugging off patient generated data, which is an attempt at value

co-creation, caused such dissatisfaction, that the healthcare consumers terminated their service and

switched to another provider, “we changed this paediatrician is because he was not prepared to take

any like evidential [photographic] suggestions from a patient or from me as carer.” This is a clear

instance of provider co-destruction perpetuated by traditional notions of healthcare credence services as

a provider-led domain. For Car07_F30_C, carer generated health data use enabled the carer’s

perspective through the depiction of the volume of vomit her child threw up, improved their sense of

self-advocacy by convincing her she was not making it up, empowered her within the health care system

and promoted self-management through her decision to change doctors. This was not an isolated case

with Doc04_M60_PrimaryCare recognising that patients would go somewhere else if he refused to see

data and Pat04_F38_I commenting, “One time I did find a doctor who couldn’t do – wasn’t interested

in notes and list of questions and things, I just went to a new doctor.”

 

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As demonstrated, the traditional doctor–patient relationship has given way to a culture of patient

centeredness, yet the proactive patients who take an active role in their care want clinicians to show

reflexivity when using patient generated health data. Data provided by patient’s influences

communication, trust and co-creation in healthcare services which are all facets of the theme

Participation with Providers, a behavioural outcome of patient generated health data use. The range of

behaviours the data promotes is extensive and the next section of this thesis discusses how the data is

used to Service and Experience Optimisation through resource management and patient deviance.

Table 4.2j A summary of engagement outcomes with definition and identifying codes

Theme: Service & Experience Optimisation (Behavioural)

Due to increases in empowerment, PGHD aids consumers’ ability to optimise their service experience through better

resource management. However a possible effect of PGHD is that consumers will demonstrate deviant behaviours

negotiating for services they do not need, asking for diagnosis for someone not present or providing false information.

Resource

Management

“You can monitor things yourself and you know, say, for example, that mole or

lesion or whatever if you notice a significant change in 6 months’ time, because

you’re looking at yourself and you can compare it with the original photo that was

taken. So, you might go back to the doctor in 6 months, rather than waiting the 12

months for your scheduled check-up.” Pat02_M48_R

Patient

Deviance

“I had an experience with one of the patients. I was seeing him for a particular type

of rash. I thought it could be something but he was insistent that the rash was

something else based on the picture. In tough situations like this, these were the

wrong pictures.” Doc01_F31_SurgicalCare

Resource Management

The main way patients used data in this context was to alter their own treatment plan. Typically this

mean reviewing photographs for evidence of clinical improvement and then making appointment

changes based on symptoms shown in the data. Pat02_M48_R commented the data could provide early

detection of adverse health events motivating a visit to a healthcare service “you can monitor things

yourself and you know, say, for example, that mole or lesion or whatever if you notice a significant

change in six months’ time, because you’re looking at yourself and you can compare it with the original

photo that was taken. So, you might go back to the doctor in six months, rather than waiting the 12

months for your scheduled check-up.” Conversely is was suggested by Doc05_45_EmergencyCare and

Pat01_M41_O that collecting data may become a proxy for seeking medical care or at the very least

delay it, “if she hadn’t done that [taken the photo], she may have actually presented for medical help.”

Additionally, the patient and carers identified the data could be shared with new clinicians to get a

corroborating opinion:

 

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“Yes, my sister who is a nurse. She lives down Canberra, so yes I did send it [the photo] down

to her, to have a look at and that sort of thing, and you know she gave her opinion and she said just go

and double check with the doctor.” Car06_M40_I

“For him to view and possibly they refer to some form of specialists, forwarding, because they

could gather digital image as well and he could quite forward that on to another colleague for further

investigation and also be kept.” Pat11_M55_C

Further patients may seek to diagnose without a doctor through culturally and socially appropriate

alternative health therapies. A respondent with Chinese heritage used her peer network via the mobile

application WeChat to gain skincare services, mentioning that crowd sourcing information is a suitable

alternative to healthcare professionals, “I think it will be very good to let others like, for example, if I

have a pimple, I uploaded that pictures on the database and someone will see the same pictures or if

they have a pimple and they would just to find the relevant medicine to cure them. So maybe at that time,

they don’t really need a doctor… maybe the patient can get a medicine and getting a cure by themselves

if they see that medical selfie” (Pat15_F30_I).

Doctors, patients and carers all agreed that getting timely appointments for transient conditions was

difficult, clinicians are limited because they are only with patients a fraction of the patients’ life and that

health services lacked continuity, Using data to overcome limited healthcare system resources was

discussed in relation to improving health service continuity and overcoming the lack of clinician’s

expertise.

“Doctors are always busy, and all of that, you can't get the appointments. By the time, you do

get the appointment, that rash or that sort of a condition might have changed, and so taking an image

of it, is really good.” Car06_M40_I

“If I really want to know what's going on with you [as a patient] I need data that's beyond these

little tiny touch-points that we have in the visits. So patient-generated health data is letting us get a

snapshot of what's going on with you outside of this. And, in fact, for certain things, we know that the

information is better when it's done at home or outside of a visit.” Doc11_M43_PrimaryCare

“The family doctor doesn’t have a record of you anymore and you have to have your own

record, and that’s where the visual records are really valuable because, it can translate to the next

doctor.” Pat01_M41_O

 

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It was noted that data could be used to refer between services and for a second opinion. Car05_M56_R

spoke about health service continuity issues saying, “we travelled across the States to visit other medical

practitioners and we were able to show photographically…I think that they’re [photographs] are really

very, very important useful diagnostic tool, so the patient certainly can walk around with this really

valuable information and data to take it from one professional medical provider to the next and maintain

some sort of consistency.” Doc07_M45_EmergencyCare noted the data could be used to gain a second

opinion improving the patient’s service experience by expediting care, “the medical team or the

clinician might sort of say, ‘Well, actually I really didn’t have any clue what you were describing’ and

the pictures might have all the difference. And I can say that it’s definitely that. Some might actually

expedite or facilitate their care in some way.”

Patient Deviance

The second category attributed to Service Optimisation is patient deviance. Deviant customer behaviour

refers to actions that patients take to abuse the healthcare system that “violate the accepted norms of

customer behaviour that result in harm” (Solomon, Russell-Bennett, & Previte, 2012, p. 23). The

research found no evidence that patients will take actions that affect other patients hence the research

focuses on deviant behaviour towards the organisation. This thesis categorises this as an example of

patient-led co-destruction, defined as a decline in one of the service systems where a resource is not

used in an appropriate or expected manner (Plé & Cáceres, 2010).

Deviant behaviour involves asking for diagnosis based on the data of someone not present, self-

diagnosis which delays seeking medical help and insisting that the patient’s interpretation of the data is

correct despite contradicting the clinical expert. Carers and doctors, but not patients, agreed that asking

for diagnosis for someone who is not present is possible with the data, “I have seen it in general practice.

They come for some other reason and say, I have taken this picture of my child or maybe my husband

and they have this rash what do you think of it?” (Doc01_F31_SurgicalCare). In relationships where

trust and a clinical history is established carers use data to improve management of patients without

them being present in the consultation:

“I have a good relationship and good rapport [with my doctor] and we normally fairly open,

and honest … even if I go to have an appointment for me, because I have the same doctor, sometimes

I'll discuss things about Dad because even if he's not there, and it's just to get, you know, a bit of support

or guidance or something like that. So, having an image then, if I'm talking about something that might

have occurred, is a good thing.” Car06_M40_I

 

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This reasserts the importance of ongoing relationships and trust when using patient generated health

data, however presenting inappropriate images can cause co-destruction conflicting with the clinician’s

service expertise, “I had an experience with one of the patients. I was seeing him for a particular type

of rash. I thought it could be something but he was insistent that the rash was something else based on

the picture. In tough situations like this, these were the wrong pictures” (Doc01_F31_SurgicalCare).

Four doctors commented that when patients use the data for self-diagnosis they often come to the

consultation “with a preconception about what they have and they're waiting for you to tell them the

diagnosis they want” (Doc10_M29_Trainee), and when this does not occur, patients will get a second

opinion which may have medico-legal considerations. Importantly co-destruction can include medico-

legal implications for clinicians:

“…when he gives the picture to me and shows it to me I can come to a diagnosis, but then if I

am not 100% right. Like he has proof of what the rash looks like at that point. If he takes it to someone

else and they come up with a different diagnosis. The difference in management with it might cause

medico-legal issues.” Doc01_F31_SurgicalCare

The last consequence of deviant customer behaviour can leave the well-being of both parties worse off

causing mutual co-destruction. This occurs when patients minimise other symptoms they may have,

focusing only on the ones highlighted by the data and delay seeking the service because they believe

collecting data replaces professional medical care. This was articulated by Doc05_45_EmergencyCare

who said, “access to things like the information, and the ability to take a picture is actually delaying the

patient seeking medical help. There are scenarios which, this one would be included, that it might

actually be dangerous,” and this has been documented in the literature by Robertson, et al. (2014) who

demonstrated the use of Dr. Google caused co-destruction.

This research clearly demonstrates the use of PGHD beyond just the physiological engagement

outcomes to include the cognitive, emotional and behavioural outcomes suggested by the current

literature. This research shows that in addition to Improved Health Outcomes, data provides an

opportunity for increased Self-Perception and a Preventative Mind-set, aids with Emotional Regulation,

Emotional Buoyancy and Psychological Empowerment, and encourages Self-Management and

Partnership with Providers. Lastly it is utilised for Social Support and Service Optimisation. Hence

Figure 4.1 confirms physiological, cognitive, emotional and behavioural outcomes of patient generated

health data.

 

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Figure 4.1 Categories of engagement outcomes for patient generated health data

Data Use

Physiological Outcomes

Improved Health

Outcomes

Cognitive Outcomes

Self‐Perception

Preventative Mind‐set

Emotional Outcomes

Emotional Regulation

Emotional Buoyancy

Empowerment

Behavioural Outcomes

Self‐management

Partnership with providers

Social Support

Service Optimisation

 

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4.5 Use Summary

Patient generated health data was previously defined as data a patient creates about themselves that can

be used in clinical care; importantly patients control its distribution and use, distinguishing it from

patient reported outcome measures. This research expands this definition to include any data a patient

creates about themselves to be used in clinical care and for the patient, carer or peer network well-being,

recognising data can be useful beyond clinical care. Experts have speculated a link between PGHD and

engagement, because engaged patients have better health outcomes and reduced hospitalisations. This

thesis responds to and confirms that speculation using the a-priori theoretical framework Patient

Generated Health Data as a Stimulus for Patient Engagement. Patient generated health data does indeed

affect the physiological, cognitive, emotional, intrapersonal and interpersonal behavioural outcomes of

patient engagement.

Patient generated health data research is nascent, with most research focused on the acceptably and

diagnostic use of the data from the perspective of the clinician and the healthcare provider. Hence this

thesis developed a research agenda to evaluate the phenomena from the patients’ perspective based on

physiological, cognitive, emotional and behavioural engagement outcomes using vignette based semi-

structured interviews with 34 patients, carers and clinicians about the use of patient generated

photographs. Literature suggests patient generated photographs are used to improve health outcomes

(Armstrong, 2004; Michiels et al., 2016; Sanger, et al., 2016) and the research confirms PGHD can also

be used for diagnosis and management and medical research which have previously been identified as

uses of healthcare practitioner generated data (Burns & Belton, 2013).

Current literature suggests patient generated photographs can be used for cognitive outcomes like

improved quality of life when managing chronic psoriasis (Frühauf, et al., 2012) and this thesis finds

PGHD can be used as evidence of the patient experience, data as a prompt for sense-making, memory-

making and data as a mechanism to reinforce and increase responsibility, grouped into the theme Self-

Perception. Additionally, while literature is still contentious on the role of PGHD and behaviour change

this research confirms that the data can inform some of the antecedents of change, including awareness

and a reminder of existing health related behaviours.

Tan, et al. (2014) identified that physicians thought patient generated photographs could influence the

emotional outcomes like patient empowerment. This research confirms this finding with a patient and

carer cohort and recommends data can be used for the emotional outcomes of engagement under the

themes of Emotional Regulation pertaining to reassurance and anxiety, Emotional Buoyancy, relating to

 

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the use of the data for entertainment and altruism, and Empowerment offering self-advocacy and control

within the health system.

Numerous papers cite the medico-legal fears of clinicians when patients use their own data, and this

thesis confirms under the theme of Self-management of a Health Condition, patients were self-

monitoring, self-educating and self-diagnosing through peer networks, most often when services were

not available. Despite this, patients wanted to be helpful, providing data to increase Partnership with

Providers impacting on trust, communication and the co-creation of health services. This study found

that some clinicians will not accept PGHD and will miss the opportunity to create physiological,

cognitive, emotional and behavioural engagement. This is commensurate with findings by Tan et al.

(2014) and Nundy et al. (2014) that a small percentage of healthcare practitioners will not be interested

in the data. Patient generated health data has extensive use on the patient’s peer network and this was

grouped into the theme of Social Support through data sharing and information seeking and perhaps the

most relevant and under-researched area was the findings grouped under the theme of Service and

Experience Optimisation, pertaining to resource management and deviant patient behaviours. When

patients and clinicians perceived their desire to co-create with PGHD was not addressed in line with

expectations, the data served as a cue for switching services and even service termination. This may

even promote deviant patient behaviour, which was evidenced by clinicians.

Results show that patient generated health data can be used as a stimulus for physiological, cognitive,

emotional and behavioural engagement outcomes and these can be grouped into ten themes: Improved

Health Outcomes, Self-Perception, Preventative Mind-set, Emotional Regulation, Emotional Buoyancy,

Empowerment, Self-management of a Health Condition, Partnership with Providers, Social Support and

Service and Experience Optimisation. Hence this thesis presents a comprehensive schema of patient

generated health data use based on engagement outcomes as illustrated in Figure 4.2.

 

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Figure 4.2 A comprehensive schema of patient generated health data use for patient engagement (A)

 

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4.6 Patient Generated Health Data Value (A)

The findings of this research confirms the presence of Functional Value (Chahal & Kumari, 2012;

Holbrook, 1994), Transactional Value (Dodds, et al., 2014), Social Value (Nambisan & Nambisan,

2009; Sweeney & Soutar, 2001; Teke, et al., 2012) Emotional Value (Sweeney & Soutar, 2001;

Zainuddin, et al., 2011) and supports the emergent construct of Self Determination Value which includes

spiritual and ethical value and identified by Lee and Lin (2011) and expanded upon by Dodds, et al.

(2014). This thesis demonstrates that PGHD can affect Self-Perception composed of increased

awareness, sense-making and responsibility and Empowerment composed of self-advocacy and control

within the health system which are evidence of Self–Determination Value. Elicited by the patient

generated health data, these themes allow the patient to integrate their ethics, belief and perspective into

healthcare services.

Functional Value

Concordant with the literature, Functional Value was the first noted and the most common form of value

defined by participants in this research. Described as the functional consequences of a service like

diagnosis and treatment results (Chahal & Kumari, 2012) and other psychosocial consequences like

convenience and control (Zainuddin, et al., 2011). This research considers Functional Value to be

defined by improved health outcomes and a preventative mind-set. In addition, self-management and

service optimisation in the pursuit of better diagnosis and management could also be considered to reside

in the Functional Value domain and it is interrelated with all other experiential value constructs. Patients,

carers and clinicians all experienced the functional value of patient generated health data as

demonstrated by the codes in Table 4.3

Table 4.3 Evidence of functional value as coded in interviews

Impr

oved

Hea

lth

Diagnosis &

Management

“It [data] would have a medical value and diagnostic value.”

Car02_F28_I

Medical Research “Potential value to myself would be if I can include that image in

some sort of research.” Doc10_M29_Trainee

Pre

vent

ativ

e M

ind-

set

Awareness “Definitely valuable. I think it [a video] enabled the – first of all, it

enabled me to go right, you know, here it is!” Pat10_M49_I

Reminder “It will bring back memories of the process and I know I’ll be able to

go ‘oh, wow, remember when I went through that?’. So, yes, I think

that there's definitely value outside of the clinical consultation.”

Pat08_MF54_R

 

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Sel

f-m

anag

emen

t of

a H

ealt

h C

ondi

tion

Self-monitoring “I think it has an enormous value beyond diagnosis in ongoing

treatment, including a moderate risk too….but my husband can be

confident that yes, it is healing and it is improving. So it gives him

confidence to be able to self-monitor.” Car01_F56_R

Self-education “The other thing with the photographs I’ve found valuable for in

trying to work out which type of dressing was working best.”

Pat02_M48_R

Self-diagnosis “The internet has a million websites these days that self-diagnose for

people without seeing doctors that you can almost type anything in

and they'll give you fifteen different diseases that you've got. I'm not

an exaggerator but I mean in my case it was extremely valuable.”

Pat07_M56_R

Ser

vice

Opt

imis

atio

n Resource

Management

“I think they are definitely valuable in the sense that we can't be there,

standing next to them at all times, and so if they are able to, I guess,

catalogue and document pictures a particular thing that could be

happening, that could be transient.” Doc02_F28_Trainee

Patient Deviance “I think there will be a certain amount of hypochondriacs that will

probably abuse the system, but I think for those people using it

correctly it will provide value.” Car02_F28_I

Transactional Value

Early conceptualisation of functional value included interactions with front line services, however as

the literature matured transactional value emerged primarily as the patient perceptions of clinicians’

attributes like responsiveness, consequences of trust, satisfaction, money’s worth (Chahal & Kumari,

2012). This also included an assessment of the physical features of healthcare facilities such as modern

establishment and cleanliness (Teke, et al., 2012) and the functional and psychosocial consequences of

front line provider interactions of knowledge, expertise, support, partnership and empowerment (Dodds,

et al., 2014). This thesis considers the physical features of healthcare facilities as an attribute, providing

the psychosocial consequences of aesthetic appreciation, a construct relating to emotional satisfaction.

Thus, this thesis considers frontline interaction attributes and consequences of partnership and

empowerment as the basis for Transactional Value. Partnership was experienced by all parties and is

considered an interaction where both parties contribute to the end value, with control within the

healthcare service and the consequence of empowerment primarily the experience of the consumer as

shown in Table 4.4.

 

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Table 4.4 Evidence of transactional value as coded in interviews

Par

tner

ship

wit

h P

rovi

ders

Trust “They are very valuable in a progressive, uh occasionally happen

condition and they are valuable in a remote diagnosis, in uh the

remote diagnose – in the remote area it is difficult to access

doctors and they are – they’re also valuable if you trust a certain

doctor and uh he is not with you.” Pat03_M33_I

Communication “My husband presented once again to emergency. We were able

to show them what it was like as to what it was then so you get the

timeline, that progression, it was like a visual running

commentary on what has happened and how he’s been healing.

It’s invaluable.” Car01_F56_R

Co-creation “I think that an element of rapport does get built and I think that

the patient sees it as a value and certainly patients are unfamiliar

with the legal issues and other issues that are around this

condition but they do have an autonomy and do want to be

involved in their care so, that creates an element of autonomy and

a kind of helping themselves in their health.”

Doc08_M37_SurgicalCare

Engaged patients who provided unsolicited data did so to increase their partnership with clinicians and

gain some control over the “medical sausage machine” (Pat08_MF54_R) that constituted the healthcare

service. When this occurred, they experienced the consequence of empowerment, related to a sense of

self-determination, which is the next construct to be explored.

Self-determination Value

The emergent construct of Self-Determination Value is an experiential outcome of the use of PGHD.

Self Determination Theory (SDT) is “an approach to human motivation and personality” (Ryan & Deci,

2000, p. 64) and pertains to competence, autonomy and relatedness within the healthcare service, which

may result in psychological empowerment as an end state. The intrapersonal construct of psychological

empowerment can be defined as self-determination or:

“how people think about themselves and includes domain-specific perceived control and self-

efficacy, motivation to control, perceived competence, and mastery. Domain-specific perceived control

refers to beliefs about one’s ability to exert influence in different life spheres such as in family, work,

or socio-political contexts” (Zimmerman, 1995, p. 588).

 

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Traditionally healthcare was a context with a clear hierarchical structure and roles reflecting a

paternalistic socio-political paradigm. As consumers engage in value creating processes, develop self-

determination through personal perspectives, ethics, and spirituality they gather the motivation to

interact interpersonally with clinicians using patient generated health data to optimise the service

experience and gain empowerment. Fundamentally self-determination is about self-perception through

evidence, sense-making, responsibility, self-advocacy and gaining control as shown in Table 4.5.

Table 4.5 Evidence of self-determination value as coded in interviews

Sel

f- P

erce

ptio

ns

Evidence “The first reason for this is it keep records for the condition of the

patient's medical status. So, that's evidence for what is happening at the

first time, and the second valuable point is keep a record for a medical.”

Pat13_F26_R

Sense-making “I think it’s sort of a way of coming to terms with what is happening

and way and understanding. It’s like a concrete object that reflects

what’s happening. I think they’re valuable from that perspective.”

Pat08_MF54_R

Memory-making “I’m kind of thinking about doing something kind of arty with them in

some way, making a piece of artwork about them. And it will sort of be

like something that I’ll go back to and it will bring back memories of

the process and I know I’ll be able to go ‘oh, wow, remember when I

went through that?’ So, yes, I think that there's definitely value outside

of the clinical consultation.” Pat08_MF54_R

Responsibility “I think [photographs] they’re valuable for them [patients] to take

responsibility and kind of be active about the medical condition.”

Pat08_MF54_R

Em

pow

erm

ent Self-advocacy “Well the value of it is that it's like showing proof that you're not a

hypochondriac.” Car06_M40_I

Control “So, I think that is valuable as a motivator, for, better health care and

giving the patient to have some control over being involved in their

health.” Doc08_M37_SurgicalCare

Patient spirituality and ethics have been previously documented in the literature and this study’s results

show this is all part of the patient’s perspective and an example of Self-determination Value. Self-

determination provides the intrapersonal motivation to leverage resources within the healthcare service

for psychological empowerment, something already documented in the complementary and alternative

medicine literature. Given these modalities involve the same value constructs, PGHD can be viewed

 

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alongside complementary medicine, not a treatment mechanism in itself, but as a complement to

conventional care. Paraphrasing Vincent and Furnham (1996) it is about “treating the whole person,

being more effective for the patients’ problem and enabling the patient to take a more active part in

maintaining their health” (p.37).

Emotional Value

The Emotional Value of patient generated health data has been underrepresented in extant literature

which usually takes the perspective of the provider emphasising functional diagnostic value. Previous

conceptualisations involved self-gratification, play, emotions and the aesthetics of the professional

environment (Chahal & Kumari, 2012; Dodds, et al., 2014). This thesis defines Emotional Value as the

experience of emotional regulation, balancing reassurance and anxiety, and emotional buoyancy which

includes using data for entertainment and for altruistic desires. Anxiety and reassurance was experienced

by both patients and carers, and acknowledged by clinicians. While emotional buoyancy is not the

primary motivation for using the data it was a consequence for having the data and trying to make light

of a situation as demonstrated in Table 4.6.

Table 4.6 Evidence of emotional value as coded in interviews

Em

otio

nal

Reg

ulat

ion

Reassurance “So, this reassurance and this convenience of sending photo by email

or messaging services or something like that … these are the values

from the patient side.” Doc03_M38_PrimaryCare

Anxiety “So, it [photography] is totally valuable I think to present that to a

patient and it takes away all the fear and the worry.” Pat09_MF45_I

Em

otio

nal B

uoya

ncy

Entertainment “Even if the value is minimal, you get entertainment. For me it’s – I

don’t mind seeing other people’s injuries and stuff like that.”

Pat03_M33_I

Altruism “If I had taken photographs of the day it happened, when I recorded

the pain and took pictures of the scene afterwards being in the

hospital bed or whatever. And then I had pictured today, I would hope

that they … keep it on record to show future patients. I think that

would be one of the most valuable databases.” Pat09_MF45_I

Emotional buoyancy from altruism and entertainment of the peer network is also linked to social value,

the last construct of the five-domains of experiential value in healthcare.

 

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Social Value

Social value was conceptualised early in the value literature as arising when “situational factors, such

as an illness or some specific social situation, moderate the perceived value-outcome process” (Sweeney

& Soutar, 2001, p. 208) and more recently in health value literature as “promote empowerment and self-

responsibility due to the ‘patient-centred’ nature of the CAM therapeutic relationship” (Dodds, et al.,

2014, p. 220). However, this research conceptualises it as an experiential value, related to social

interaction (Chahal & Kumari, 2011) and knowledge management (Nambisan & Nambisan, 2009).

Patients experienced considerable social value when using data which was not accurately understood

and actively dismissed by clinicians. Patients noted the use of data to enhance social interactions. Data

reinforced emotional support structures suggesting an overlap with emotional value as previously noted

in addition to their use in clinical care as shown in Table 4.7.

Table 4.7 Evidence of social value as coded in interviews

Soc

ial S

uppo

rt

Data Sharing “[Photographs] they’re valuable as a focus for relating to family

members or other people, including the medical profession.”

Pat08_MF54_R

Information Seeking “I had taken an auditory examination for my little daughter and I

just wanted the report to be checked by one of my friends, who was

an otolaryngologist. I just took a photo and share it through email

and then he replied back, okay so this is normal… these are the

values from the patient side.” Doc03_M38_PrimaryCare

4.7 Value Summary

Only two studies in the healthcare literature have looked at the value of patient generated health data

from the perspective of the patient, finding it has functional diagnostic value (Hanu-Cernat, Hall, &

Barnard, 2009) and emotional value in documenting cancer survivorship (Murthy & Wood, 2015). This

thesis examined both the health and services marketing literature and determined Functional,

Transactional, Social, Emotional and Self-determination value were all possible higher order healthcare

value constructs illustrated in Healthcare Value Conceptualised into Five Domains.

Using abductive analysis of 34 interviews, iterating between data and the literature, this research

identified the four known constructs of Functional Value (Chahal & Kumari, 2012; Holbrook, 1994),

Transactional Value (Dodds, et al., 2014), Social Value (Nambisan & Nambisan, 2009; Sweeney &

Soutar, 2001; Teke, et al., 2012) and Emotional value (Sweeney & Soutar, 2001; Zainuddin, et al., 2011).

This research also confirmed the emergent construct of Self-determination Value identified by Lee and

Lin (2011) and expanded upon by Dodds, et al. (2014) evidenced by patient Self-Perception and

 

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Empowerment. Hence the contribution this thesis makes is the discovery of the experiential terminal end

state of Self-determination Value. Figure 4.3 demonstrates how each patient generated health data

consequence is grouped into experiential values.

Figure 4.3 The experiential value of patient generated health data

The literature and Study 1 confirms the presence of the abstracted experiential values of patient

generated health data. To triangulate these findings in clinical care this research used semi-structured

interviews in Study 2 to confirm the experiential value of the data in the field.

 

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5.0 STUDY TWO RESULTS

5.1 Introduction

As discussed in Chapter 3 a mixed methods pre-experimental research design was used as the

phenomenon of patient generated health data engagement cannot be separated from its context. To

understand the ‘real-world’ effect of patient generated health data on carers this thesis conducted a

clinical trial in Lady Cilento Children’s Hospital, Brisbane, Queensland, Australia. Parents of children

undergoing laparoscopic appendectomy were asked to participate in a research project with the aim of

determining post-surgical wound infection from parent photographs and to explore the effect of

generating these photographs on engagement. This study is designed to answer Research Question 3:

How does patient generated health data use influence co-creation in credence services?

A pre-post design and semi-structured interviews with thematic analysis were employed. This chapter

begins with an introduction (5.1), followed by an overview of sample profile, photography quantity and

quality data and outline of the pre-experimental trial (5.2). Next, details of the results are explored, the

research questions are answered and the theoretical frameworks are modified, adding emergent

constructs (5.3 - 5.5). Then the implications of Study 2 are summarised for the final chapter of this thesis

(5.6). Next psychological empowerment in credence services is discussed (5.7) and the implications for

Study 1 and Study 2 results (5.8-5.9)

5.2 Overview of Sample Profile

Participants were required to be the main carer of children aged 0-17 undergoing a laparoscopic

appendectomy at Lady Cilento Children’s Hospital. The protocol inclusion stipulated that parents must

own a smart phone with a flash, have taken a mobile phone photograph in the last year, have email

access from their phone and a good comprehension of the English language. A convenience ‘all-comers’

sample of 30 parents was sought and qualitative saturation was expected at 30 participants. The

quantitative findings of the pretest-posttest design were used to gather evidence for interviews, the

findings of which are reported qualitatively, aligning with the critical realist perspective. Participants

were recruited between December 4th 2016 and February 2nd 2017 onsite in Lady Cilento Children’s

Hospital. A summary of participants, the number of photographs and quality characteristics are provided

in Tables 5.1, 5.2 and 5.3. For a visual guide to acceptable and unacceptable images see Figure 5.1.

 

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Table 5.1 Study 2 photograph characteristics

Enrolled Participant ID Sex Parent Age (yrs) Childs Age (yrs) Education Carer Income Post Code Rurality 1 Par01_F_Rural F 31-40 4-12 Degree >$120,000 4508 Rural 2 Par02_F_Urban F 41-50 4-12 Degree >$120,000 4059 Urban 3 Par03_M_Urban M 41-50 4-12 Degree $80,001-120,000 4034 Urban 4 Par04_F_Urban F 51-60 12 + Degree >$120,000 4171 Urban 5 Par05_F_Urban F 31-40 1-4 Degree $80,001-120,000 4069 Urban 6 Par06_F_Urban F 41-50 4-12 Degree >$120,000 4122 Urban 7 Par07_F_Rural F 31-40 4-12 TAFE $80,001-120,000 4503 Rural 8 Par08_F_Rural F 41-50 4-12 TAFE $30,001-50,000 4213 Rural 9 Par09_M_Urban M 61-70 12 + Post Graduate >$120,000 4061 Urban 10 Par10_F_Urban F 41-50 12 + Post Graduate $80,001-120,000 4010 Urban 11 Par11_F_Urban F 31-40 1-4 High School $50,001-80,000 4078 Urban 12 Par12_F_Urban F 41-50 12 + Degree >$120,000 4031 Urban 13 Par13_M_Rural M 41-50 4-12 High School $80,000-120,000 4510 Rural 14 Par14_F_Rural F 31-40 4-12 High School $80,000-120,000 4500 Rural15 Par15_F_ Rural F 41-50 12 + Degree $80,000-120,000 4305 Rural 16 Par16_F_Urban F 31-40 4-12 Post Graduate $80,000-120,000 4152 Urban 17 Par17_F_Urban F 41-50 4-12 Degree $50,001-80,000 4070 Urban 18 Par18_M_Urban M 51-60 4-12 TAFE >$120,000 4171 Urban 19 Par19_F_Rural F 18-30 1-4 TAFE <$30,000 4551 Rural 20 Par20_F_Urban F 31-40 4-12 Degree $50,001-80,000 4113 Urban21 Par21_F_Urban F 41-50 12 + Degree $30,001-50,000 4165 Urban 22 Par22_F_Urban F 31-40 4-12 Post Graduate >$120,000 4069 Urban 23 Par23_F_Urban F 31-40 4-12 High School $50,001-80,000 4179 Urban 24 Par24_F_Urban F 18-30 1-4 High School $50,001-80,000 4032 Urban 25 Par25_F_Urban F 41-50 4-12 Degree $80,001-120,000 4105 Urban 26 Par26_F_Urban F 41-50 4-12 Degree $30,001-50,000 4053 Urban 27 Par27_M_Urban M 41-50 12 + Degree $80,001-120,000 4036 Urban 28 Par28_F_Urban F 51-60 4-12 High School $30,001-50,000 4073 Urban 29 Par28_F_Urban F 31-40 4-12 Degree $30,001-50,000 4054 Urban 30 Par30_F_Urban F 41-50 4-12 Degree $30,001-50,000 4178 Urban

 

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Table 5.2 Study 2 participant characteristics

Participant Characteristics

Gender Female (21) 80.8% Male (5) 19.2 %

Parent Age 18-30yrs (1) 3.8% 31-40yrs (6) 23.2% 41-50yrs (15) 57.7% 51-60yrs (3) 11.5% 61-70yrs (1) 3.8%

Child’s Age <1yr 0% 1-4yrs (4) 15.4% 4-12yrs (15) 57.7% >12yrs (7) 26.9%

Income <$30,000 (1) 3.8% $30,001-50,000 (6) 23.1% $50,001-80,000 (5) 19.2% $80,001-120,000 (8) 30.8% >$120,000 (6) 23.1%

Education High School (4) 15.4% TAFE College (10) 38.5% Degree (9) 34.6% Post Graduate (3) 11.5%

Rurality Urban (23) 77% Rural (7) 23%

Table 5.3 Study 2 photograph characteristics

Photograph Characteristics

Photographs Per Pat 1 (4) 15.4% 2 (1) 3.8% 3 (3) 11.5 % 4 (4) 15.4 % >5 (14) 53.9 %

Quality Check Total Acceptable 102 (95.4%) Total Unacceptable 5 (4.6%)

Error Too Dark (2) 1.9% Lack of Focus (1) 0.9 % Incorrect Colour (1) 0.9% Too Contrasted (1) 0.9%

 

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Figure 5.1 Study 2 photograph characteristics

Acceptable / Ideal for Interpretation

Unacceptable / Difficult to interpret

Acceptable Acceptable Incorrect Colour Too Contrasted Too Dark

 

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Five males and 21 females completed the trial by taking between 1and 6 photographs of their child’s

surgical site wounds over 10 days. Four participants did not complete the trial and are not included in

the results. The 26 remaining participants were aged between 18-70, with children aged between 1 and

17 years, had individual incomes spanning <$30,000 to over $120,000 and had at a minimum a high

school education, with 76% of participants residing in urban areas of postcodes <4200. Of the 105

images sent to the surgical team approximately 95% passed the quality check done by a professional

photographer, with two images too dark, one incorrect colour, one too contrasted and one out of focus.

Surgeon CB and BP considered all images acceptable for the detection of SSIs and therefore the trial is

considered feasible from a provider’s perspective.

In order to confirm the Study 1 findings in clinical care and answer Research Question 4 participants in

Study 2 completing a pre-post questionnaire and interview. A manual inspection of the differences

between questionnaire 1 and 2 was conducted and a difference in answers was considered to have

occurred when the numbers provided in the post-test were at least two points different from the pre-test.

As this demonstrated a possible example of a change in engagement, these changes were included in

parent interviews where participants could clarify if the change occurred and if it was attributable to

PGHD. Using the same interview technique as Study 1, parents were asked the introductory, direct and

probing questions about gathering PGHD in a real-world setting. See Appendix J.

Interviews with 26 participants totalled 10 hours and 36 minutes of audio records, ranging from 11:51

mins to 48:45 mins with the average time being 24:29 mins. In Study 2 all participants were met in

person during the clinical trial, hence face-to-face contact was made prior to the phone interview. The

collection and use of patient generated health data as a consumer resource affects patient engagement

heterogeneously. Not experiencing engagement is also an outcome hence the shorter interviews were

also indicative of a result, low or no engagement.

When participants were asked if the photography was difficult, all participants expressed that it was

easy, with some considering it much less difficult than expected. A few participants had difficulty with

the placement of the scale, however this did not affect the feasibility of the images to be used for SSI

detection. For example, Par01_F_Rural said, “It wasn't difficult at all. It was pretty much moving her

underwear down so that we could see the bottom incisions. When we did do it, the hardest part was

probably getting the tape to stick in the right spot. But other than that it wasn't difficult at all.” Hence

the trial is also feasible from the patient perspective and future trials should consider sending SMS

reminders as suggested by several parents. Study 2 confirmed new PGHD use attributes, thematic

consequences and a new emergent value for the collection and appropriation of the data in clinical care.

Interestingly the absence of information seeking behaviour is critical in understanding this phenomenon

of patient generated health data in the credence service context.

 

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5.3 Patient Generated Health Data Use Attributes (B)

Through axial coding and thematic analysis, Study 2 sees the emergence of the cognitive outcomes of

service confidence, satisfaction and trust grouped into the new theme Service Assessment and the

emotional outcomes of self-confidence and health situation control added to Empowerment and

supported autonomy in Partnership with Providers. See Appendix L the analysis of use attributes,

consequences and values found in Study 2 followed by a description with participant quotes.

While Study 1 delivered an understanding of how patient generated health data was perceived by a

patient, carers and providers, Study 2 explored the use of PGHD in a specific service context. As such,

this research examined how the data affected the experience of the service and is the data that could be

used as a mechanism for service assessment. The pretest-posttest ratings of satisfaction and service

confidence (akin to the service reliability) were identified by participants as key ways to assess the

service and have been grouped under the theme Service Assessment.

Table 5.4 A summary of engagement outcomes with definition and identifying codes

Theme: Service Assessment (Cognitive)

The use of PGHD in clinical care is a cue for service assessment pertaining to satisfaction of the use of data, improved

service confidence when the data aids understanding of the healing process leading to increased trust with providers and

increased mutual respect.

Satisfaction

“I don't know if that’s offered at Redcliffe [hospital] with extra care afterwards and

things like that and the opportunity to send those pictures and assess the risk of

infection and things like that to a trained professional have a look like rather than

making your own judgment or Googling. I think that’s really important, and that’s

what I mean when I say satisfaction.” Pat03_M33_I

Service

Confidence

“If it became a regular thing. I would have confidence in the system rather than the

individual doctors. I would have more confidence that the problem has a chance of

being resolved that you know my understanding of you know none of the doctors are

infallible.” Par03_M_Urban 

Satisfaction

In general, credence quality service assessment relies on evaluating the frontline service interactions

through a prism of relational factors between the consumer and provider (Pressey & Howden, 2008).

However self-serve technologies are now introducing satisfaction related to convenience by time saving

(Dabholkar, et al., 2003), control and fun (Collier & Sherrell, 2010; Meuter, et al., 2003). Satisfaction

was present and discussed in interviews, but remains an indistinct concept, conflated with service

confidence, reassurance and going beyond what is expected.

 

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Study 1 suggested PGHD could improve satisfaction and in Study 2 many parents commented that was

indeed the case. Par10_F_Urban was enthusiastic about her service experience, commenting that

satisfaction was about “[when] those photos had gone back to the surgeon you know that that feels like

going above and beyond the normal standard service.” Pat04_F38_I described it as the surgeon having

an investment that went beyond “just ticking the boxes” and this was echoed by Patient 25 who

discussed trying new treatment options was a reason for greater satisfaction and Pat03_M33_I who

recognised the services were not available at other facilities:

“I don't know if that’s offered at Redcliffe [hospital] with extra care afterwards and things like

that and the opportunity to send those pictures and assess the risk of infection and things like that to a

trained professional have a look like rather than making your own judgment or Googling. I think that’s

really important, and that’s what I mean when I say satisfaction.” Pat03_M33_I

This evidence suggests that satisfaction is only perceived when the usual levels of service are exceeded,

and is a poor reflection of the affect PGHD has on the cognitive outcomes of engagement. Additionally,

satisfaction as a measure opposes the value based paradigm currently applied to health service research.

As such, a more commonly raised concept of service confidence provides a better understanding of

patient generated health data’s impact in this context and may provide a better measure of service

assessment and will be discussed next.

Service Confidence

Service reliability, akin to service confidence, occurs via heuristic observations of trustworthiness,

perceived competence, perceived risk, empathy and responsiveness and is another means of credence

service assessment (Galetzka, et al., 2006). While service confidence has received little attention in the

literature it is present as a construct in SERVQUAL developed by Dabholkar, Thorpe, and Rentz (1995).

Confidence in the service was widely discussed with parents distinguishing confidence in the individual

doctor and confidence in the service. Study 1 demonstrated that healthcare services can be dehumanising

and disempowering and is evidence intervention provided confidence after a system failure. In Study 2

Par03_M_Urban recalled their diagnosis delay saying, “the kids just sitting there screaming at it. It’s

the exact symptoms [of appendicitis] the pain started into the belly button moving down to the lower

side all that kind of stuff. When I say that you know we've sort of lost a bit of confidence in the medical

system, that's what I mean.”

Despite this delay the parent was very happy with the results of the photography intervention

commenting that: 

“If it became a regular thing. I would have confidence in the system rather than the individual

doctors. I would have more confidence that the problem has a chance of being resolved that you know

my understanding of you know none of the doctors are infallible.” Par03_M_Urban 

 

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Indeed the use of PGHD is a way to assess credence services situations, when the disparity between

healthcare consumer and provider is present.

Hence Service Assessment composed of satisfaction and service confidence was an additional theme

identified in Study 2 and will be included in the final model of use attributes and thematic consequences.

Trust which was initially grouped as a behavioural mechanism grouped under the theme Partnership

with Providers will be included here as a cognitive attribute of the service. Another important outcome

which had both cognitive and emotional dimensions was self-confidence. This has been grouped with

another new attribute of health situation control under the thematic consequence of Empowerment

adding to self-advocacy and health system control observed in Study 1.

Empowerment

Self-confidence

Patient generated health data offered parents an endorsement of their own ability to care, it was regularly

mentioned it impacted self-confidence:

“I was more confident, again taking medical images sounds complicated and because I’m a

banker and have nothing to do with medical type things, just to me it was out of my knowledge zone and

afterwards, it is not hard at all.” Par10_F_Urban

“I guess what it meant, you just feel confident that you can take it [the image].” Par26_F_Urban

Additionally, self-confidence also related to perceptions of carers by patients with two parents

suggesting their children had a higher sense of confidence in their caring abilities. Par15_F_ Rural

suggested, “I think he [her son] got more confident with what we were doing because we were lifting

his shirt and having – even though for most of it, it was covered – but even though once it was uncovered

it was sort of ownership of what it was and taking the photos.” Par06_F_Urban took the view that the

images increased trust between her and her son using the images related to confidence in her caring

ability noting, “I think it was spending time together and him feeling confident that I'm able to give him

the care that he needs was – is part of that relationship where you share experiences and he can build

trust in me and I can build trust in him.”

Health Situation Control

Re-establishing a sense of control is a coping mechanism and was important to many participants.

Par04_F_Urban clearly articulated this saying, “when you're just in an emergency situation you can feel

very disempowered as a parent you can be questioning yourself a lot about the decisions you've made

up until that point which of course was the wrong decisions because your child is in emergency.” When

asked “how did the medical photographs affect your sense of control?” parents talked about volitional

 

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control over their own ability to take the photographs and become a partner in the healthcare process.

Par03_M_Urban:

“Yes I think it made you feel like you're being proactive. At least I think. I mean I wouldn’t

really say control. I just kind of felt that if there were complications, you wouldn't, you'd feel like you'd

been a little bit more proactive, towards leading to any assessment of the complications that happened

later on.” Par03_M_Urban

Additionally, control when carers managed patients was expressed as important, suggesting control has

intrapersonal and interpersonal aspects namely involvement in the peer network and participation with

providers. Par08_F_Rural discusses, “I think because if you feel under control in control of your own

child’s health you can take a deep breath because you find they [doctors] are working with me. And I

know that they will do all that they can to help your child as well.”

Despite consumers demonstrating more control over their health situation, gaining empowerment, the

behaviour of Information Seeking prevalent in Study 1 in the theme of Social Support was largely absent

in Study 2 and will be discussed next.

Social Support

Information Seeking (ABSENT)

A notable outcome of co-created engagement was the absence of the information seeking behaviours

prevalent in Study 1. Approximately half of all participants mentioned the absence of this behaviour,

noting they didn’t need to search online or use the peer network for information seeking potentially

reducing instances of self-diagnosis and this has been attributed to co-destruction for the provider

(Robertson et al. 2014). The reasons given were both that a diagnosis was already made, and that due to

the remote support of the doctors’, self-diagnosis was not required:

“The big thing is this Doctor Google where people go on and diagnose their children themselves

which we've done many times. But to have knowledge that the image you sent has been looked at and

that they are going to contact you. If something goes wrong then I think that a valuable resource because

it means that you know you are kept informed about your child's health not just from your perspective

but from them medical professional.” Pat01_M41_O

However not all the absent behaviours were explained by the collection of photographs. Other

participants suggested that they did not do it because they considered the results to be unreliable

(Par06_F_Urban), that if a wound is infected it is easy to see and ‘common sense” knowledge

(Par07_F_Rural), and that the healthcare professionals had provided all the information needed.

Par28_F_Urban was the only respondent who mentioned searching for information post-operatively

saying, “it was more a general Googling of your appendix and the surgery itself, not so much the healing

 

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process afterwards. I think we felt we were pretty well informed after we left the hospital in what to

expect with her healing.”

The absence of information seeking behaviour appears counter-intuitive to engagement when only

defined as behaviours like performing health related tasks. Even with the definition provided in this

thesis of physiological, cognitive, emotional and behavioural outcomes, this finding requires scholars to

consider how engagement is defined, and even if engagement is the right mode to establish the effect of

patient generated health data on a patient population. What can be extrapolated from these findings is

that intervention which provides patient with information will reduce instances of information seeking

and may also be related to the remote support offered by the surgeons in the clinical trial. This

demonstrates a new use attribute expressed by patients as feeling ‘backed-up’ which this thesis defines

as supported autonomy, another facet of Partnership with Providers. Additionally, with consumers

taking on more responsibility they noticed they were ‘taken more seriously’ which this research

considers a feature of interpersonal respect. Both will be discussed in the next section of this thesis as a

behavioural outcome in partnership with providers.

Partnership with Providers

Supported Autonomy

In addition to communication and co-creation the notion of the allowing patients to generate data

affected parents’ perceptions about the when the service ended and feelings of being supported through

the healing process. This attribute has two slightly contradictory elements, patients experience a sense

of autonomy in their health situation yet are still supported by healthcare professionals through remote

diagnosis of the images. While this is not an example higher affective commitment with the provider it

does indicate a higher sense of emotional reassurance through Partnership with the Provider as

Par10_F_Urban discussed:

“For me, it's all to do with the health care service it's got to do with the fact that I wasn't left

alone when you know the discharge door swung shut. It was [remote diagnosis] there is back-up, there

is that person who is able to check that I'm doing well, she's doing fine, but I'm doing fine as part of my

monitoring of her incision points. So, it was that level that it felt like an extended service. It felt like

there was still support for you know 10 extra days, that at the front door hadn't shut it closed. I wasn't

left to figure out on my own.” Par10_F_Urban

This attribute was frequently mentioned and described as parents being ‘backed-up’ (Par03_M_Urban,

29), ‘actively doing this together’ (Par15_F_ Rural), ‘health professionals are behind you’

(Par28_F_Urban) and ‘fake autonomy’ (Par10_F_Urban). Fundamentally it describes parents being

involved and engaged in the task of collecting images and the process of sharing the images provided a

 

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pathway to partnership and empowerment. Parent 10 continues, “I suppose it's about autonomy. So, you

could engage with people but unless you enable them to be or have the capabilities to be autonomous

then, they're not going to be empowered. It might be a bit of a fake autonomy because I know the medical

practitioner is still in charge, whoever is looking at those e-mails and the photos are still in charge. But

it, I wasn't having to you know go back and check with “mummy” with what I was doing was correct. It

didn't feel that way, it felt more of a partnership.”

Respect

A regular theme prominent in Study 2 was parents recognising that through the act of providing data

they gained greater attention. Typically, this was expressed as being taken more seriously and attributed

to being more aware of the health condition, proactive when caring and taking on greater responsibility

for their child’s health. Par08_F_Rural experienced greater respect when she alerted medical staff to a

possible infection discovered while her child was still in hospital:

“I think that they probably may take you a little bit more seriously because you said you were

aware that you know 12 hours ago that wasn't there, or six hours ago that wasn't there, and then

suddenly it was something like we have maybe a bit more respect for parents that are a bit more aware

of the child's condition.” Par08_F_Rural

Additionally, this was linked to partnership with providers, with consumers deriving transactional value

with Par08_F_Rural commenting as if they were in the position of a doctor “we [the doctors] take you

[parent], we take this seriously you know this what we're going to help you and you know if there is any

changes, we're here as well. I think that was, I think that was valuable. The nurses took it really seriously

as well.”

Support for this concept was present in Study 1 with Car01_F56_R suggesting, “in an instance of a

doctor that I find is not taking me seriously, I think the photos do help,” and Car05_M56_R articulating

that respect was attributable to managing his own wounds “was able to monitor my own progress, I was

treated with a certain amount of respect that I had the intelligence to sort of keep an eye on this.” While

clinicians didn’t acknowledge that PGHD increased their respect for patients,

Doc05_45_EmergencyCare commented that clinician-taken photographs do increase a patient’s sense

they are being taken more seriously using data in consultation with others, “I think it’s that they really

feel the sense of attention, that you’re taking it very seriously – so seriously, you have to show a picture

to someone else.” This was confirmed by Pat06_F69_R who commented, “I think that [clinical photos]

actually gives me a bit more confidence that the things that concern me are being taken seriously.”

 

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Finally Pat10_M49_I recalled his own experience of sharing a video of involuntary spasms, “I presented

it first to my GP, and he’d always been really supportive, but when he saw the video, particularly of my

legs and the muscles spasming I suppose, and my fingers just working independently. I think he got a

bit more serious about the whole thing. It was definitely a help, and definitely there was a change of

attitude.” This thesis attributed this change in attitude to increased respect for the patient.

While Study 1 delivered an understanding of how patient generated health data was perceived by a

patient, carers and providers, Study 2 could explore the use of PGHD in a specific service context.

Results show the new attributes satisfaction and service confidence grouped with the existing attribute

of trust under the new thematic consequence of Service Assessment a cognitive outcome of engagement.

Additionally, self-advocacy, self-confidence and health situation control grouped with health system

control under the theme of Empowerment are an emotional outcome of engagement, and supported

autonomy and respect grouped with communication and co-creation under the theme of Partnership

with Providers are behavioural outcomes of engagement.

5.4 Patient Generated Health Data Value (B)

Thematic analysis of the interviews in Study 2 found an emerging theme of Efficiency Value in addition

to the five identified value domains found in Study 1. An often-mentioned theme of the use of PGHD

in clinical care was the notion of consumer service optimisation which potentially leads to Efficiency

Value. Indeed, this value related not only to the consumers’ desire to quickly access services, but had

efficiency implications for their individual situation akin to quality of life as demonstrated by Frühauf,

et al. (2012). Par13_M_Rural explained the personal time efficiency and financial efficiency of using

the extended service offered them, “[it is] easier for aftercare for a surgery to be able to take photos

rather than come in and have to see the surgeon. So, from a timesaving – even from a taxpayer

perspective, [it should] hopefully cost less as well.”

Efficiency also had direct effects on the outcomes of patients with Par30_F_Urban commenting, “I do

work, the running around to and from, it's a bit of a hassle…so any time that I need to not be at work,

that's a day that I lose as my wage to start off with. Having to drive around unnecessarily, it would save

me money and time as well. Also for the child, like if she didn't – imagine if she wasn't – especially now,

like with these hot days, imagine why would I put her in the car, driving all the way for someone that

could have a quick look at a picture and say, that's all good.” Hence Efficiency Value has been included

as an instrumental value of PGHD along with functional, emotional, transactional, self-determination

and social value which were confirmed in clinical practice through Study 2.

 

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Functional Value

Functional Value was the most discussed experiential value of patient generated health data in Study 2.

Parents regularly commented that the photography helped them monitor their child’s condition. The

action of photography standardised parental checks with parents suggesting they may not have looked

at the wound as often, or at all. The photography offered objective evidence for an opportunity to reflect

on the condition overcoming subjectivity and forgetfulness, “taking the photos I was able to flick back

to the previous photos and look at how it was changing (Patient30).This in turn affected their child’s

health outcomes by parents checking for wound infection with providers “well you will pick up whether

it is infected or not, even though I'm sure she would've told me knowing my child” (Par17_F_Urban),

with the ultimate value being the health of the child which was often described in terms of the Functional

Value of being healthy and that patients “will be normal. Before she was in excruciating pain, and the

fact that after she is better and improving and the wounds have healed nicely” (Par07_F_Rural).

Emotional Value

Emotional Value was the second most discussed value of patient generated health data. Par01_F_Rural

links the photography, her perceived partnership with providers evidenced by ‘faith in the system’ and

suggests that as a self-confessed ‘anxious’ patient she will experience reassurance and a reduction in

anxiety receiving emotional value as an outcome of the use of PGHD.

“like I said before it [the photography] takes away the fact of ‘oh I'm going to have to pay to

go to the doctor’ ... [instead it is] I've sent the photos off and I've got a reply…I think it gives you more

faith in the whole health care system and in the surgeons and in the belief that they are not just there

for while you are in hospital they are there for when you leave hospital as well. I would just decrease

anxiety. It would make you feel like you're doing everything you can to help your child get better.”

Other emotional value was attributed to being able to access services in remote locations or when doctors

are not available to view the images and that provided reassurance to underserved communities.

Efficiency Value

One surprising results of this study is the emergence of the third most valuable theme to patients

Efficiency Value. Parents talk about managing their own resources, or resources within the health system

to optimise their choices as a consumer, and improve their experience of the system resulting in the

perception or experience of Efficiency Value:

“I'm more than happy to participate in any research that will make things more efficient or save

resources. If any of my children had to have more surgery and somebody said look we're only going to

 

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monitor you via medical photos that is fine. Queensland Health and the government haven't got so much

money, so many resources. So, if we can cut out the people if we can find ways more efficiently dealing

with the people who only just need reassurance and don't need to you know take up time with doctors.”

Indeed, patients and doctors considered the emotional management of patients as a legitimate part of the

healthcare job, but that it may not require a face-to-face visit, freeing up resources for other patients.

Finally, Par25_F_Urban suggested that the efficiency would occur through early detection “it’s having

that early awareness. So, in the event that something did go wrong, well it’s early – I suppose early

intervention rather than waiting for it to get really disgusting; so yeah, definitely a high value” and

could offer better quality of life for the patient through, “time to get other things done and spend time

with family or work, yeah, other commitments.”

Transactional Value

Proactive patients are interested in being active participants in clinical care with providers and this is

best summarised by Transactional Value. This concept was centrally linked to partnership with

providers, service and experience optimisation, and self-perception. Parents fundamentally recognised

the value of co-creation, that notion it perpetuates partnership with providers and can lead to the

experience of Transactional Value.

“It's almost like having a backup, someone actually there to – if I did miss something or something

was going on that I wasn't aware of, that there was someone there sort of also monitoring it as well. So,

it's kind of almost like having a little doctor in your back pocket almost, that they were sort of – not

having to – didn't have to go somewhere to make sure he was doing – like it was all progressing well.

The value is huge, like it's kind – as I said it's like having somebody there that is not physically there

and you're not having to do anything apart from taking a couple of photos.” Par28_F_Urban

Self-determination Value

Self-determination was the fourth most spoken of value associated with PGHD nearly on par with

Transactional Value. This experiential value was generated through self-monitoring, offering greater

self-perception and related to the identity of being a responsible parent.

“I've monitored it more than I probably would have had I not had to take the photos. It was

really good for me because otherwise my management of time can be quite poor sometimes and I would

– may forget to – I probably would have forgotten to check his wound. It's a bit of parent guilt, me

thinking I should have done that, I could have done a better job.” Par06_F_Urban

 

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It was described as having outcomes for patients, was an example of parental love (Patient05) and could

be a record of their experience when they are old enough to understand with Par30_F_Urban

commenting, “I will keep and pass it on to her when she grows up.”

Social Value

The least spoken of experiential value was Social Value. Earlier in this chapter the absence of

information seeking was discussed and while the images were shared with immediate partners (e.g., the

other parent) the use of images for social value was very limited. However, like the finding in Study 1

when parents shared images it was to gain social support and to offer others emotional reassurance.

“Day Zero, I had them on my phone obviously when I got home I sent them to her and said this

is what the scars look like. I think she's quite relieved because she realised that you know she held so

she wasn't going to leave, you know long scars and things like that the scars are you know literally a

centimetre or so if that. I think my friend was very relieved that she wasn't going to have to go through

what I went through.” Par17_F_Urban

Study 2 confirmed the existence of all experiential value states of Functional, Transaction, Emotional,

Self-determination and Social Value. Results also included an emergent construct of Efficiency Value,

which is more prominent when data is used in-situ. Fundamentally all values were linked to a range of

use and thematic consequences suggesting that strict classification of the use, consequential themes and

values is not possible. Hence the final model of use, attributes and values will not be separated into strict

physiological, emotional, cognitive and behavioural categories, but will suggest tacit multi-faceted links

between layers, which increase in abstraction from use through themes to value.

5.5 Patient Generated Heath Data Engagement

When engagement is broadly defined as any relevant physiological, cognitive, emotional, and

behavioural dimensions all participants in Study 2 exhibited an engaged state. The most common new

behaviours were taking the images, sharing them with the peer network and providers, but not using

them to seek information to aid self-management. Participants experienced an increased health situation

and health system control, self-confidence in their ability for self-advocacy and that their ‘voice’ was

heard in the health system. Data increased their personal sense of responsibility, satisfaction and service

confidence, akin to service reliability assessment. See Appendix K for the results of the manual

inspection and analysis of engagement.

For a more precise notion of engagement, participants in this study were asked, “When you took or used

the medical images did you feel engaged?”

 

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Only three participants in Study 2 said they did not feel engaged; two of whom did not take any

photographs at home, but did complete the initial image in hospital and an interview. Parents attributed

engagement to involvement in a health situation from simple behaviour with Par16_F_Urban

suggesting, “just having to make that effort to take that photo felt engaged.” Others commented on

engagement with providers, the peer network and the research project and being part of a bigger process.

“We're going out – you go out of your way to do it so I guess you're engaged just by being part

of it otherwise you wouldn't be. So, you are part of something. You are actually getting the camera

ready or getting the person ready. You are engaged in getting the outcome.” Par15_F_ Rural

“I did because I felt like I was doing this for a purpose. I felt like I was being engaged with the

program and what was happening and the people that were going to be receiving those and viewing

those.” Par23_F_Urban

“Engaged as a part of the process; so I was actually providing some information back to the

doctor as well so he could have that information, or to yourself as well, as part of the study.”

Par25_F_Urban

Interestingly Par10_F_Urban noted the difference between the appendectomy of her first child, where

she did not take images, and the experience of her second child, creating data. This suggests higher

levels of engagement through responsibility and the acquisition capability (expertise) in data collection.

“So, I actually felt more engaged in her post surgery management than I did with my oldest

daughter who had her surgery it was two years ago last November. So, you know there was nothing I

could do for her because I didn't know. So, you know she had to go to the doctors for a follow up and

all that sort of stuff but with [name removed] it's kind of like you know having those medical photos

going to a medical practitioner has meant that I felt more and more engaged, more involved and more

responsible, I suppose. I had to be. I was given some sort of capability to assist in the process.” Parent

10

When using patient generated health data both Study1 and Study 2 participants described engagement

as ‘making an effort’ (Studies 1 and 2), using the data with the provider (Study1) and being part of the

service process (Study 2) fundamentally filling the role of a partial employee (Mills & Morris, 1986).

Indeed providers, in this case clinicians and health services, are value recipients or partial consumers of

patients’ effort and information fitting with post-modern service perspectives (Manolis, Meamber,

 

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Winsor, & Brooks, 2001) but providers may perceive this as increasing their workload and job stress

(Hsieh & Yen, 2005; Hsieh, Yen, & Chin, 2004) when the data cannot be facilitated because of

inhibitors, or conflicts with their own data. In this research, proactive patients as partial employees

demonstrated overcoming limitations of inadequate service systems by taking their data between the

hospital and a General Practitioner who cannot access their hospital medical records. Increased control

of the health system and the acquisition of responsibility and/or capability are features of psychological

empowerment which literature suggests is an overarching process composed of patient engagement

(Fumagalli, et al., 2014). Empowerment and self-determination were regularly discussed in Study 1,

with supported autonomy, increased health situation and system control expressed in Study 2. Hence

this thesis identifies empowerment as a relevant construct that may be instigated by patient generated

health data and patient engagement which could impact on the service system when patients become

partial employees.

5.6 Summary: Use and Value

Study 2 sought to answer RQ (1-2) and contribute information to RQ (3-4) through a clinical trial

conducted with 30 parents of surgery patients at Lady Cilento Children’s Hospital. Parents were asked

to generate photographs of surgical site wounds over a 10-day period for detection of surgical site

infection (SSIs) by clinicians when they had returned home which will not be reported in this thesis.

The trial was feasible for providers with 95% of the 107 images able to be interpretable for SSIs and

parents considered the data collection easy with a 15-minute training session. The pretest-posttest survey

data submitted by parents was analysed for possible differences in engagement states with all

participants demonstrating engagement when defined as any physiological, cognitive, emotional or

behavioural change. Identification of a thought or feeling with a two-point difference between survey 1

and was considered relevant and discussed in interviews where parents could act as key informants to

the researcher’s claims of differing engagement states.

Participants indicated new behaviours of taking images, sending the images to medical staff and the

absence of information seeking behaviour which was prevalent in Study 1. Additionally, parents widely

talked about the cognitive outcomes of increased responsibility and control when using patient generated

health data. Further to this, patients experienced the emotional outcomes of increased reassurance and

empowerment as self-confidence, health situation control, supported autonomy. Overall the process of

solicited PGHD increased service confidence (reliability) and service satisfaction.

Patient Generated Health Data Use

Study 2 added to the 7 use attributes and 1 thematic consequence to the comprehensive schema of patient

generated health attributes now suggesting PGHD instigates 31 use attributes and 11 thematic

 

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consequences of engagement as shown in Figure 5.2. Despite the initial classification as physiological,

cognitive, emotional and behavioural many concepts overlap and hence strict categorisation is not

possible, although this thesis attempts to categorise them based on the main associated outcome.

Figure 5.2 A comprehensive schema of PGHD use for patient engagement (B)

Patient Generated Health Data Value

Finally, axial and selective coding and thematic analysis was applied to semi-structured interviews to

explore and confirm the experiential value of patient generated health data, engagement and

empowerment constructs. Results show that all a priori literature constructs were present and data

 

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suggested Efficiency Value as an emergent construct. Hence the final value for PGHD in order of most

discussed is Functional, Emotional, Self-determination, Efficiency and Transactional with Social Value

observed in only three of the 26 cases.

Knowing the value patients attribute to this facet of healthcare service allows better measurement in

practice. Currently healthcare value paradigms emphasise measurement “determined by the patient’s

medical condition, defined as an interrelated set of medical circumstances that are best addressed in an

integrated way” (Porter 2010, p.26). Clearly the value of PGHD goes beyond the functional determinants

of the medical condition and this research demonstrates the importance of emotional regulation

(emotional value), empowerment (self-determination value), service and experience optimisation

(efficiency value) and partnership with providers (transactional value).

Empowerment and self-determination were regularly discussed in Study 1, with supported autonomy,

increased health situation and system control expressed in Study 2 and was also supported by the

literature (Fumagalli, et al., 2014). Hence this thesis identifies empowerment may be instigated by

patient generated health data and patient engagement which could impact on credence services. These

concepts are explored in the next section of this chapter which analyses engagement and empowerment

across both studies.

5.7 Psychological Empowerment

Tan, et al. (2014) reported doctors suggested empowerment was a result of using patient generated health

data in clinical care and this research has confirmed this finding with patients and carers. Study 1

demonstrated patients used data to overcome service inadequacies and to ensure doctors took them more

seriously evidencing what Zimmerman (1995) articulated about psychological empowerment that

“beliefs that goals can be achieved, awareness about resources and factors that hinder or enhance one’s

efforts to achieve those goals, and efforts to fulfil the goals” (p.582). Given the importance of

empowerment in a traditional credence settings, parents in Study 2 were asked, “when you took or used

the medical images did you feel empowered? If yes, can you please describe it.”

As described by literature, psychological empowerment is contextual, composed of empowering

processes and empowered outcomes and involves redistribution of power through ‘control mutuality’

(Cho & Moya, 2016; Zimmerman, 1995). Just over half of the participants (15) in Study 2 felt

empowered by the process of collecting and appropriating PGHD in clinical care. Respondents

articulated that empowerment is characterised by an increase in interpersonal self-confidence, self-

advocacy and health situation control, interactional participation with providers and a sense that they

were given greater control in the health system through supported autonomy and increased

 

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responsibility. In effect, they were sharing ‘power’ with providers. Empowerment was a form of self-

determination with many participants recounting they were taken more seriously. In Study 1

psychological empowerment was a concept gained through interaction with peer networks when health

services were inaccessible, often ending in self-diagnosis, service optimisation or service switching.

“I think it gives confidence. I think it gives some feeling of autonomy. And I’m an argumentative

person. I have a healthy, critical view of the medical practitioner’s capacity as humans and as doctors.

I think sometimes they are wrong. And I think that gives me, for me, it gives me some strength in my

argument if I say this is not right here. There is something that I can point to and I can argue the point

that this is more serious than you believe. So, it allows control of the process.” Car01_F56_R

In Study 2 empowerment was experienced for the consumer within the health system, with providers

offering supported autonomy.

“Yeah, I think that still this with the proactive thing, you're actually doing something instead of

just you know looking at the scar and not knowing really how scar should heal. And I think you feel a

little bit empowered that you're not getting a response from someone who had the scar to say that it's so

terrible. So, I think you feel a little bit more empowered in just the feeling that it creates that you have

that back up. Apart from that feeling of being proactive, that you are doing something and then this

feeling of being sort of backed up by someone that knows about it.” Pat03_M33_I

5.8 Consumer Engagement and Psychological Empowerment

To understand the nature of the relationship between these two constructs and answer Research Question

4 “does involvement in resource creation and participative engagement in clinical care promote

empowerment? If so how?” parents who experienced both engagement and empowerment Study 2 were

asked “What is the relationship between engagement and empowerment in this context?” Answers

suggested that engagement leads to empowerment and the relationship is reciprocal.

“Yeah, I think they're tied with one another. If you're engaged with your health care system or

child or yourself you're engaged with that, then you're empowered to make important decisions also

with your medical staff.” Par16_F_Urban

“Yeah I think so because engagement is actually what gives you the empowerment so if you're

engaged in taking the photos it gives you that empowerment to ask for help or asking if something's not

right. To go and say something because you know that that wasn't there 12 hours ago. So, I think

definitely think, definitely it is really important. Engagement gives you that empowerment.”

Par08_F_Rural

 

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“I guess if you are more engaged in it you feel more empowered to do it and even vice versa. If

you feel empowered with his recovery or photos or whatever then you are more engaged to take part in

it.” Par20_F_Urban

Selective coding results show that participants who shared PGHD and engaged in facilitated

participation experienced at least one element of empowerment when composed of competence, self-

efficacy, health system control and health situation control. See Appendix M. Additionally, when no

data was created, or facilitation denied by clinicians, no empowerment was noted. Unsolicited data was

more likely to be used for improved health outcomes in the peer network than solicited data, which

offered patients an opportunity to experience the providers supported autonomy. However, these results

could also be due to participants in Study 1 seeking diagnosis, with Study 2 participants looking for

relatively minor post-operative complications. Interestingly when participants only created solicited data

or only created unsolicited data, the results were similar with consumers also only experiencing partial

empowerment. However, when healthcare consumers created both solicited and unsolicited data, and it

was facilitated by providers in co-creation, full empowerment was likely with consumers experiencing

all the identified constructs of competence, self-efficacy and control, suggesting it is a ‘sweet spot’ for

empowerment.

One participant, Par25_F_Urban, had “definitely not” collected data previously, engaging only in

solicited data, yet experienced full empowerment, suggesting disempowered people (in this context

empowerment is unsolicited PGHD use) may experience empowerment through resource creation and

participative engagement with clinicians. This tacitly answers the research questions asked by Leung

(2009), suggesting that resource generation and engagement can cause empowerment for the

disempowered, however future research will need to quantitatively clarify this finding.

5.9 Empowerment in Credence Services

The information gathered through Study 1 and Study 2 indicates that patients are indeed seeking what

Bardes (2012) described as the physicians ‘prized autonomy’. Through patient generated health data use

healthcare consumers experience a sense of autonomy which is an empowering engagement process that

results in the empowered outcomes. The most common outcomes experienced by participants was an

increase in self-confidence for self-advocacy (self-efficacy), proactive responsibility for health

outcomes (competence) and health situation control (control). These findings adhere to current

conceptualisations of psychological empowerment (Bravo, et al., 2015), recognising it must also be

defined contextually (Cho & Moya, 2016; Zimmerman, 1995). Fundamentally though, providers and

clinicians need to realise that they are not totally giving up their autonomy and power enshrined in

 

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knowledge asymmetry of credence services adhering to the concept of ‘control mutuality’. Rather they

are being offered an opportunity to provide supported autonomy and to improve consumer self-

confidence through sharing responsibility and control for greater consumer empowerment.

Engagement and empowerment derived from PGHD are both separate processes. Engagement leads to

empowerment and the relationship may be reciprocal. Engagement and empowerment were

demonstrated across both studies and results show that empowerment is inextricably linked to increased

responsibility, self-advocacy, self-confidence and control over the health system and health situation as

suggested by psychological empowerment literature. Partial empowerment can be enacted through

involvement in creating PGHD and participative activities with providers, however when data is both

solicited and unsolicited and providers offer supported autonomy, full empowerment is more likely to

occur. Hence this thesis suggests a model in Figure 5.3 which will be refined in the discussion.

Figure 5.3 A model to understand how co-creation engagement affects credence services

 

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6.0 DISCUSSION

6.1 Introduction

This research takes the consumer perspective, acknowledging that co-creation occurs in a network of

stakeholders, processes and resources. Value is determined by the consumer, facilitated by the provider

in direct interaction, although all participants in the network can benefit recipients. Importantly when

the firm facilitates value it is a co-creator and may become a value recipient (Grönroos, 2011; Grönroos

& Voima, 2013). Value can be co-created or co-destroyed through the integration resources by any

stakeholder (Robertson, et al., 2014) and value co-destruction will impact on system wellbeing (Smith,

2013) and on patient engagement.

This thesis employed value co-creation, credence situations, self-service technology and patient

engagement literature to understand a new phenomenon in healthcare: patient generated health data. A

multi stakeholder perspective of patient, carer and medical professional was included after calls from

Gummesson and Mele (2010) to construct co-creation research as more representative of ‘real life’.

Patient generated health data as a consumer resource had an effect on patient engagement, which in turn

promoted patient empowerment. It is characterised by differing levels of participation with the doctor,

involvement in their own healthcare and peer network and can be evidenced by physiological, cognitive,

emotional and behavioural outcomes. As such this thesis answers the overarching question: How does

the use of patient generated health data influence patient engagement in the context of credence

services?

Engagement and related terms required clarification in the patient generated health data context. Using

consumer engagement theory (Brodie, et al., 2011; Vivek, et al., 2012) and the healthcare services

literature (Fumagalli, et al., 2014) patient engagement, participation and involvement were defined as

an emergent state of the patient that occurs within a dynamic service process between the patient, the

healthcare system, the patient’s network and the use of patient generated health data. Engagement is

characterised by a patient’s intrapersonal and interpersonal self-involvement in activities determined by

themselves and their peer network and interpersonal participation in activities co-created with individual

providers in the healthcare system. Patient engagement is most effectively evaluated through the

relevant physiological, cognitive, emotional, and behavioural outcomes as an end state, although this

will be dynamically influenced by the service process over time.

 

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This research explored how patient generated health data influenced patient engagement through

qualitative interviews and a mixed methods trial at Lady Cilento Children’s Hospital. To address several

gaps in the literature this thesis emphasised the perspective of the healthcare consumer and developed

an ontological framework to measure engagement. The research evidencing examples of the emotional

outcomes of engagement, notably reassurance and empowerment, which were under researched in

extant literature. This thesis determined the experiential value of the data and explored the effect of

engagement on the process and end state of patient empowerment answering the following four research

questions:

Research Question 1: How is patient generated data used and how does it influence patient engagement?

Research Question 2: What is the experiential value of patient generated health data in healthcare

services for a patient and how does it reflect the five domains of functional, transactional, social,

emotional and self-determination value?

Research Question 3: How does patient generated health data use influence co-creation in credence

services?

Research Question 4: Does involvement in resource creation and participative engagement in clinical

care promote patient empowerment? If so how?

Traditionally healthcare was a place of ‘doctor-knows-best’ where information asymmetry enshrined

the doctor as all-powerful and the patient as a passive recipient. This information asymmetry was a

hallmark of credence services (Darby & Karni, 1973) however credence services themselves are

fundamentally challenged through the introduction of consumer resources into health care services.

Patient generated health data was previously defined any clinically relevant data, collected by a patient

outside the clinical care setting and a unique feature of the data is that consumers collect and control its

use (Shapiro, 2012). However this research demonstrated that carers, parents and other members of the

multi stakeholder network are indeed capable of producing data and therefore consumer-generated data

would be a more appropriate term for the phenomena.

The emphasis on the clinical outcomes of PGHD have obscured notions of engagement beyond the

physiological. PGHD use is not just pathophysiological (Kaplan, Greenfield, & Ware, 1989), it

incorporates a significant emotional component that has not been explored in contemporary healthcare

literature. PGHD is about radical change in medicine, caused by the shift of the patient role from passive

recipient to active consumer (Tinetti, et al., 2016). This research clearly demonstrates that PGHD

produces emotional engagement and this is critical for patients. The benefit for healthcare providers is

 

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that through the implementation of electronic medical records, data capture will extend the value of the

service beyond the interaction and extend the emotional engagement beyond frontline face-to-face

interactions (Deering, 2013). This can over-come resource limitations that lead to a lack of personalised

care in current health services (Lewis & Sanderson, 2011). Through e-visits providers can reinstate the

notion of the ‘family doctor’ or the ‘doctor for life’ lamented by participants, challenging health

consumers assertions that healthcare is dehumanising and disempowering.

Further to this engagement is not a binary process occurring within a service dyad over time (Pinho, et

al., 2014). Engagement is a multi-directional within the multi stakeholder framework with engagement

processes occurring between peer members affect engagement in clinical care, and vice versa. Providers

need to approach engagement considering the widest possible peer network. To practically facilitate

this, social tools allowing multi directional conversations will aid supported autonomy engagement and

introduce a mechanism for increased consumer management (Ouschan, Sweeney, & Johnson, 2000).

Lastly it is critical for providers to negotiate with consumers on data quality, which can easily be done

through consumer education.

This research demonstrates that PGHD can engage and empower patients, something that had

predominantly been speculated, but not empirically examined. PGHD offers providers an opportunity

to co-create with consumers characterised as the sharing control, responsibility and service optimisation.

Importantly managers must develop strategies to promote solicited and unsolicited data use as it is the

‘sweet spot’ for optimal engagement and empowerment. In addition to the research questions this thesis

calls for a paradigm shift to promote patient empowerment as a critical concept. In doing this, providers

can include consumers in their value creating processes, and encourage patients to perform more roles

as partial employees. (Boland, 2007) suggested “patients are the most underutilised resources in

healthcare” (p.126), and this thesis demonstrates that offering patients an opportunity to become true

partners in healthcare as a partial employee improves their service experience and confidence in the

service, and has the potential to reduce the cost of health meeting the tripartite aim of better care through

emotional reassurance, better health through improved health outcomes and cheaper healthcare services

through service optimisation.

6.2 (RQ1) How is patient generated data used and how does it affect patient engagement?

Existing literature recommended PGHD was used for physiological outcomes in rheumatology for

transient rashes (Armstrong, 2004); dermatology for skin conditions (Boyce, et al., 2011; Frühauf, et al.,

2012); maxillo-facial surgery documentation (Pourdanesh, et al., 2012), diabetes self-management

(Heintzman & Kleinberg, 2016); and wound management (Michiels, et al., 2016). Most papers

emphasised the providers’ perspective and the use of the data for improved health outcomes. While

patients are also value recipients of this outcome, their perspective was under-represented. The few

 

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studies that did report on PGHD related engagement for patients suggested cognitive outcomes such as

quality of life (Frühauf et al. 2012), emotional outcomes such as empowerment (Tan et al. 2014), and

behavioural outcomes such as increased likelihood of completing yearly tests (McClellan et al. 2016).

Through Study 1 and Study 2 the perspective of the consumer was foregrounded, specifically exploring

the physiological, cognitive, emotional and behavioural outcomes of PGHD related engagement.

For the patient, carer and parent, physiological, cognitive, emotional and behavioural outcomes of

engagement were present, with a strong emphasis on the emotional outcomes of PGHD related

engagement. Healthcare consumers used data for increased emotional reassurance that the healing was

happening the way it was supposed to, for a reduction in anxiety related to the condition, entertainment

with family and peers, altruistically for the benefit of society, to improve self-confidence when caring

and advocating for themselves and others, and for health situation and health system control when

healthcare was disempowering and dehumanising, promoting empowerment.

Patients also noted cognitive outcomes derived through the data being considered objective evidence

that overcame an inability to describe a condition, sense-making of a health journey and an increased

sense of personal responsibility for healthcare outcomes. Carers suggested the data was going to be used

for memory-making, kept as mementos for adolescent children, and with patients documenting their

bodies before and after medical interventions as an act of both vanity and the documentation of

survivorship. Additionally, data increased health awareness and reminded patients of health-related

behaviours, however there was no evidence it alone changed behaviour. Finally trust for the clinician,

satisfaction with the service and service confidence or reliability were all considered cognitive outcomes

of the use of PGHD in clinical care, however consumers did acknowledge trust was influenced by more

than just using the data in clinical care. Indeed patients thought using the data may signal an increase in

their trustworthiness, and equate to more respect from the clinician in the service interaction.

Lastly intrapersonal and interpersonal behaviours of participation with providers and involvement in

peer networks created opportunities for self-monitoring, self-education and self-diagnosis to improve

health outcomes. Data exchange with peers led to information seeking in Study 1, but not Study 2 and

the evidentiary nature of data increased consumer self-advocacy with clinicians, instigated co-creation

between consumers and providers, improved communication and gave the provider an opportunity to

offer parents support by distance through a concept called supported autonomy, extending the value of

the service beyond the hospital experience. Patients and carers experienced a greater ability to manage

their own resources effectively, and potentially reduce their resource footprint in healthcare services,

but it was also anecdotally suggested data could perpetuate deviant behaviours where patients pushed

for services doctors refused to offer.

 

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Hence patient generated data used is for Improved Health Outcomes, Self-perception, Service

Assessment, Emotional Regulation, Emotional Buoyancy, Empowerment, Social Support, Partnership

with Providers and Service Optimisation. These can be loosely categorised into physiological, cognitive,

emotional and behavioural outcomes of patient engagement. Importantly this thesis confirms and

explains the importance of the emotional outcomes of engagement that had previously only been

speculated by providers as empowerment (Tan et al. 2014). However, it should be recognised that these

constructs overlap and some may be categorised into more than one area although each separate theme

clearly defined in the next few pages.

Theme: Improved Health Outcomes (Physiological)

In conjunction with existing clinical care, PGHD is used for the ongoing-treatment and medical research

for current patients or to improve practices, treatments and ultimately health outcomes of future patients.

Theme: Self-Perception (Cognitive)

PGHD provides evidence of a healthcare consumer’s clinical condition, especially in circumstances

where patient observation is considered unreliable or inaccurate by providers. For consumers it aids

sense-making of a healthcare journey, increases a sense of personal responsibility for healthcare

outcomes and serves as a tool to create memories.

Theme: Service Assessment (Cognitive)

The use of PGHD in clinical care is a cue for service assessment pertaining to satisfaction of the use of

data, improved service confidence when the data aids understanding of the healing process leading to

increased trust with providers and increased mutual respect.

Theme: Preventative Mind-set (Cognitive)

The collection and use of PGHD increases health consumers’ awareness of their own condition and

serves as a reminder about behaviours which will impact on their health.

Theme: Emotional Regulation (Emotional)

The collection and use of PGHD increases health consumers reassurance that healing is occurring.

Conversely is can instigate or increase anxiety when diagnosis is inconclusive, contradicted or when

patients are highly anxious about their healthcare journey.

 

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Theme: Emotional Buoyancy (Emotional)

In order to make light of their situation, healthcare consumers used the graphic nature of PGHD to shock

members of their peer network and altruistically shared data for research purposes to improve the lives

of other patients and the community.

Theme: Empowerment (Emotional)

Due to its evidentiary nature PGHD increases a healthcare consumer’s ability to self-advocate providing

a mechanism by which they can negotiate with providers regarding health services. This increases self-

confidence in healthcare management, providing consumers with health situation and health system

control characterised as psychological empowerment.

Theme: Self-Management of a Health Condition (Behavioural)

PGHD aids healthcare consumers to self-monitor of existing conditions, self-educate and self-diagnose

through information available outside of clinical care.

Theme: Social Support (Behavioural)

Patient generated health data collection and use can be a social activity with data shared within the peer

network to update on a clinical condition or to seek crowd-sourced advice in an effort to achieve social

support, especially when this is absent in healthcare services.

Theme: Partnership with Providers (Behavioural)

When used with providers in clinical care, PGHD improves communication overcoming and inability

to describe a condition, provides consumers with a feeling of support, allowing them to act with some

autonomy encouraging mutual respect the co-creation of value in healthcare services.

Theme: Service & Experience Optimisation (Behavioural)

Due to increases in empowerment, PGHD aids consumers’ ability to optimise their service experience

through better resource management. However a possible effect of PGHD is that consumers will

demonstrate deviant behaviours negotiating for services they do not need, asking for diagnosis for

someone not present or providing false information.

 

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6.3 (RQ2) What is the experiential value of patient generated health data in healthcare services

for a patient and how does it reflect the five domains of functional, transactional, social,

emotional and self-determination value?

The experiential value of patient generated health data for the patient not only reflected the five domains

of functional, transactional, social, and emotional and self-determination value, but also a sixth emergent

category of efficiency value.

Functional Value was the most recognised value determined by the functional consequences of a

service like diagnosis and treatment results (Chahal & Kumari, 2012) and other psychosocial

consequences like convenience and control (Zainuddin, et al., 2011). In this research, Functional Value

was defined by improved health outcomes and a preventative mind-set. In addition, self-management in

the pursuit of better diagnosis and management could also be considered to reside in this domain. This

value domain is interrelated with all other experiential value constructs. Chahal and Kumari (2012)

conceptualise customer perceived value as a multidimensional concept with transaction value being

“psychological satisfaction or pleasure gained from a deal or transaction or during the service delivery”

(p.170). The term is not widely expressed as transactional value in the healthcare value literature, but

has been described as professionalism (Teke, et al., 2012) and quality of care (Dodds, et al., 2014)

including concepts like partnership, empowering knowledge and expertise, education and co-learning,

support, empathy, caring and congruence. This thesis considers consumers working in partnership with

providers as the basis for Transactional Value. Results show partnership where both parties contribute

to better communication, value co-creation, respect and supported autonomy. Further to this when

patients experienced Transactional Value assessment of this could be made through assessment of

satisfaction, trust and confidence.

Social value was conceptualised early in the value literature as arising when “situational factors, such

as an illness or some specific social situation, moderate the perceived value-outcome process” (Sweeney

& Soutar, 2001, p. 208) and more recently in health value literature as “promote empowerment and self-

responsibility due to the ‘patient-centred’ nature of the CAM therapeutic relationship” (Dodds, et al.,

2014, p. 220). However, this research conceptualises it as a terminal experiential value such as social

interaction (Chahal & Kumari, 2011) and knowledge management (Nambisan & Nambisan, 2009).

Social Value was important when patients needed social support to manage their condition. This value

was prevalent in Study 1, and substantially minimised in Study 2. This result is attributed to the fact that

patients already had a diagnosis in Study 2 and did not required peer support while looking for a

diagnosis as was noted many times in Study 1. In addition, consumers experienced providers supported

 

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autonomy in Study 2, hence the peer networks used to overcome service limitations in Study 1 were not

relevant. An interpretation of this could be that when patients receive the care needed from the provider,

the need to socialise medical diagnosis is not apparent.

The literature review in this thesis showed that the emotional outcomes attributed to Emotional Value

were under researched in the PGHD literature. This thesis evidenced consumers’ experience of

emotional regulation, balancing reassurance and anxiety, and emotional buoyancy which includes using

data for entertainment and for altruistic desires. Anxiety and reassurance were experienced by both

patients and carers, and acknowledged by clinicians. While emotional buoyancy is not the primary

motivation for using the data, it was a consequence of having the data and trying to make light of a

situation, a concept not covered in other known literature.

Additionally, consumers experienced the emergent construct of Self-determination Value enabling an

ability to integrate their personal beliefs into the healthcare service. Fundamentally self-determination

is about self-perception through evidence, sense-making, responsibility, self-advocacy and gaining

control, which is critical to the experience of empowerment (Aujoulat, Young, & Salmon, 2012; Bravo,

et al., 2015; Prigge, et al., 2015).

Finally, patients derived Efficiency Value when using the data to optimise the service experience. Dodds

et al (2014) considered this value for money, however the concept is broader encompassing financial

and time-saving measures for patients. Consumers recognised the benefits for remote patients, reducing

the distress children felt through medicalisation, which suggested the intervention means a cheaper

health system, greater consumer convenience and time with family.

Importantly use attributes, the resulting consequential themes and experiential values overlapped.

Analysis of Study 2 interviews suggested patients interchangeably mix individual elements between the

three layers of use attribute and value, and no strict categorisation of engagement outcome categories is

therefore possible. Instead, this thesis proposes a patient-centric model of three levels with results toward

the edge considered more abstract entitled Comprehensive Schema of PGHD Use Attributes, Thematic

Consequences and Experiential Values in Figure 6.1.

 

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Figure 6.1 Comprehensive schema of PGHD use attributes, consequences and experiential values

Confirmation of Actor Disposition and the Institutional Logic for Value Co-creation

Actor disposition and the institutional logic of the service ecosystem are critical to engagement as an

end state and providers can encourage engagement through the situational conditions. Hence, this

research suggests the following translation of drivers of Jaakkola and Alexander (2014) CEBs for this

context to describe the facilitation behaviours of clinicians. Importantly focal customer-related

ownership was originally a functional value, but with the emergent construct of efficiency value has

been redefined by this concept. Each driver is associated with one experiential value of PGHD

 

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suggesting the validity of value the actor disposition and the institutional logic required to achieve it as

shown in Table 6.1.

Table 6.1 Drivers of Customer Value through the Co-creation Process

Driver Consumer-led Engagement Provider Facilitation Experiential Value

Focal firm-related access

Patients use data to seek more access to healthcare services

Providers allow / solicit data to be used in the clinical care

Functional Value

Ceding Control Patients use data to seek self-determination within the healthcare

Providers use data / solicit data in the clinical care to understand patient perspective

Self-determination Value

Focal customer-related ownership

Patients owns their own data, increases situation and service system control

Providers include / solicit data in medical record or provide patient portal

Emotional Value

Need for improvement

Patients use data to overcome service limitation

Providers use / solicit data to overcome individual clinicians and health system limitations

Efficiency Value

Relationship and Communication

Patients use data to improve communication and relationship with clinician

Providers use / solicit data as a focal point within clinical consultations

Transactional Value

Other stakeholder-related support

Patients will use the data to seek social support

Providers use / solicit data with carers defining limitations of data usefulness

Social Value

6.4 (RQ 3/4): How does patient generated health data use affect co-creation in credence services?

Does involvement in resource creation and participative engagement in clinical care promote

patient empowerment? If so how?

The information gathered through Study 1 and Study 2 indicates that patients experience empowerment

when using patient generated health data. They experience it either through partial or full autonomy,

with providers as a form of supported autonomy or without providers utilising peer networks all for

improved health outcomes and emotional regulation. Involved engagement and participative

engagement are the empowering process that results in the empowered outcomes of increased self-

confidence in self-advocacy (self-efficacy), proactive responsibility for health outcomes (competence)

and health situation and health system control (control) adhering to current conceptualisations of

psychological empowerment, recognising it must also be defined contextually (Bravo et al. 2015; Cho

et al. 2016; Zimmerman 1995). Hence this thesis suggested an engagement-empowerment model which

requires testing in further research and addresses the overarching theoretical framework.

 

 

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6.5 Resolution of the Overarching Theoretical Framework

A theoretical framework was developed for this research that responds to Mele and Russo Spena (2010)

research agenda to deepen our understanding of the antecedents and implications of resource integration.

The model incorporated a process view of value co-creation (Payne & Storbacka, 2008) aligned with

previous research of a provider-led patient engagement process, a credence situation encounter process

and a patient assessment process. Importantly it incorporated consumer, provider and relational factors

identified as important in credence situations literature and adoption and use factors from the technology

literature (see Figure 6.2).

Figure 6.2 Literature Informed Overarching Theoretical Framework

From the data, 305 codes were identified and categorised into themes, which were then iterated into the

11 parts: Information, Activation, Collaboration, Resource Collection, Resource Integration, Resource

Engagement, Resource Characteristics, Interpersonal Assessment, Service Assessment, Consumer

Heterogeneity and Contextual Factors (see Appendix E). This approach was taken to ensure new

constructs about the phenomena were not restricted or omitted by a preconceived schema. After a

thematic analysis of Studies 1 and 2, analysis of the data, a revised model of engagement and a

description of the elements are shown in Figure 6.3, showing the critical relationship to empowerment.

 

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Before Resource Integration

Patient generated health data can be solicited or unsolicited, although patients may not collect data unless

prompted (Shapiro, 2012) and will only experience the four demonstrated constructs of empowerment

when collecting both types. Collecting data is easy with smartphone technology, but difficult for

clinicians to manage and store (Archer, et al., 2013). PGHD is considered a right by patients and

unsolicited data documents something of concern to the health care consumer (Marquard, et al., 2013;

Sujansky & Kunz, 2015). Providers acknowledge unsolicited data is useful, but can be a challenge to

implement into an electronic medical record and may not attract financial compensation. Benefits of the

data are that it is created in the comfort of the patients’ home and is potentially more time accurate,

reducing the risk of recall bias. Furthermore, when patients’ collect data is both solicited and unsolicited,

they are more likely to experience psychological empowerment, however this is conditional on both

clinician support and patients’ demonstrating autonomy.

During Resource Integration

When resources are integrated into clinical care co-creation and co-destruction are possible and can be

enacted by both providers and consumers (Robertson, et al., 2014). Consumers co-create by sharing

PGHD with clinicians and engaging in participative behaviours, however co-destruction is also possible

when patients exhibit deviant behaviours such as asking for a diagnosis for someone not present or

insisting their data has absolute authority. When providers cause co-destruction through denying patient

resources the evidence in this thesis suggests no empowerment will occur. When they support the patient

by using the data or educating the healthcare consumer on how to collect data empowerment is possible.

As support for the use of the data is required for empowerment, and the degree of support provided

determines may determine the magnitude of empowerment, this research recommends support is both a

moderator and mediator in the relationship between the data and empowerment. Similarly, the evidence

in this thesis recommends that patient autonomy is required to collect unsolicited data and experience

the full effect of empowerment. As such this research suggests health consumer autonomy will also be

a mediator and moderator of empowerment.

After Resource Integration

The collection and use of solicited and unsolicited PGHD is an empowering engagement process that

results in the empowered outcomes of increased self-confidence in self-advocacy (self-efficacy),

proactive responsibility for health outcomes (competence) and health situation and health system control

(control) (Bravo et al. 2015; Cho et al. 2016; Zimmerman 1995). The evidence in this thesis suggests

empowerment could be an outcome and a dependant variable of this engagement process, hence it is

included as an outcome in the model. Finally, this thesis demonstrates that engagement influences

service satisfaction and service confidence. Hence after a thematic analysis of Studies 1 and 2 a revised

 

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model of engagement are shown in Figure 6.3 and while arrows indicate possible relationships, future

research would need to test these quantitatively.

Figure 6.3: Research Informed Theoretical Framework

6.6 PGHD as a Mechanism for Service Assessment

This research demonstrated that healthcare consumers switch providers when their operand and operant

resources are disregarded by the provider. The current research suggests patient generated health data is

accepted by clinicians; however the 75% of doctors who used the data in a clinical assessment reported

it did not impact on their clinical decision making with 25% not using the data at all (Nundy, et al.,

2014a). Tan, et al. (2014) found the same results with another small study population, suggesting that

somewhere between 10-25% of providers will not use patient generated health data in clinical care. This

thesis noted that one of the 11 doctors interviewed was not willing to accept patient generated

photographs, however would accept information gathered by the patient through Dr, Google. In this

situation marketing professionals have an opportunity to provide assistance through internal marketing

of PGHD to healthcare professionals who are reluctant to adopt it due to scepticism of use and value

(Chung et al. 2015). This thesis suggests that incorporating PGHD as part of patient-led service will

reduce dissatisfaction, decrease provider switching and could provide competitive advantage. Allowing

patients to generate data influenced parents’ perceptions about when the service ended promoting greater

service confidence (reliability) and ultimately satisfaction. Additionally the emotional outcomes of

engagement have been understated in preference for physiological improvement within the healthcare

context.

 

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6.7 Recommendations for Measuring Engagement in this Context

Like all services, healthcare uses Service Dominant Logic and value as a basis for service evaluation.

Despite consistently advocating for consumer derived value assessments often value is just code for

‘saving money’ (Porter, 2010). In this study, the value of patient generated health data was informed by

literature and explored through 49 interviews with consumers determining Functional, Emotional,

Transactional, Self-determination, Efficiency and Social Value. Hence when measuring the value of

patient generated health data in clinical care the physiological outcomes (functional value), as described

by Porter (2010), need to be considered alongside Emotional Regulation (emotional value),

Empowerment (transactional and self-determination value) and quality of life when accessing health

services (efficiency value).

6.8 A Framework for Integrating PGHD into Clinical Care for Managers

Information exchange is central to patient engagement and noting the importance of implementing

theory into practice, this thesis builds on the classification of engagement proposed by Grande et al.

(2014). The authors provide a classification of practical patient engagement based on information

exchange in figure 2.4 to include information, collaboration and activation. Importantly this thesis

demonstrated the value of education and participation, recognising that if providers refuse to accept

PGHD it impacts on wellbeing and health consumer engagement in both the service ecosystem and the

patients peer network. Hence, this research recommends the following framework which includes a

definition of provider role responsibilities based on the theory in this thesis.

Figure 6.5: A Framework for Integrating PGHD into Clinical Care for Managers

When PDGH is implemented into practice providers should explain the importance and limitations of

PGHD and train consumers to capture accurate, reliable solicited data in the format and quantity that is

clinically relevant. During clinical care providers should contain unsolicited and solicited data, using it

for engagement and clinical outcomes. Finally, providers should then maintain support to healthcare

consumers through the EMR beyond clinical care. This will promote improved physiological outcomes,

create emotional engagement through reassurance, cognitive engagement through increased,

responsibility and behavioural engagement through repeat data collection.

Explainthe value PGHD

Trainconsumers to capture data

Containdata & use in clinical care

Maintainsupport 

beyond care

 

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6.9 Contributions

These findings fill four main gaps. Firstly, they improve the perspective of the patient, largely absent in

current PGHD literature. Secondly, a comprehensive schema of attributes and thematic consequences

has been developed to show the extent of PGHD use in and outside of clinical care. Thirdly, they

demonstrate the six abstracted relativistic experiential values of patient generated health data, suggesting

that functional, emotional, efficacy, self-determination and transactional are the five most critical to

solicited patient engagement measurement. Social value of the data was only important when

overcoming service limitations and when the data was unsolicited. Lastly, this research confirms the

existence and importance of emotional outcomes of PGHD engagement, something only suggested by

providers in previous literature.

Patient generated health data affects co-creation in credence services via physiological, cognitive,

emotional and behavioural outcomes and it promotes engagement and potentially patient empowerment

(Fumagalli et al. 2014). Patient engagement in credence services is an important topic to consider as it

has “refocused attention on patient outcomes, even if efforts to ensure more consistently positive

outcomes sometimes reduce the physician’s prized autonomy” (Bardes, 2012, p. 782). This radical

change in medicine, caused by the shift of the patient role from passive recipient to active consumer

(Bragazzi, 2013; Hood & Weston, 2004) and the addition of technology has facilitated a new healthcare

paradigm, namely patient directed medicine (Tinetti, et al., 2016). Hence the implications of patient

engagement in credence services in relation to the providers’ autonomy and service viability are an

important managerial problem to consider.

Study 1 clearly demonstrated when engaged carers provided PGHD and the value was not facilitated, a

form of co-destruction occurred and consumers switched providers. If providers want to join consumers’

value creating processes they can utilise health networks for co-creation and they must create new

models of healthcare as the proactive e-patient revolution “cannot be adequately understood in terms of

our older medical constructs, including many still taught in medical school and reaffirmed in our

continued education. An attempt to view the experience of today’s e-patient through that cultural lens

of yesterday’s professionally centred clinicians are doomed to failure” (Ferguson, 2007, p. 21).

A way to address the problem of our current cultural lens is to refocus the doctor–patient relationship

through a services marketing and patient empowerment paradigm. The contributions in this thesis span

both healthcare and services marketing with theoretical and managerial implications (see Tables 6.2 and

6.3).

 

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Table 6.2 Theoretical contributions of this thesis Gap in the Literature Contribution

Authors have documented functional value (Chahal &

Kumari, 2012), transactional value (Lee & Lin, 2011),

social value (Dodds et al., 2014; Nambisan &

Nambisan, 2009; Teke et al., 2012) and emotional

value (Sweeney & Soutar, 2001; Zainuddin et al.,

2011) when measuring value in healthcare services.

Analysis of the literature suggests a fifth – the

emergent construct of self-determination value (Dodds

et al. 2014a; Lee & Lin, 2011) which also includes

self-advocacy for ethics, spirituality and personal

perspective within the healthcare service.

The analysis of experiential values of PGHD as

functional, emotional, transactional, self-

determination, social and efficiency value offers

insight into the consumers’ perspective of PGHD

and offers insight into how to measure value in this

context.

Leung et al. (2009) found that there was a significant

positive relationship between user-generated content

involvement and civic participation on the composite

dependant variable psychological empowerment,

however it “does not resolve the issue of whether

involvement in content generation online enhances

empowerment, or whether empowered individuals

choose to participate” (p.1344).

One participant had “definitely not” taken images

previously yet experienced full empowerment,

suggesting disempowered people (in this context

empowerment is unsolicited PGHD use) may

experience empowerment through engagement

and resource creation. This tacitly answers the

research questions asked by Leung et al. (2012),

suggesting that resource generation and

engagement can cause empowerment for the

disempowered.

Credence services suggest an information and power

asymmetry between producer and consumer, however

patient generated health data as a resource alters this

asymmetry. Through facilitating the patient value in

co-creation patient information and presumably power,

is promoted with physicians already acknowledging

the data reduces their power and responsibility (Sanger

2016). Given patient engagement is part of a wider

concept of patient empowerment (Fumagalli et al.,

2014) this thesis suspects patient generated health data

will affect engagement and empowerment in credence

services which are a direct challenge to the physician’s

prized autonomy (Bardes, 2012).

This thesis suggests a model composed of

engagement as the collection of solicited and

unsolicited data, mediated and / or moderated by

support and autonomy in participation with

providers on the composite dependant variable of

empowerment composed of increased

responsibility (competence), self-confidence

(self-efficacy) and increased health system and

health situation control (control) for testing in

further research (Figure 6.4).

 

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Table 6.3 Managerial contributions of this thesis Gap in the Literature Contribution

A comprehensive understanding of the uses of patient

generated health data from the perspective of the

healthcare consumer is unknown and “future research

would benefit from an ontological framework for

describing and measuring patient engagement” (Prey,

et al., 2014, p. 748).

Comprehensive schema of PGHD use attributes,

thematic consequences and experiential values

(Figure 6.1)

6.10 Limitations The limitations of this research are that the concepts expressed in this thesis have been explored

qualitatively and no confirmation of relationships is possible. Most interviews were not conducted face-

to-face and thus may have not obtained the same quality that could be expressed in person. In Study 2,

the family situation (single parent, working parent) was not recorded and that is a limitation of this

research. Additionally, the subjective nature of qualitative research does introduce the possibility of

researcher bias however the techniques of intercoder reliability, participant confirmation and research

questions grounded in literature mitigate this. Similarly, the results expressed may not offer theoretical

generalisability to other contexts as engagement and empowerment are contextually derived.

6.11 Future Research

Future research should quantitatively test the model in Figure 6.4 to examine relationships and suggest

the optimal empowerment strategy for patient generated health data. In addition, a randomised control

trial which assesses the health outcomes, the economic cost analysis of implementing a patient generated

health data service for all surgical patients and engagement should be considered. Future research should

consider the role of the partial employee on engagement, empowerment and service optimisation.

Additionally exploring the role of consumer-generated resources and deviant behaviour is an extension

of this research. Lastly, future research should focus on the development of co-destruction or non-

reciprocations of providers.

 

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APPENDIX A: Comprehensive Review Search Strategy

TI/AB = “Patient generated” OR “Veteran generated” OR “client generated” OR “consumer generated” OR “customer generated” OR “self generated” OR “patient initiated” OR “Veteran Initiated” OR “client initiated” OR “consumer initiated” OR “customer initiated” OR “self initiated” OR “patient recorded” OR “veteran recorded” OR “client recorded” OR “customer recorded” OR “consumer recorded” OR “self recorded” OR “patient documented” OR ”veteran documented” OR “client documented” OR “customer documented” OR “consumer documented” NOT TI/AB= “patient reported outcome measure*” AND TI/AB= “digital*” OR “comput*” OR “telemed*” OR “PC*” OR “macintosh” OR “mac” OR “laptop” OR ”lap-top” OR “iphone*” OR “ipad*” OR “iwatch” OR “online” OR “electronic*” OR “sensor*” OR “fitness” OR “tracker” OR “band” OR “garmin” OR “fitbit” OR “misfit” OR “jawbone” OR “moov” OR “Samsung” OR “microsoft” OR “Apple” OR “Google” OR “log” OR “diary” OR “ app “ OR “e-mail” OR “email” OR “electronic mail” OR “web” OR “interactive” OR “technolog*” OR “multimedia” OR “software” OR “application” OR “internet” OR “video” OR “photo*” OR “image*” OR “picture*” OR “social media*” OR “tablet” OR “palm-pilot” OR “palmpilot” OR “smartbook*” OR “smart-book*” OR “cellular phone*” OR “mobile phone*” OR “mobile telephone” OR “cellular telephone” OR “cell phone*” OR “cell telephone*” OR “smartphone*” OR “smart-phone*” OR “blackberry*” OR “black-berr*” OR “MMS” OR “SMS” OR “messag*” OR “facebook” OR “Youtube” OR “twitter” OR “Wechat” OR “Instagram” OR “FLIKR”

All terms were inputted into PubMed, Scopus, CINAHL (via EBSCOhost), Embase, Cochrane Library,

Medline (via EBSCOhost) and the Psych Info databases. Results were restricted to peer-reviewed

journals articles in English about human subjects. Titles and abstracts were screened for inclusion.

Hand-searching via Google Scholar and of the Journal of medical Internet Research 2010-current was

also conducted. See Prisma Flow Diagram on the next page for search results.

 

 

 

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Excluded Papers:

Articles that did not report on patient generated data

Articles using non-digital methodologies

White papers and non-peer reviewed

Patient reported outcomes measures (PROMs) or home-monitoring initiated or solicited by clinicians

Articles that focused on patient generated data used in online information exchange rather than for use in a clinical setting

Articles on patient initiated clinic visits, remote monitoring, telehealth, screening, interventions or reporting of outcomes without unsolicited patient generated data

Secure messaging was included as it could be initiated by the patient

 

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APPENDIX B: Foundational Premises (FP) of SD Logic

Source: Vargo, S. L. and R. F. Lusch (2008).

 

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APPENDIX C: Resource Integration in Credence Situations Literature

Categorisation: RF = Relational Factors, RR= Risk Reduction, QUAL = Quality Assessment, SAT = Satisfaction Assessment, VAL = Value Assessment, BI = Behavioural Intention

Authors/ Year

Theoretical Perspective & Methodology

Constructs of Investigation Categorisation

Results Consumer Resource Implementation

Parasuraman, A., et al. 1985

Grounded conceptual model development using interviews and focus groups

- QUAL, RF, RR

10 areas of importance to quality assessment: Reliability, Responsiveness, Competence, Access, Courtesy, Communication, Credibility, Security, Understanding, Tangibles

-

Alford, B. L. and D. L. Sherrell, 1996

Disconfirmation theory Video vignettes, 18-item questionnaire and SEM

Affective State, Provider Performance on Satisfaction and Repeat Purchase Intention

SAT, BI Disconfirmation theory is not significantly linked to SAT, BI. Thus credence quality is mostly assessed on the provider performance

-

Powpaka, S, 1996

Service classification, 20-item modified SERVPERF scale with outcome quality items. Analysed with SEM to determine GOF and to test hypothesis.

Service Performance, Outcome Quality

QUAL In credence situations outcome quality is not significant. Hence services are not homogenous and different services may have different process quality constructs as their significant determinants.

Emons, W, 1997

Economic modelling literature review, synthesis, developed of economic model without empirical assessment.

Market factors: sellers’ incentives of prices (current and entry), capacity and size of clientele and market factors of number of active experts, reputation by watchdogs

RR When services are ‘observable’ e.g. diagnosis and repair are separated and then capacity is observable (a well-used service) customers can use market factors information to reduce risk. When capacity and service are unobservable consumers must rely on trust.

Information is used pre-purchase to evaluate a service and reduce risk

Shemwell, D. J., et al. 1998

33-item scale SEM to test hypothesis.

Quality Assessment and Satisfaction on Complaint Behaviour, Affective Commitment, Continuance Commitment

SAT, RF, BI

Service quality has a strong direct effect on patient satisfaction and satisfaction mediates the effect of service quality on the outcome variables. Importantly satisfaction leads to highly significant affective commitment (strong feelings for the provider). In credence services this is critical. Satisfaction was found to be significantly related to reducing complaint behaviour.

-

 

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Cronin, J. J., et al. 2000

Extensive literature review comparing four models of service. 32 item measure and SEM to test hypothesis.

Sacrifice, Quality, Value Satisfaction, Behavioural Intention

BI Service quality, value and satisfaction all directly and significantly affect behavioural intentions. There is a strong perceived link between quality and value and the behavioural intention is strengthened and that when the indirect relationship of service quality is moderated by value and satisfaction and the indirect relationship of value moderated by satisfaction.

-

McColl-Kennedy, J. R. and E. F. Richard, Jr. 2001

Involvement concepts 16-item measure, EFA, CFA and multiple regression analysis

Involvement on External Search Experience

BI In general involvement did affect external search activities although it was industry specific and ambiguous as involvement had no effect on external search for life insurance services, however was significant for furnace repair services

Information used post-purchase to examine competitors for risk reduction

Mattila, A. S. and J. Wirtz, 2002

Subjective and objective knowledge, personal & impersonal sources of knowledge. 33-item measure tested through ordinary least square (OLS) analyses and regression.

Self-assessed knowledge and objective externally sourced knowledge on information search

RR Self-assessed knowledge is strongly linked to the consumer's use of personal sources of information, including internal memory searches and word-of-mouth communication. Conversely, objective knowledge seems to have a positive impact on the consumer's motivation to seek external information (e.g. newspaper articles, mass media sources) about the service provider.

Information is used pre-purchase to evaluate a service for risk reduction

Hsieh, Y.C. and S.T. Hiang, 2004

Service quality constructs in a 12-item measure using SEM to test hypothesis.

Employee interaction, the physical environment, and the outcome all on relationship quality

RF, SAT, QUAL

All three service quality factors have significant influences on trust and satisfaction of the relationship quality. Physical environment quality is more important in search services than in experience and credence services because potential buyers can evaluate this prior to the purchase. Therefore, although the outcome quality is still important in strengthening relationship quality, the interaction quality provided by employees has become a critical factor in credence services.

-

Yang, Z. and R. T. Peterson (2004).

Customer Loyalty 19- Item measure tested using EFA and GOF for model then multiple moderated regression

Customer loyalty, Switching costs on value and satisfaction.

VAL, SAT The moderating effects of switching costs on the association of customer loyalty and customer satisfaction and perceived value are significant only when the level of customer satisfaction or perceived value is above average

-

Sülzle, K. and A. Wambach 2005

Economic modelling, literature review, synthesis, model developed including insurance no empirical assessment

Degree of insurance on the amount of fraud in patient-physician relationship.

RR Consumers are more critical when they have to pay for services seeking second opinions. Second opinions involve waiting time and other costs that reduce likelihood of opinion being sought. Risk adverse people are likely to

Information used post-purchase to examine competitors for risk reduction

 

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weigh the costs of a second opinion more critically than non-risk averse and this is moderated by reimbursement amount from insurance companies.

Dulleck, U. & R. Kerschbamer, 2006

Economic modelling, literature review, synthesis and development of a unifying model of credence service for the basis of economic management

Assumptions: 1) Homogeneity 2) Commitment 3) Liability 4) Verifiability

RR A Game Tree for the Credence Goods Problems is developed with 6 interrelated tiers including: 1) Expert posts prices 2) Consumer decides whether to visit the expert or not 3) Nature determines severity of problem 4) Expert recommends (and charges if accepted) 5) Consumer accepts or rejects 6) Expert provides

-

Galetzka, M., et al. 2006

An experiment using a 2 (service validity: high vs low) x 2 (service reliability: high vs low) x 3 (service type: search vs experience vs credence) scenario design. 4-item measure analysed by AVOVA

Service validity and service reliability on satisfaction

SAT Service validity and service reliability independently affect customer satisfaction with search services. For credence services, no effects of service validity were found but the effects of service reliability on customers’ satisfaction was profound.

-

Pressey, A. D. and C. Howden, 2008

Credence services and grounded conceptual development using in-depth interviews.

Investigation of relationship value in credence services

RF 6 areas of importance in relationship value: 1) Agent Know-How 2)Trust 3)Personal interaction 4)Service fulfilment 5)Location 6)Direct and Indirect Costs

-

Garry, T. and T. Harwood 2009

Expert-novice relationships & Legal Service Literature review and grounded conceptual development using in-depth interviews.

Characteristics and determinants of client sophistication (e.g. expertise)

RF 6 key aspects of sophistication are: 1) Service evaluation criteria / quality assessment 2) Interdependency and power 3) The atmosphere in which solicitor-client 3) Joint goals 4) Trust 6) Extent of commitment

Information and Skill combined as Expertise used during interaction for service enhancement

Webster, C. &D. S. Sundaram 2009

Norton’s (1978) communicator measure tested using one-tailed Pearson product moment correlation and ANOVA

Provider’s communication style of affiliative (high and low) and dominance (high and low) on customer satisfaction

SAT Although a service provider’s communication style significantly relates to customer satisfaction, the relationship is moderated by service criticality and service nature. High affiliation and high dominance is more important for credence services.

-

Guenzi, P. and L. Georges (2010)

Banking services literature review and grounded conceptual development using in-depth interviews.

Investigation of drivers and consequences of trust

RF Drivers: 1) Customer orientation and Expertise positively affect trust 2) Selling orientation has a negative impact on it 3) Likeability does not influence customer trust Consequences: 1) Trust positively influences a customer’s intentions to re-buy/cross-buy and to recommend

-

 

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2)Decreases a customer’s intention to switch Lloyd, A. E. and S. T. K. Luk 2011

Service encounters and service quality. 8 item measures analysed using subject to EFA and CFA.

Interaction behaviours moderated by comfort and its effect on overall service quality and satisfaction as demonstrated by positive word-of-mouth

RF, QUAL, SAT, BI

The customer observes various behavioural cues displayed by employees in a service interaction and evaluates comfort. Therefore ensuring not only a good service outcome is essential but paying attention to the little things like gestures and behaviours also counts. In addition two main factors were found 1) Service manner and 2) Needs identification and these are instrumental in creating or destroying comfort.

-

Drennan, J. and L. Schuster (2013)

Model of Goal-Directed Behaviour (MGB)

An investigation of Consumer acceptance of technology-based self-service (TBSS)

BI MGB enhances our understanding of consumers’ acceptance of TBSS. Maintenance self-efficacy is important in the continued use of self-service technology when alternatives that achieve the same goal are presented.

Skill of Self-Service technology used post-purchase for service enhancement

Murti, A., et al. 2013

A literature review identified 8 areas of importance in patient satisfaction: 1)Tangibles 2)Reliability 3)Responsiveness 4)Assurance 5) Empathy 6)Discharge 7) Safety Measures 8) Medicine quality management and a 90-item measure was analysed using Bivariate correlations and regression

An examination and measurement of the quality of services and its outcomes (patient’s satisfaction and behavioural intentions).

QUAL, SAT, BI

The results establish the direct influence of service quality on behavioural intentions, and the mediating role of customer satisfaction on influencing behavioural intentions.

-

Pressey, A. and K. Mortimer 2013

Involvement, pre-purchase evaluation and search literature and questionnaire evaluated using independent samples t-test to test hypotheses regarding credence versus non credence services.

An investigation of involvement on levels and extent of information search and the information types sourced.

RR Involvement in the search process is high in terms of importance but not interest. Consumers of credence services do not undertake a more comprehensive information search than non-credence service purchasers in terms of the use of external sources of Information, however, they do depend more on the opinion of salespeople, the experience of friends and the content of consumer reports.

Information searching pre-purchase via opinion of salespeople, the experience of friends and the content of consumer reports is used for risk reduction.

Beise-Zee, R. and A. Ngamvichaikit 2014

Decision authority literature review and grounded conceptual development using in-depth interviews.

Customer Decision Authority moderated by persuasion knowledge and provider credibility on customer satisfaction

SAT, BI Decision authority Increases customer satisfaction. Customer persuasion knowledge and provider credibility together were found to moderate these effects. Provider communication behaviours should be assessed in further research

Customer Decision Authority assessed post purchase to enhance service interaction

 

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APPENDIX D: Study 1 Interview Schedule Sample (Patient Only)

The impact of PGHD on patient engagement and the doctor-patient relationship

STUDY AIMS:

1. Identify perceptions about how patient generated health data is used and why it is / is not useful, including how the patients want the data to be used.

2. Identify the motivators and inhibitors for the adoption of patient generated health data in clinical care for the patient.

3. Identify the value and value cocreation benefit of patient generated health data for the patient. 4. Identify the best method of photography (doctor-taken or medial selfies) that leads to patient

engagement, by identifying how photography affects participation in the doctor-patient interaction and the patient’s involvement in their own healthcare process.

5. Identify any opinions about the future of patient generated health data. 6. Identify any opinions about the future of the personally controlled electronic health record 7. Identify if the patient has ever taken or used PGHD in clinical care

INCLUSION CRITERIA:

Patients will be required to be familiar with a medical condition that requires photography such as skin moles, diabetic wounds or transient rashes, they will need to own a smart phone and have taken a photograph using that smart phone in the last year.

PROCESS:

A. THANK PARTICIPANT FOR THEIR TIME (PHONE INTERVIEWS) Hi, this is [Kara Burns] from the Queensland University of Technology. May I please speak with [participant name]?

[If no] Will [the participant] be available on this number at another time? [Record response] I will call again then. Thank you for your time. Goodbye. [End call]

[If yes, continue]

Hi [participant’s name; introduce own name]. I’m calling from the Queensland University of Technology. I am calling regarding the interview for the research project on your opinions about patient generated health data? [If yes, continue]

[If no] Will you be available on this number at another time? [Record response] I will call again then. Thank you for your time. Goodbye. [End call]

Have you received the information letter and consent form? [If yes, continue]

[If no] I am sorry to hear that. Would you like to continue with this interview or shall we reschedule so you can read through the material?

[Reschedule] Can I first confirm your email address again? [check with records] Thank you. I will send you a new information package about the study. For the interview, the researchers will be conducting interviews after the 1st of June. Would this be convenient for you?

 

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[If no] Unfortunately those are the only days we will be conducting interviews at the moment. However, if any more sessions are scheduled, would you like me to contact you to see if one may be convenient for you? [If yes, record this]. Thank you very much for your time. Goodbye. [end call]

[If yes] Excellent. What day would be most convenient for you? [Record day]. And what time would be most convenient for you? [Record time]. Thanks [participant’s name]. Your interview is rescheduled for [date/time]. I will send you through a new information package. Thank you very much for your time. Goodbye [end call]

Continue Interview

[Move to section C] B. THANK PARTICIPANT FOR THEIR TIME (For all other interviews) We have come together today to discuss your opinions, experiences and feelings about patient generated health data. There are no right or wrong answers to the questions we’ll discuss. I’m simply interested in your opinions and experiences. This discussion is a totally confidential conversation. Any information I record and demographic information will not be kept by the Queensland University of Technology, and summary reports will not identify you in any way.

[Move to section C] C. EXPLAIN THE PROCESS OF THE INTERVIEW Today’s process involves me reading out two short scenarios and then us having a conversation to discuss your opinions, experiences and feelings about patient generated health data. To explain patient generated health data is any clinically relevant data a patient creates about himself or herself that can be used in healthcare. The data can be numbers, words or images for example a photo of a skin lesion. Today we are focusing on the visual form; a phenomenon I have called ‘medical selfies’.

I expect the complete process to take approximately 30 minutes. I would like to audio record today’s session, so that it can be transcribed for analysis purposes. When we have completed the study, a copy of the summary report will be made available to all participants.

It is also part University’s requirements that you complete the consent form. The document outlines that the research team will respect your confidentiality and that any information discussed here today will not be used to personally identify you in any publications or conference discussions.

Do you have any questions before we start? [Answer any] Ok I will start the interview now and switch on the recording device.

[Start audio recording]

D. OPENING DISCUSSION Aim: Introduction question to get the participant relaxed

Firstly thank you very much for participating in this study. To begin with can you let me know how you heard about the study and why you decided to participate?

E. READ SCENARIO 1 I am now going to read you Scenario 1 and ask a series of question that relate to it. Please answer the question based on the scenario.

The Scenario 1  

Tanya wakes up at 3am and is feeling stressed worrying about an assignment that is due for 

university. Whilst going to the bathroom, the patient notices an extensive rash covering her face and 

 

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neck. Tanya has experienced a mild form of the rash twice since moving to Brisbane, although it has 

never been this red, or hot, and it has always disappeared within a few hours. The patient quickly 

gets her mobile phone, takes a ‘medical selfie’ and then goes back to bed concerned. In the morning 

the rash has gone, but feeling a bit anxious Tanya decides to see a doctor. In preparation for the 

consultation the patient looks on the internet at various rashes and collates all information that 

might be useful. Tanya notes that her mother is allergic to seafood which can cause a rash and she 

ate seafood for dinner the previous night. Tanya’s Dad has a skin condition that looks like a rash. The 

house the patient is living in has a problem with mould, which has also been known to cause rashes. 

Tanya wants to get advice from her family and decides to share the images with her mother via a 

multi‐media message (MMS) and posts them on social media to a sister. Tanya then takes the 

photographs to a doctor and they discuss the condition.  

INTERVIEW QUESTIONS

Aim: Identify the perceptions about how patient generated health data is used and why they are / are not useful, including how the patients want the data to be used

Q1. Thinking about Scenario 1, do you think the photographs in this scenario useful? Why?

[If yes] Probing: How do you think the photographs in this scenario can be used?

[If no] Probing: Can you please explain why they are not useful?

Q2. In this scenario how do you want the photographs to be used by the doctor?

Aim: Identify the motivators and inhibitors for the adoption of patient generated health data in clinical care for the patient and carer

Imagine you are in this scenario. Q3. What do you think would motivate you to take the images? Q4. Is there anything that would stop you from taking the images?

Aim: Identify the value and value co-creation benefit of patient generated health data for the patient and carer.

Q5. Do you think the photographs are valuable in this scenario? Probing: Why?

Q6. Do you think the photographs have value beyond diagnosis? Probing: Why?

Q7. Do you think the photographs have value outside of the clinical consultation? Why?

Aim: Identify the best method of photography (doctor-taken or medial selfies) that leads to patient engagement, by identifying how patient generated health data affects participation in the doctor-patient interaction and how patient generated health data affects patients’ involvement in their own healthcare process.

Q8. How do you think the photographs will affect the relationship between the patient and the doctor? [If required] Prompt: For example do you think it will effect communication or trust? Q9. How do you think the photographs will affect the involvement in the patient’s own healthcare process?

 

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[If required] Prompt: For example do you think it will affect the patient’s ability to remember the rash or anything else related to their condition?

Aim: Identify the opinion about the future of patient generated health data

Q10. What do you think will happen with patient generated health data in the future? Probing: Why?

Aim: Identify the opinion about the future of the personally controlled electronic health record

Q11. Have you ever used the Australian governments personally controlled electronic health record?

[If yes] Probing: Would you be comfortable putting images into the record?

[If no] Probing: Why not?

I am now going to read you Scenario 2 and ask a series of question that relate to it. Please answer the question based on the scenario.

The Scenario 2  

Tanya is light skinned with many moles as a result of sun exposure. At a follow up appointment a 

different doctor asks if a skin examination can be performed and suggests that photographing the 

moles could help identify any future changes. The examination takes place and no suspicious moles 

are found. The doctor then explains the consent process for clinical photography and acknowledges 

the images will only be used as directed by the patient. This means the patient can choose if the 

images are used in their medical file, for education of other medical professionals or for publication 

including on the internet. The doctor has a digital camera and takes a series of shots to include the 

patients’ arms, legs and face. The doctor then decides that one mole on the patient’s back requires 

surveillance and uses a dermatoscope or close up attachment on a smart phone to take a picture of 

the mole. This is followed up by a wide shot of Tanya’s back to show where the mole is located. The 

doctor says the lesion is larger than normal, but non suspicious because the mole edge is smooth. As 

a precaution the doctor tells Tanya to watch the mole for changes and sends the close‐up image onto 

a colleague who will follow up with Tanya in 12 months’ time.  

Aim: Identify the perceptions about how doctor-taken photographs are used and why they are / are not useful, including how the patients want the data to be used

Q12. Thinking about Scenario 2, do you think the photographs in this scenario useful? Why?

[If yes] Probing: How do you think the photographs in this scenario can be used?

[If no] Probing: Can you please explain why they are not useful?

Q13. In this scenario how do you want the photographs to be used by the doctor?

Q14. Can you please identify and explain why you might or might not want to have photographs taken in these circumstances?

Aim: Identify the value and value co-creation benefit of doctor-taken photographs data for the patient and carer

 

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Q15. Do you think the photographs are valuable in this scenario? Probing: Why?

Q16. Do you think the photographs have value beyond diagnosis? Probing: Why?

Q17. Do you think the photographs have value outside of the clinical consultation Probing: Why?

Aim: Identify the best method of photography (doctor-taken or medial selfies) that leads to patient engagement, by identifying how patient generated health data affects participation in the doctor-patient interaction and how patient generated health data affects patient’s involvement in their own healthcare process.

Q18. How do you think the photographs will affect the relationship between the patient and the doctor?

Q19. How do you think the photographs will affect the involvement in the patient’s own healthcare process?

Aim: Identify the opinion about the future of clinician-taken photography

Q20. What do you think will happen with doctor-taken photographs in the future? Probing: Why?

Aim: Identify if the patient has ever use medical selfies

Q21. Have you ever taken images of yourself for a doctor? [If yes] Probing: How was your experience of sharing the images with your doctor? [If no] Probing: Would you ever take medical selfies for a doctor?

F. WOULD YOU LIKE TO AD ANYTHING ELSE, OR RAISE ANY OTHER POINTS? (5mins)

G. THANK PARTICIPANT FOR THEIR TIME

 

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APPENDIX E: Codebook 1 Open Coding using Overarching Framework

00 Situational Conditions Situational Conditions 

Healthcare is changing (HCIC)

Patients who create data are engaged (PWCDIE)

Photography is ubiquitous (PIU)

Society more visually literate that ever before (SMVL)

Current technology allows patient to take their own medical images (CTAPTTMI)

Smartphones promote collecting data (SPPCD)

Visual media is the new way to communicate (VMITNWTC)

There are few medical photographers left (FMPL)

Understanding patient journey outside the clinical consultation a challenge (UPJOCCAC) 

Law cannot keep up with changes (LCKUWC)

The experience of the medical profession can be dehumanising (TEOTMPCBH)

The experience of the medical profession can be disempowering (TEOTMPCBD)

Traditional Doctor Attitude to Patients using data (TDATP)

Engagement occurs between patient visits (EOBPV)

Data will increase in the future (DWIF)

01 Providers Engagement Process: Information Data Authority  HCP professionalism determines if patient agrees to HCPGD collection (HCPPDDC) 

HCP Taking images on smartphone a barrier (HCPTIOPB)

HCPGD can be a source of common ground (HDCASOCG) 

HCPGD can be intrusive (HCPGDCBI) 

HCPGD can be used to refer (HCPGDCBUTR)

HCPGD can prompt patient motivation (HCPDCPPM) 

HCPGD can terminate relationship (HCPGDCTR) 

HCPGD created for medico‐legal purposes (HCPGDCFMLP)

HCPGD does end up on social media without patient consent (PDEUOSMWC) 

HCPGD doesn’t contribute to relationship with new patients, but can increase trust with known patients (DDBTRFNP) 

HCPGD easier to add to EMR than PGHD (HCPGDETA) 

HCPGD Educates Patient with HCPGD (HCPGDEP)

HCPGD given to patient (HCPGDGTP) 

HCPGD Higher Quality than Patient Data (HCPDHQ) 

HCPGD illustrates the patient journey (HDIPL)

HCPGD improves HCP‐Patient relationship (HCPGDIPR) 

HCPGD is a form of HCP evidence (HCPEV) 

HCPGD is more credible than PGHD (HCPGDMCTPD)

HCPGD is more professional than patient data (HCPDMPPD) 

HCPGD means more attention and better care (HCPDMBC) 

HCPGD needs to have a good reason to be taken (HCPDNGRTBT)

HCPGD not always given to patient (HCPGDNAGTP) 

HCPGD Part of EMR (HCPGDPEMR) 

HCPGD part of HCPs Job (HCPGDPOJ)

HCPGD used to get a second opinion (HCPGDUTGSO) 

HCPGD will not affect the relationship (HCPGDWAR) (HCPGDDAR) 

Healthcare Provider Generated Data (HCPGD)

Patient resources can be complicating (RESCOMC) 

Patient resources can be complimentary (RESCOML) 

Patient resources can be conflicting (RESCONFL)

Patient resources can be confusing (RESCONF) 

Patient resources can be mixed (RESMIX) 

Patient resources can be redundant (RESRED)

Requirements of HCPGD need to be regulated for HCP (ROHCPGDNTBR) 

Requirements of HCPGD not always regulated for HCP (ROHCPGDNE) 

Some patients don’t want HCPDG of themselves on the internet (PDWHCPGDOI) 

Some patients want HCPGD (PWHCPGD) 

Doctor fear medico‐legal implications of remote diagnosis using data (DFMLIORD) 

 

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Provider Heterogeneity 

Doctors becoming patients provides sympathy for the patient experience (DBPPEPE) 

HCP attitude changes to accept data (HCPAC)

HCP risk medico‐legal implications of PGHD (HCPRMLI)

Limited consultation time is a barrier to collecting data (LCTBTCD) 

PGHD has medico‐legal implications (IMLP)

Remote Consultation via data not always rebatable (RCVDNAR)

Requirements on how to use PGHD not regulated for HCP (ROHTUPGHDNR) 

02 Providers Engagement Process: Co‐creation Encouraging data collection 

HCP does explain HCPGD collection (HCPDEDC) 

HCP encourages PGHD collection (HCPEDC) 

Patient should share PGHD with HCP first (PSSDWHCPF)

PGHD useful with HCP input (CDUWHCPI) 

Discouraging data collection 

Post consultation PGHD doesn’t affect engagement (PCPGHDDAE) 

Some HCPs don’t like patients using Dr. Google (HCPDLPUDG)

There is no point to posting the PGHD on social media (NPPIOSM) 

Diagnostic Authority 

Carer compares HCP advice (CCHCPA) 

Carer diagnoses through comparison (CARDIAGC)

Carer encourages patient to maintain treatment with CGHD (CEPMT) 

Carer manages patient treatment with CGHD (CMPT) 

Carer monitoring patient condition with CGHD (CMPC)

Carer motivated to collect data by curiosity (CMTCDBC) 

Patient as equal (PAE) 

Patient Role Limitations within the medical model (PRL)

With PGHD HCP may not control the diagnostic process (WPDHCPMNCP) 

Consent for the Data 

Carer stops giving consent for HCPGD when patient is able to (CSGCWPA) 

Consent for data varies with level of emergency (CVWAES)

Consent for HCPGD not clear (CFHCPGDNC) (CNAC) 

Consent is specific to use (CISTU) 

Consent not always sought for data (CNAS)

Legal constraints determine sharing of data (LCDS) 

Patient agrees to HCPGD (PATHCPGD) 

Patient has limited choice to say no to HCPGD (PLCTSN)

Patient permission required to use and share the data (PPRSD) 

Patients need to give consent for HCPGD collection and use (PCMP) 

PGHD is more voluntary than HCPGD (PGHDMV)

Verbal consent sought, not written consent for data (VCSNWC)

Services Marketing 

Data can be used for competitive advantage (DCBUFCA) 

Data can be used to advertise a service (DCBUTAS)

Data can be used to identify market segments (DCBUTIMS)

Data can improve patient satisfaction (DCIPS) 

PGHD can be used to increase service value (DCBUTIV)

PGHD can improve patient satisfaction (DCIPS)

Service Planning  Data could be used to project future outcomes (DCBUTPFO) 

Data could be used to triage patients (DUTTP) 

HCP could train patient on PGHD collection (HCPSTPDC)

HCP could train patient on PGHD limitations (HCPSTPDL) 

PGHD could become part of the electronic medical record (PDPEMR)

PGHD could triage patients through asynchronous communication (PDCHTPTAC) 

Requirements of PGHD could be explained to patient (ROPGDHNE) 

04 Service Encounter Process: Value Creation Data Collection  Carer Generated Health Data (CGHD) 

Carer encourages PGHD collection (CEDC) 

Patient Generated Health Data (PGHD)

Patients may not collect data unless its solicited (PMNCDUIS) 

PGHD can be solicited or unsolicited (PDHDCBSOU) 

Creating and using PGHD is a patient rights (PRS)

Data easy to collect and share (DETCAS) 

Data not easy to collect and store in EMR (DNETCS) 

PGHD & CGHD documents something of concern to the patient & carer (DDSC) 

 

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Unsolicited data can be useful (UDCBU) 

Unsolicited data is a challenge (UDAC)

Patient will use Dr. Google (PWUDG)

Patients may not share PGHD with HCP (PMNDHCP) 

PGHD created in comfort of home (PGHDCICH)

PGHD has more uses than HCPGD (PDMUHCPGD)

PGHD is more empowering that HCPGD (PGHDMETHCPD) 

PGHD is more time accurate than HCPGD (PDMAHCPD)

Computer is a better place than a phone to save the data (CBPTS)

Data kept when relevant to future care (DKWRTFC) 

Data not always kept (DNAK) 

Medical images sit beside social images on mobile phones (MISBSP)

05 Service Encounter Process: Value Co‐creation Consumer Co‐creation 

Carer Shares CGHD with HCP (CSDHCP)

Carer uses data in clinical care (CUDICC) 

CGHD overcomes patient limitations (CGHDOPL) 

Patients do share PGHD with HCP (PSDHCP)

PGHD educates HCP (PDEHCP) 

Consumer Co‐destruction 

Patient insists on the use of PGHD and the data is wrong (PIUPGHD) 

Patient may ask for diagnosis of someone not present using PGHD (PADSNP)

Patients may abuse Healthcare System with PGHD (PMHCS) 

PGHD can contribute to misdiagnosis (DCCTM) 

PGHD can lead to self‐diagnosis and can contradict the HCP (SDCCP)

PGHD can minimise other symptoms (DCMOS) 

PGHD could mean diagnosis without a doctor (PGHDCMDWD) 

PGHD may delay medical help (PDCDMH)

Data Use  Data can be confronting (DCC) 

Data can be grotesque (DCG) 

Data can be used for diagnosis (DIAG)

Data can be used for follow‐up (FLWUP)

Data can be used for Forensic Evidence (DUFE) 

Data can be used for HCP personal reference library (HCPPR)

Data can be used for Improved Diagnosis and Management of Chronic Conditions (IDMCC) 

Data can be used for publication (DCBUFP) 

Data can be used for remote diagnosis (DCBURD)

Data can be used for research (DCBUFR)

Data can be used to crowd source diagnosis (DCBUTCSD) 

Data can be used to educate future patients (DCBUTEFP)

Data can be used to increase urgency of medical care (DCBUTIUMC)

Data can be used to make discussions with family easier (DCBUTMDWFE) 

Data can save a patient’s life (DCSPL)

Data has benefits for the wider community (BWC)

Data Improves diagnosis and management of slow progressing conditions (IDMSPC) 

Data Improves diagnosis of transient conditions (IDMTC) 

Data is a Record (REC) 

Data is an objective truth (DIOT) 

Data is better than memory (BTMEM) 

Data records body before medical intervention (DRBBMI)

Data records changes over time (DRCOT) 

Data records treatment over time (DRTOT) 

Data reduces guesswork and alternate diagnoses (DRGAD)

Data Usefulness of Heterogeneous to Situation (DUIH) 

HCP Misusing images a barrier (HCPMI) 

Patient & Carer motivated to capture data by preventative health (MBPH)

Patients want to be helpful (HELPFUL) 

PGHD can be used for entertainment (DCBUFE) 

PGHD can be used to alter treatment plan (ALTPLAN)

PGHD can be used to create artwork (DCBUTCA) 

PGHD can be used to get a second opinion (PGHDCBUTGSO) 

PGHD can be used to increase engagement (PDCBUTIE)

 

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PGHD can be used to prompt patient for behaviour change (PGHDCBUTPBC) 

PGHD can be used to refer (PGHDCBUTR)

PGHD has unintended benefits (PGHDHUB)

PGHD illustrates the patient journey (PGHDIPJ) 

PGHD is a form of patient evidence (PEV)

PGHD is a patient ordered examination (DIPOE)

PGHD makes an abstract concept tangible and real (DMACTR) 

PGHD part of patient personal record (PGHDPPR)

PGHD records healthcare journey (DRHCJ)

Data Credibility  Data Credibility an Issue (DCI) 

Data Credibility overcome by high volume of PGHD (DCOBHVD) 

Data not always accurate (DNAA)

Data Quality an Issue (DQI) 

Data Quality not an Issue (DQNI) 

Data Quantity an Issue (DQTI)

HCP and patient have different ideas about what PGHD shows (HCPPDI) 

PGHD is Partial Evidence (PGHDIPE) 

PGHD not always useful (DNAU)

Provider Co‐creation (facilitation) 

HCP controls the diagnostic outcome (HCPCO) 

HCP diagnosis may vary when between clinicians using PGHD (HCPDVWUD) 

HCP happy to store patient data (HCPHTSPD)

HCP heterogeneity determines engagement facilitation (HCPHDEF) 

HCP uses data in clinical care (HCPUDICC) 

Confidentiality practices regarding data vary (CPVHCS)

Patient data that is shared with other HCP must be done confidentially (PDSMBC) 

Patients and HCP aware of data misuse (PAODM) 

Violating patient permission regarding data causes issues (VPPCI)

HCP refuses to see PGHD by email (HCPRTSDBE) 

PGHD can be shrugged off by HCP (DCBSOBHCP) 

06 Service Encounter Process: Engagement

Physiological  Observed in Literature 

Cognitive  Data improves patients self‐advocacy (DIPSA) 

Data promotes patient to remember the health care journey (PTMEM)

PGHD gives patients more credibility (PGHDGPMC) 

PGHD helps dispel idea patient is a hypochondriac (PGHDIPIH) 

PGHD increases awareness of condition (IAC)

PGHD increases bargaining power with HCP (PGHDIBP) 

PGHD proves patient is not a making it up (PINMIT) 

PGHD reminds patient of the fragility of  human body (DRPFHB)

Emotional  Data helps patient come to terms with disease (DHPCTTWD) 

Data helps patient cope with disease (DHPCWD) 

Data improves sense of control (DISOC)

Patient empowerment occurs when data is shared with HCP (PEOWDISWHCP) 

Patient reassurance can occur when using HCPGD (REASSHPD) 

Patient reassurance can occur when using PGHD (REASS)

PGHD can be a consolation to the healthcare process (DCBACTHCP) 

PGHD Can Be Embarrassing (DCE) 

PGHD can cause anxiety (PGHDMCA)

PGHD can increase patient empowerment (PGHDCAPE) 

PGHD increases sense of responsibility (ISR) 

PGHD reduced the feeling of powerlessness (PGHRFOP)

Behavioural  Data can prompt asking questions of HCP (DCPAQ)

Data demonstrates patient is being pro‐active (DDPIBP) 

Data makes patient more observant (DMPMO)

Finding a legitimate source for self‐education is difficult (FLSFSED)

Patient can compare data over time (PCCDOT) 

Patient compares PGHD to others patients data (PCDOD) (COMPNET)

Patient decides treatment plan using PGHD (PDT)

Patient managing own treatment with PGHD (PMOT) 

PGHD can prompt asking for feedback from HCP (DCPAFF)

 

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PGHD improves participation (DIPP) 

PGHD improves patient involvement (DIPI)

PGHD is patient taking the initiative in their healthcare (PGHDIPTI)

PGHD motivates HCP visit (DMHCPV) 

PGHD motivates patient to continue treatment (PGHDMPTCT)

PGHD promotes patient self‐education (PSE)

PGHD promotes patient to self‐diagnose (PGHDPPTSD) (PGHDPPD) 

PGHD promotes patients to monitor their own condition (PMOC)

Self‐education useful once diagnosis is made by HCP (SEUODM)

Self‐Education using PGHD can lead to anxiety (SECLTA) 

07Patient Assessment Process: Resource Characteristics 

Technical Requirements 

Technical issues a barrier to collecting data (TIBTCD)

08 Patient Assessment Process: Relational Factors   

Communication  Data overcomes inability to describe condition (OITDC) 

PGHD can be a source of miscommunication (DCBASOM)

PGHD improves communication (IC) 

PGHD promotes misinformation (PGHDPMI) 

Co‐creation  Data promotes shared care (SHCARE)

Good relationship needed for data to be collected, shared and used (GRNFDTBCAU) 

Heterogeneity determines relationships (HDR) 

Increased responsibility (IR)

Increases sense of trust for the doctor when using PGHD (IST)

Not using data won’t affect relationship (NUDWAR) 

Patient wants HCP to show interest in data (PWHCPTSID)

Patients can be apprehensive about sharing PGHD (PCBAASD) 

PGHD can change doctors opinion of patient (DCCDOOY) 

PGHD can improve patient‐HCP relationship (PGHDIHCPPR)

Trust needed for data to be collected, shared and used (TNFDTBCAU)

Trust required to share PGHD (TRTSD) 

Supported Autonomy 

Observed In Study 2 

Respect  Observed In Study 2 

09 Patient Assessment Process: Service Assessment 

Organisational Capability 

Data can aid HCP limitations (DCIHCPL) 

Data improves convenience of healthcare service (DIC)

Data Improves Health Service Continuity (IHSCONT) 

Data improves healthcare cost reduction (HCCR) 

Data improves healthcare time reduction using data (HCTR)

Data motivates HCP action (DMHCPA) 

Data used for a reduction in the number of treatments (RIT) 

Not using PGHD can terminate the use of a service (NUDCTUS)

PGHD overcomes limited healthcare service resources (PGHDOLHCSR) 

When HCP refuses to see PGHD patients may find a new HCP (HCPRTSD) 

Technical Capability 

An EMR improves veracity of health information (EMRIVI)

An EMR is needed for the data (EMRWPSCINN) 

Data could be stored in a central archive or database (DCBSICA) 

Data needs to be tagged (DNTBT)

EMR Extends Doc‐Pat relationship (EMREDPR)

No electronic medical record a potential barrier to using data (NEMRB) 

Patient data will become automatically collected or tagged (PDWBAC)

Technology could categorise or help understand PGHD (TCCPGHD) 

Until an EMR system is developed a workaround is used (UASIDAWIU) 

Confidence  Observed In Study 2 

Satisfaction  Observed In Study 2 

10 Consumer Heterogeneity 

Demographics  Anonymity a barrier to using data (AABUB)

Cultural and religious diversity can be a barrier to creating the data (CRDBCD) 

Patient Age a barrier to creating and using data (PABCD) 

Patient Age Determines CGHD (PASCGHD)

 

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Peer Network  Carer Reassurance can occur when using PGHD and CGHD (CREASS) 

Carers network manages patient treatment with CGHD (CNMPT)

CGHD allows carer to experience patient healthcare journey (CGHDACTEPJ)

CGHD can be used to compare to other Carers (COMPCARE) 

CGHD demonstrates good caring (CGHDDGC)

CGHD educates patient (CGHDEP)

CGHD improves relationship with network (CGHDIRN) 

CGHD improves relationship with patient (CGHDIRP)

CGHD is a form of carer evidence (CEV)

CGHD motivates patient to action (DMPTA) 

CGHD promotes carer self‐education (CSE) 

CGHD relieves stress when compared (CGHDRSC)

Education of Carers Network (EOCN) 

Education of HCP Network using data (EOHCPN) 

Education of patients’ network using data (EPN)

Not all PGHD is for social media or the internet (NAPGHDIFSM) 

Patient wants to edit own data (PWEOD) 

Patients find service through network (PFSTPN)

PGHD & personal network used when HCP not available (PDNHCPNA) 

PGHD and patient network can cause loss of confidence in doctor (PGHDCCLOCID) 

PGHD can be a focus of conversation within the patients network (DCBAFOC) 

PGHD helps network come to terms with disease (DHNCTTWD) 

PGHD shared on social media (PGHDSSM) 

PGHD shared with patient network for more information & Information exchange (PDSPNFMI) 

PGHD shared with patient network for social support (PDSPNFS) 

Sharing data online can result in positive and negative experiences (OHGECBPAN) 

Symptoms generated through patient network not always accurate (SGTPNNAA) 

Self‐Confidence  Observed In Study 2  

Self‐Advocacy  Observed In Study 2 

 

 

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APPENDIX F: Taking Mobile Phone Photographs using a Standardised Methodology

Overview Images taken on mobile phone by patients have been aiding diagnosis since 20041. Recently images taken on cameras by teachers and research assistants were used to accurately predict infection healing rates of skin sores in remote Australian communities2. Therefore, the images you take on mobile phone can be used for the detection of surgical site infections. This 30-minute training session will teach you how to take medical photographs of the wound site the day after your child’s surgery. The most important thing about this activity is that you use the same method for photography each time you take an image. We need to see the changes of the wound over time and the easiest way to observe that is to have no changes in the way the images look. Below is an overview of this training session and what is required from you when you get home:

Today you will complete Questionnaire Time 1

The researcher will demonstrate how to take a medical photograph on a mobile phone and instruct you on: o The equipment o Mobile phone camera settings o Lighting conditions o Positioning of your child o Photography technique o Emailing an image

You will undertake all activities above under the supervision of the researcher

The researcher will ensure the process is understood and answers any questions

Once you are home please take images on day 2,4,6 and 10 days after the operation (or more frequently if you are worried)

On day 14 you complete you complete Questionnaire Time 2 and send it back in the stamped self-addressed envelope.

On day 21 a researcher will call you for an interview to discuss any of the differences between the questionnaires and your thoughts, experiences and feeling of taking medical images.

At your follow up appointment the researcher will also be present to answer any questions Taking Mobile Phone Photographs using a standardised methodology3 Equipment

‐ A Smart Phone: All smart phones have the technical ability to take medical images. The equipment you will use to take the images is the camera, the flash, the screen to focus the image and view your results and an email program to send the image to a secure email address

‐ 15cm white self-adhesive scales: These are places on the wound site to aid camera focus, colour correction and improve the accuracy of detecting healing rates. One is required per photo session.

‐ The Secure Email Address: myscar@health.qld.gov.au

                                                            1 Armstrong, D.J., The mobile phone as an imaging tool in SLE. Rheumatology (Oxford), 2004. 43(9): p. 1195. 2 Bowen, A.C., et al., Short-course oral co-trimoxazole versus intramuscular benzathine benzylpenicillin for impetigo in a highly endemic region: an open-label, randomised, controlled, non-inferiority trial. The Lancet. 384(9960): p. 2132-2140. 3 Bowen, A.C., et al., Standardising and Assessing Digital Images for Use in Clinical Trials: A Practical, Reproducible Method That Blinds the Assessor to Treatment Allocation. PLoS ONE, 2014. 9(11): p. e110395.

 

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Mobile Phone Camera Settings

‐ Turn on the phone ‐ Open the camera application provided by your manufacturer ‐ Turn the flash to ON ‐ Turn off all other settings ‐ Use the ‘Portrait’ image dimension setting

Lighting conditions The main light source is the mobile phone camera flash. This provides a standard light source. Always photograph indoors, turn on all over head lights and open any curtains, however you should avoid direct sunlight and bright overhead spot lights to minimise over-exposure. Positioning of your child When working with children, prior to taking any photographs, reassure the child the process will be quick and painless. Position your child comfortably on the floor, bed or change table with a neutral background (preferably white) beneath the site to be photographed. Remove any clothing, nappies or dressings covering the surgical site. When photographing place yourself above the surgical site as shown in the illustration below. To maximise sharpness and depth of field, the camera lens plane must be positioned parallel to the wound plane. Photography technique Place a 15 cm white scale in a horizontally across the child’s abdomen as shown in the diagram below. The 0mm mark should be at the furthest left hand point of the wound site and as close as possible to the bottom of the lowest point of the wound site without obscuring any edges of the lesion. Position the camera to capture the scale with the 0 and 15 cm marking the edge of the photo frame making sure the camera is parallel to the abdomen. Once the frame is positioned place your finger on the screen to focus on the scale. Once focussed take an image. A minimum of three images should be taken at each time point to ensure that at least one adequate image was available for review, a technique known as bracketing. Check each image and if unclear, blurred, dark or too light, repeat the process until a satisfactory image is gained. Take follow up images of the same site using the same technique on day 2,4,6 and 10 after surgery (or if you are worried). For consistency of check the orientation of previous images before capturing the next image.

 

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Image OK Image too light

Image to dark Image to blurred

Emailing the Images

‐ Open the mail application provided by your manufacturer on your smart phone ‐ Create an email and send to the address: Craig.McBride@health.qld.gov.au ‐ Put in the subject line your participant ID number ( ) and day when the photo was taken

(e.g. ID , Day 0) ‐ Insert the image as an attachment into the email ‐ Send the email

Quality control process to be done by researcher All images will undergo a check for quality by a qualified researcher using a predefined quality check (QC) as below:

1. Is the image interpretable? a. Image adequate

 

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b. Image unable to be interpreted 2. Incorrect exposure?

a. Too light b. Too dark c. Too high in contrast

3. Incorrect focus? a. Lack of depth of field b. Lack of focus

Parents taking more than two consecutive images deemed unable to be interpreted will be contacted and any issues will be resolved. Quick Guide:

Lay your child on a flat surface in a well-lit room

Remove clothing, nappies and dressings to expose the wound/s

Place a scale on your child’s abdomen with 0cm at the furthest left and lowest point of the wound

Open the camera app on your phone (please draw app icon)

Turn the flash to the on setting

Ensure the camera is parallel to the abdomen

Take three images to ensure focus and exposure

Open the email app on your phone (please draw app icon)

Create a new email with the address: myscar@health.qld.gov.au

In the subject line type ID and the day (after surgery) the wound was taken

Insert the best image and press send

Reminder has been set with the email address? (please tick for yes)

Thank you for your time. Please call Kara Burns on 0414 294 967 if you have any questions regarding the medical photography.

 

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APPENDIX G: Study 2 Questionnaire 1

PLEASE NOTE: Answers are confidential and will not be shared with your doctor. Information you provide on your service experience will be deidentified and used by Lady Cilento Children’s Hospital (LCCH) to improve future services. Demographic Information Please mark ONE BOX per question

1. Your age: Under 18 ☐ 19-30 ☐ 31-40 ☐ 41-50 ☐ 51-60 ☐ 61-70 ☐ Over 70 ☐

2. Your child’s age: Under 1 ☐ 1-4 ☐ 4-12 ☐ 12+ ☐

3. What is your gender? F ☐ M ☐

4. Household Income: Under $30,000 ☐ $30,001-50,000 ☐ $50,000-80,000 ☐ $80,001-120,000 ☐ Over $120,000 ☐

5. Level of education attained: Primary School ☐ High School ☐ TAFE ☐ Degree ☐ Post Grad ☐

6. Please list your post code:

In general how do you rate the following? Please CIRCLE one number 7. Your level of involvement in managing your own health: (Low) 1 2 3 4 5 6 7 (High) 8. Your level of involvement in managing your child’s health: (Low) 1 2 3 4 5 6 7 (High) 9. Your level of participation with the healthcare staff of LCCH (Low) 1 2 3 4 5 6 7 (High) 10. Your level of participation with LCCH as an organisation: (Low) 1 2 3 4 5 6 7 (High) 11. Your level of expertise in healthcare: (Low) 1 2 3 4 5 6 7 (High) 12. Your level of expertise in using mobile phones: (Low) 1 2 3 4 5 6 7 (High) 13. Your ability to take the medical photographs: (Low) 1 2 3 4 5 6 7 (High) 14. Your willingness to take the medical photographs: (Low) 1 2 3 4 5 6 7 (High) Please indicate how strongly you agree with the following statements: 15. The quality of the service at LCCH is excellent: (Disagree) 1 2 3 4 5 6 7 (Agree) 16. I am extremely satisfied with the service at LCCH: (Disagree) 1 2 3 4 5 6 7 (Agree) 17. I believe taking the medical photographs is important: (Disagree) 1 2 3 4 5 6 7 (Agree) 18. I take the medical photographs only because I have to: (Disagree) 1 2 3 4 5 6 7 (Agree) 19. Taking medical photographs is useful for me: (Disagree) 1 2 3 4 5 6 7 (Agree) 20. Taking medical photographs is valuable for me: (Disagree) 1 2 3 4 5 6 7 (Agree) 21. The surgeon is very dominant in our conversations (Disagree) 1 2 3 4 5 6 7 (Agree) 22. The surgeon lets me make decisions about my child (Disagree) 1 2 3 4 5 6 7 (Agree)

 

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Please mark ONE BOX per question

23. When I think about my child’s surgery I believe the following:

I can’t understand what is happening to them

I can’t manage the information the doctor gives me

The information the doctor gives me is clear to me

Despite my child’s surgery I am confident in my knowledge of how to manage their health

24. When I think about my child’s health I believe the following: I let

others take care of my child’s health

I try to manage my child’s health but feel that I am not totally able to

I strictly follow the rules the doctor has given to me

I can manage my child’s health without the doctor being present

Have you done any of these activities in relation to your child’s health?

25. Taken images or made a video of a wound (or other visible symptom e.g. rash)? Yes ☐ No ☐

26. Monitored a wound / rash by looking at its colour, shape or size? Yes ☐ No ☐

27. Purchased items for your child’s wound / rash like dressings, creams or medication? Yes ☐ No ☐

28. Changed the dressing on your child’s wound / rash? Yes ☐ No ☐

29. Browsed online, read about or asked friends about your child’s wound / rash? Yes ☐ No ☐

30. Shared and / or discussed the images with anyone in person, or on social media? Yes ☐ No ☐

31. Joined an online health group? Yes ☐ No ☐

32. Attempted to self-diagnose based on symptoms or information gathered? Yes ☐ No ☐

33. Sent the images to medical staff? Yes ☐ No ☐

34. Had unplanned contact with medical staff because of the images you sent? Yes ☐ No ☐

35. Changed any appointments with your surgeon based on symptoms? Yes ☐ No ☐

36. Used the images or video for a non-health purpose?(e.g. story-telling, entertainment) Yes ☐ No ☐

Thank you for your time. Please let me know when you have finished this survey.

 

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APPENDIX H: Participant Information Sheet / Consent Form / Child Assent Form

Participant Information Sheet/Consent Form - Parent/Guardian

Lady Cilento Children’s Hospital, Brisbane Title A pilot study investigating the acceptability of parent/caregiver smartphone

photographs of surgical wounds to identify surgical site infections and the effect on healthcare engagement.

Protocol Number Version 1 (dated 3rd December, 2015) Principal Investigators Dr Craig McBride, Dr Bhavesh Patel

Surgical Team: Infants, Toddlers, Children Department of Paediatric Surgery, Lady Cilento Children’s Hospital Level 7d, 501 Stanley Street, South Brisbane 4010 (07) 3068 1111 Ms. Kara Burns PhD Candidate, Medical Photographer QUT Business School Queensland University of Technology Mob: 0414 294 967

Please make sure you have read and understood all 6 pages before signing the Consent Form to participate. The Assent Form is also to be filled out by your child if able. Part 1 What does the child’s participation involve? 1 Introduction

We are asking your consent for the child in your care to take part in this research project: A pilot study investigating the acceptability of parent/caregiver smartphone photographs of surgical wounds, to identify surgical site infections and the effect on healthcare engagement. The project aims to try and find out how often wounds become infected after children leave hospital, and to find out parent/caregiver views on the use of digital technology This Participant Information Sheet/Consent Form tells you about the research project. It explains the tests and research involved. Knowing what is involved will help you decide if you want your child to take part in the research. Please read this information carefully. Ask questions about anything that you don’t understand or want to know more about. Before deciding whether or not your child can take part, you might want to talk about it with a relative, friend, or local doctor.

Participation in this research is voluntary. If you, or your child, do not wish to take part, you do not have to.

We will still give you our best possible care whether or not you take part. If you do choose to take part you can still withdraw at any time. If you decide you want your child to take part in the research project, you will be asked to sign the consent section at the end of this information sheet. By signing it you are telling us that you:

• Understand what you have read • Consent to your child taking part in the research project • Consent to your child having the tests and research that are described

 

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• Consent to the use of your child’s personal and health information as described. You will be given a copy of this Participant Information and Consent Form to keep. 2 What is the purpose of this research? One of the risks of performing surgery is the risk of infection in the incisions your surgeon has made. If wounds become infected, they usually do so some days after the operation. Since most of the children we operate on are sent home from hospital the same day, these infections will happen when your child is not in hospital. Our best guess is that these infections occur in 1-2% of children after an operation, but we are not sure. There is very little good research telling us how common wound infections are, and even less good research in children. If we do not know how common wound infections are, then we cannot test if any change in what we do decreases the chances of a wound infection. This research is a preliminary study (a pilot study). We will use the information gathered from this pilot study to help us plan a larger study. This larger study will try to answer the questions

1. How common are wound infections after operations on children? 2. What factors increase the risk of wound infections?

It’s difficult for us to review every child multiple times after an operation. Most people now have a phone that can take photographs of good quality, and a phone data plan that allows them to send photographs to other people. We are hoping to use you as our photographer, to enable us to review photos of your child’s surgical scar in the days following their operation. 3 What does participation in this research involve? Your child will be participating in a pilot research project. Because there is so little information about wound infections in children after they leave hospital, we need a small study to help us properly plan a larger study. This pilot study has been designed to make sure the researchers interpret the results in a fair and appropriate way; and avoids study doctors or participants jumping to conclusions. Following signing the consent form you (and your child, if they are old enough to understand and help) will be shown how to take a photograph of the surgical scar and send that photograph to us. There are no new or experimental dressings or operations used in this study – your child’s operation is no different from the one they would have received before this study started. Information including age, ethnicity, type of surgery and any antibiotics we use will be documented for your child. This information will remain confidential and accessible only to those directly involved in your child’s medical care or this research project. As a parent or caregiver you are also part of this study. We want to understand your opinions, experiences and feelings about taking these medical photographs. You will be asked about your current motivation toward healthcare and if this changes throughout your experiences. This will involve filling in a survey before you take your first photograph. The survey will be repeated after the wound is healed and then you will be asked to participate in a 30-minute phone interview to share your thoughts, experiences and feelings. To help you help us we will train you to take photographs of the wound shortly after your child’s operation and while they are still in hospital. You will then be asked to take photographs several times in the days following your child’s discharge from hospital, and send those photographs to us. Only people involved in the research project will look at those photographs. If any photograph shows a wound infection, or if we are concerned about a photograph, then we will contact you with a plan of how to treat this infection. All of the researchers looking at the photographs are trained to detect an infection. If you are concerned about the wound you will be able to contact us directly to discuss this with us. You will not be charged anything for taking part in this study, nor will you be paid for taking part. 4 What do my child and I have to do? Participation in this study will not alter the management of your child’s surgery in any way. All we ask from you are several of photographs of the wound, completion of two surveys and participation in a short phone interview. We will not ask you to make extra visits to the hospital over and above those appointments we would normally make for your child.

 

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5 Other relevant information about the research project A total of 60 children will be recruited to this study. All children involved in this study will be recruited from Lady Cilento Children’s Hospital, Brisbane. 6 Does your child have to take part in this research project? No. The decision to take part in this, or not, is entirely up to you and your child. If you do not wish for your child to take part, they do not have to. If your child doesn’t want to take part, they don’t have to. If you decide to take part and later change your mind, you are free to withdraw them from the project at any stage. If you do decide that your child can take part, you will be given this Participant Information and Consent Form to sign, and you will be given a copy to keep. Whatever you decide, that’s ok with us. Either way we will still give your child the best care we can – they’re too important for us not to do that. 7 What are the alternatives to participation? Your child does not have to take part in this research project to receive treatment at this hospital. If you choose not to participate in this study your child will receive exactly the same standard of care as all other patients we treat. 8 What are the possible benefits of taking part? We perform approximately 450 operations per month. Some of these children will develop wound infections; but we don’t know which ones or what the risks are. The information you and your child give us about their wounds will help us to work out what those risks are – so that we can use that information to plan future studies and to see if any changes we make decrease the chances of a wound infection for children in the future. 9 What are the possible risks and disadvantages of taking part? There are none that we can identify. The photographs will be sent to a secure site, and only viewed by people involved in this research project. There will not be any names on the photographs – you will be given a card with a number that we can match to your child to help us identify your child if we need to contact you regarding treatment for a wound infection. 10 What if new information arises during this research project? Sometimes during the course of a research project, new information becomes available about the treatment that is being studied. If this happens, one of the researchers will tell you about it and discuss with you whether you want your child to continue in the research project. If you decide to withdraw the participant, the researcher will make arrangements for their regular health care to continue. If you decide your child is to continue in the research project, you will be asked to sign an updated consent form. Also, on receiving new information, the study doctor might consider it to be in the child’s best interests to withdraw from the research project. If this happens, he/ she will explain the reasons and arrange for the participant’s regular health care to continue. If your child develops a wound infection we will contact you to discuss the appropriate treatment for this. If you are concerned about your child’s wound you can take an extra photo at any time and send it to us for us to view. 11 Can your child have other treatments during this research project? Participating in this study will not affect any other treatments the child is having. It is important to tell the study doctor and the study staff about any treatments or medications your child may be taking, including over-the-counter medications, vitamins or herbal remedies, acupuncture or other treatments. You should also tell the study doctor about any changes to these during the child’s participation in the research project. We are particularly interested if you see your family doctor about your child’s wound, or if they receive antibiotics. 12 What if your child is withdrawn from this research project?

 

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If you decide to withdraw from this research project, please notify a member of the research team. Your decision to withdraw from the study will not affect routine medical treatment or your relationship with staff of the Department of Paediatric Surgery at Lady Cilento Children’s Hospital. 13 Could this research project be stopped unexpectedly? As there is an observational study only, it is unlikely that this project will be stopped unexpectedly. 14 What happens when the research project ends? When your child completes all aspects of this study there will be no further requirements in relation to this study from you or your child. A brief report outlining research findings will be emailed to you with your permission at the completion of the study in mid 2016. Part 2 How is the research project being conducted? 15 What will happen to information about your child? By signing the consent form you consent to the study doctor and relevant research staff collecting and using personal information about your child for the research project. Any information obtained in connection with this research project that can identify your child will remain confidential. All information collected as part of this study will be stored safely in a locked filing cabinet in a locked office, and on password protected computer files. The figures we record from your child, eg demographics and survey results, will be stored under a study number not an actual name. Any form that can identify your child, such as the consent and assent forms, will be stored separately to the other information in another locked office. This information from the study will be kept for 15 years in accordance with hospital policy. It will then be destroyed in a confidential shredder and using the latest data cleaning software. Only the investigators in this study can access this information. Your child’s information will only be used for the purpose of this research project and it will only be disclosed with your permission, except as required by law. Information about your child may be obtained from their health records held at this and other health services, for the purpose of this research. By signing the consent form you agree to the research team accessing health records if they are relevant to participation in this research project. We anticipate that the results of this research project will be published and/or presented in a variety of forums. In any publication and/or presentation, information will be provided in such a way that the participant cannot be identified. A study number only will be used and the information is presented in journals or conferences as group results, that is an average of figures obtained rather than individual results. Information about participation in this research project may be recorded in your child’s health records. 16 Who is organising and funding the research? This research project is being conducted two paediatric surgeons: Dr Craig McBride, and Dr Bhavesh Patel. It is also being conducted by Kara Burns – a PhD candidate at the Queensland University of Technology. She has a great deal of experience and expertise as a medical photographer. This research project forms a part of her PhD studies. The Department of Paediatric Surgery is funding the research. 17 Who has reviewed the research project? All research in Australia involving humans is reviewed by an independent group of people called a Human Research Ethics Committee (HREC). The ethical aspects of this research project have been approved by the HREC’s of Children’s Health Queensland and the Queensland University of Technology. This project will be carried out according to the National Statement on Ethical Conduct in Human Research (2007). This statement has been developed to protect the interests of people who agree to participate in human research studies. 18 Further information and who to contact Clinical contact person

 

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Reviewing HREC approving this research

Local HREC Office contact (Single Site -Research Governance Officer)

The Children’s Health Queensland Hospital and Health Service Human Research Ethics Committee (HREC) has approved this study. If you have any concerns and/or complaints about the project, the way it is being conducted or your child’s rights as a research participant, and would like to speak to someone independent of the project, please contact: the Co-ordinator of the HREC on 3069 7002 or email CHQETHICS@health.qld.gov.au

Name Craig McBride Position Senior Staff Specialist Paediatric Surgeon

Surgical Team: Infants, Toddlers, Children Children’s Health Queensland

Telephone (07) 3068 5308 Email Craig.McBride@health.qld.gov.au

Reviewing HREC name Children’s Health Services Human Research Ethics Committee

HREC Co-ordinator Amanda Smith Telephone (07) 3069 7002 Email Amanda.Smith7@health.qld.gov.au

Reviewing HREC name Queensland University of Technology, QUT Business School Human Research Ethics Committee

Ethics Officer Dr. Marilyn Healy Telephone (07) 3138 7651 Email m.healy@qut.edu.au

Name Peng Tjun Choy Position Research Governance Officer Telephone (07) 3636 4445 Email Peng_Tjun_Choy@health.qld.gov.au

 

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Consent Form – Parent/Guardian (Participant Copy)

Title A pilot study investigating the acceptability of parent/caregiver smartphone photographs of surgical wounds to identify surgical site infections and the effect on healthcare engagement.

Protocol Number

Version 1 (dated 3rd December, 2015)

Investigators

Kara Burns, Dr Craig McBride, Dr Bhavesh Patel

Location Children’s Health Services Queensland Declaration by Parent/Guardian I have read the Participant Information Sheet or someone has read it to me in a language that I understand. I understand the purposes, procedures and risks of the research described in the project. I have had an opportunity to ask questions and I am satisfied with the answers I have received. I freely agree to my child participating in this research project as described and understand that I am free to withdraw them at any time during the project without affecting their future health care. I understand that I will be given a signed copy of this document to keep.

Name of Child (please print)

Name of Parent/Guardian (please print)

Signature of Parent/Guardian Date

Declaration by Investigator

I have given a verbal explanation of the research project, its procedures and risks and I believe that the parent/guardian of the participant has understood that explanation. I have provided the parent/guardian with a copy of the participant information sheet.

Name of Investigator (please print)

Signature Date

Independent Witness I have witnessed the receipt of a Patient Information Sheet by the parent/guardian and exchanging of information between the investigator and the parent/guardian about the study.

Name of Witness (please print)

Signature Date

Note: All parties signing the consent section must date their own signature.

 

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CHILD ASSENT FORM Hello …………………………………………………………………………… I work at this hospital and I want to know if your operation wound (your new scar) becomes infected, or has problems, after you leave hospital.

Is it OK for us to talk to you about your operation?

Is it OK if mum or dad takes a photo of your operation scars, so that we can see how quickly it gets better and if it gets infected?

If you change your mind and you don’t want to talk about this any more or have the photos taken, then that would be ok too. Can you circle (or colour in) for YES, and

for NO on the back of this page to tell us if it’s ok? Thanks

 

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My name is

I am happy to talk to you about my operation

I’m happy to point to the funny faces when you ask me to

I’m happy for mum or dad to take a photo of my wound and send it to you

I know it’s ok

for me to change my mind

Print your name here

 

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APPENDIX I: Study 2 Questionnaire 2

PLEASE NOTE: Answers are confidential and will not be shared with your doctor. Information you provide on your service experience will be de-identified and used by Lady Cilento Children’s Hospital (LCCH) to improve future services. In general how do you rate the following? Please CIRCLE one number 37. Your level of involvement in managing your own health: (Low) 1 2 3 4 5 6 7 (High)

38. Your level of involvement in managing your child’s health: (Low) 1 2 3 4 5 6 7 (High)

39. Your level of participation with the healthcare staff of LCCH (Low) 1 2 3 4 5 6 7 (High)

40. Your level of participation with LCCH as an organisation: (Low) 1 2 3 4 5 6 7 (High)

41. Your level of expertise in healthcare: (Low) 1 2 3 4 5 6 7 (High)

42. Your level of expertise in using mobile phones: (Low) 1 2 3 4 5 6 7 (High)

43. Your ability to take the medical photographs: (Low) 1 2 3 4 5 6 7 (High)

44. Your willingness to take the medical photographs: (Low) 1 2 3 4 5 6 7 (High)

Please indicate how strongly you agree with the following statements: 45. The quality of the service at LCCH is excellent: (Disagree) 1 2 3 4 5 6 7 (Agree)

46. I am extremely satisfied with the service at LCCH: (Disagree) 1 2 3 4 5 6 7 (Agree)

47. I believe taking the medical photographs is important: (Disagree) 1 2 3 4 5 6 7 (Agree)

48. I take the medical photographs only because I have to: (Disagree) 1 2 3 4 5 6 7 (Agree)

49. Taking medical photographs is useful for me: (Disagree) 1 2 3 4 5 6 7 (Agree)

50. Taking medical photographs is valuable for me: (Disagree) 1 2 3 4 5 6 7 (Agree)

51. The surgeon is very dominant in our conversations (Disagree) 1 2 3 4 5 6 7 (Agree)

52. The surgeon lets me make decisions about my child (Disagree) 1 2 3 4 5 6 7 (Agree)

Please mark ONE BOX per question: 53. When I think about my child’s surgery I believe the following:

I can’t understand what is happening to them

I can’t manage the information the doctor gives me

The information the doctor gives me is clear to me

Despite my child’s surgery I am confident in my knowledge of how to manage their health

54. When I think about my child’s health I believe the following: I let others take care of my child’s health

I try to manage my child’s health but feel that I am not totally able to

I strictly follow the rules the doctor has given to me

I can manage my child’s health without the doctor present

 

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Did you do any of the following activities in relation to the images you took of the child’s wound?

55. Take the images? Yes ☐ No ☐ 56. Monitor the wound by looking at its colour, shape or size? Yes ☐ No ☐ 57. Purchase items for your child’s wound like dressings, creams or medication? Yes ☐ No ☐ 58. Change the dressing on your child’s wound? Yes ☐ No ☐ 59. Browsed online, read about or ask friends about your child’s wound? Yes ☐ No ☐ 60. Share and / or discuss the images with anyone in person, or on social media? Yes ☐ No ☐ 61. Join an online health group? Yes ☐ No ☐ 62. Attempt to self-diagnose based on symptoms or information gathered? Yes ☐ No ☐ 63. Send the images to medical staff? Yes ☐ No ☐ 64. Have unplanned contact with medical staff because of the images you sent? Yes ☐ No ☐ 65. Change any appointments with your surgeon based on symptoms? Yes ☐ No ☐ 66. Use the images for a non-health purpose? (e.g. story-telling, entertainment) Yes ☐ No ☐ Did you experience any of the following the emotions when taking or using the medical images?

30. Reassurance Yes ☐ No ☐ 31. Control Yes ☐ No ☐ 32. Disgust Yes ☐ No ☐ 33. Empowerment Yes ☐ No ☐ 34. Anxiousness Yes ☐ No ☐ 35. Embarrassment Yes ☐ No ☐ 36. Pride Yes ☐ No ☐ 37. Others?.........................................Yes ☐ No ☐ (please list as many as you can remember) Did you experience any of the following thoughts when taking or using the medical images?

38. A higher or lower confidence in the healthcare service? No Change ☐ Higher ☐ Lower ☐ 39. A higher or lower confidence in the doctor? No Change ☐ Higher ☐ Lower ☐ 40. A higher or lower sense of satisfaction with the service? No Change ☐ Higher ☐ Lower ☐ 41. A higher or lower sense of satisfaction in the doctor? No Change ☐ Higher ☐ Lower ☐ 42. A higher or lower sense of partnership with the doctor? No Change ☐ Higher ☐ Lower ☐ 43. A higher or lower sense of personal credibility? No Change ☐ Higher ☐ Lower ☐ 44. A higher or lower sense of responsibility? No Change ☐ Higher ☐ Lower ☐ 45. A higher or lower sense that your ‘voice’ was heard? No Change ☐ Higher ☐ Lower ☐ 46. A higher or lower sense of your ability to negotiate with the doctor? No Change ☐ Higher ☐ Lower ☐ 47. A higher or lower sense of trust in your doctor? No Change ☐ Higher ☐ Lower ☐ 48. A higher or lower sense of communication with your doctor? No Change ☐ Higher ☐ Lower ☐ 49. A higher or lower sense of motivation to continue treatment? No Change ☐ Higher ☐ Lower ☐ 50. A higher or lower sense of motivation to change a behaviour? No Change ☐ Higher ☐ Lower ☐ 51. A higher or lower sense of the fragility of the human body? No Change ☐ Higher ☐ Lower ☐ 52. Others?....................................................................................... No Change ☐ Higher ☐ Lower ☐ Thank you for your time. Please post this survey in the stamped self-addressed envelope provided and send back to

the researcher as soon as possible. If you have any problems please call Kara Burns 0414 294 967.

 

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APPENDIX J: Study 2 Interview Schedule

The impact of parent photographs on parental engagement in credence services

STUDY AIMS:

1. Determine how the general experience of the surgery was at LCCH 2. Identify if parents were able to take images based on training 3. Identify the motivators for the collection of patient generated health data for clinical care 4. Identify the inhibitors for the collection of patient generated health data for clinical care 5. Identify if taking images increased a parents involvement with your child’s illness. If yes, how? 6. Identify if the photographs affected the relationship between parent and child 7. Identify if the photographs affected the relationship between parent and the doctor 8. Identify any changes in existing measures of engagement 9. Identify any changes in behavioural outcomes of engagement 10. Identify any changes in emotional outcomes of engagement 11. Identify any changes in cognitive outcomes of engagement 12. Identify how PGHD can be used 13. Identify if when parents take photographs they feel engaged 14. Identify if when parents take photographs they feel empowered 15. Identify if there is a relationship between engagement and empowerment

INCLUSION CRITERIA:

Patients enrolled in the pilot trail

PROCESS:

A. THANK PARTICIPANT FOR THEIR TIME (PHONE INTERVIEWS) Hi, this is [Kara Burns] from the Queensland University of Technology. May I please speak with [participant name]?

[If no] Will [the participant] be available on this number at another time? [Record response] I will call again then. Thank you for your time. Goodbye. [End call]

[If yes, continue]

Hi [participant’s name; introduce own name]. I’m calling from the Queensland University of Technology. I am calling regarding the interview for the research project on your opinions about patient generated health data? [If yes, continue]

[If no] Will you be available on this number at another time? [Record response] I will call again then. Thank you for your time. Goodbye. [End call]

Have you received the information letter and consent form? [If yes, continue]

[If no] I am sorry to hear that. Would you like to continue with this interview or shall we reschedule so you can read through the material?

 

183

[Reschedule] Can I first confirm your email address again? [check with records] Thank you. I will send you a new information package about the study. For the interview, the researchers will be conducting interviews after the 1st of June. Would this be convenient for you?

[If no] Unfortunately those are the only days we will be conducting interviews at the moment. However, if any more sessions are scheduled, would you like me to contact you to see if one may be convenient for you? [If yes, record this]. Thank you very much for your time. Goodbye. [end call]

[If yes] Excellent. What day would be most convenient for you? [Record day]. And what time would be most convenient for you? [Record time]. Thanks [participant’s name]. Your interview is rescheduled for [date/time]. I will send you through a new information package. Thank you very much for your time. Goodbye [end call]

Continue Interview

[Move to section C] B. THANK PARTICIPANT FOR THEIR TIME (For all other interviews) We have come together today to discuss your opinions, experiences and feelings about patient generated health data. There are no right or wrong answers to the questions we’ll discuss. I’m simply interested in your opinions and experiences. This discussion is a totally confidential conversation. Any information I record and demographic information will not be kept by the Queensland University of Technology, and summary reports will not identify you in any way.

[Move to section C] C. EXPLAIN THE PROCESS OF THE INTERVIEW Today’s process involves me reading out two short scenarios and then us having a conversation to discuss your opinions, experiences and feelings about patient generated health data. To explain patient generated health data is any clinically relevant data a patient creates about himself or herself that can be used in healthcare. The data can be numbers, words or images for example a photo of a skin lesion. Today we are focusing on the visual form; a phenomenon I have called ‘medical selfies’.

I expect the complete process to take approximately 30 minutes. I would like to audio record today’s session, so that it can be transcribed for analysis purposes. When we have completed the study, a copy of the summary report will be made available to all participants.

It is also part University’s requirements that you complete the consent form. The document outlines that the research team will respect your confidentiality and that any information discussed here today will not be used to personally identify you in any publications or conference discussions.

Do you have any questions before we start? [Answer any] Ok I will start the interview now and switch on the recording device.

[Start audio recording]

D. OPENING DISCUSSION Aim: Introduction question to get the participant relaxed

Q1. Firstly thank you very much for participating in this study. How was the experience of your child’s surgery at LCCH?

E. INTERVIEW QUESTIONS

 

184

Aim: Identify if parents were able to take images based on training

Q2. Did you manage to take images of your child’s wound and send it to the doctors and can you describe how difficult it was for you based on the training provided

Aim: Identify the motivators for the collection of patient generated health data for clinical care

Q3. What would motivated you to take the images??

Aim: Identify the inhibitors for the collection of patient generated health data for clinical care

Q4. Were there any barriers to taking the images?

Aim: Identify if taking images increased a parents involvement with your child’s illness? If yes, how?

Q5. Identify if taking images increased a parents involvement with your child’s illness? If yes, how?

Aim: Identify if the photographs affected the relationship between parent and child?

Q6. How do you think the photographs affected the relationship between you and your child? Prompt: For example how did they affect trust or communication?

Aim: Identify if the photographs affected the relationship between parent and doctor?

Q7. How do you think the photographs affected the relationship between you and the doctor? Prompt: For example how did they affect trust or communication?

Aim: Identify any changes in existing measures of engagement

Q8. Between Survey 1 and Survey 2 there was a change in your statements and beliefs a. 1 (based on changes on Questionnaire Time 1 –Time 2 responses) b. 2 c. 3

Aim: Identify any changes in behavioural outcomes of engagement

Q9. Between Survey 1 and Survey 2 there was a change in your behaviour (list them) How did the medical photographs affect these activities?

a. 1 (based on changes on Questionnaire Time 1 –Time 2 responses) b. 2 c. 3

Aim: Identify any changes in emotional outcomes of engagement

Q10. When collecting and using the medical photographs you mentioned experiencing the following emotions (list them) How did the medical photographs affect these emotions?

a. 1 (based on changes on Questionnaire Time 2 responses) b. 2 c. 3

Aim: Identify any changes in cognitive outcomes of engagement

 

185

Q11. When collecting and using the medical photographs you mentioned experiencing the following thoughts (list them) How did the medical photographs affect these thoughts?

a. 1 (based on changes on Questionnaire Time 2 responses) b. 2 c. 3

Aim: Identify how PGHD can be used

Q12. How do you think these photos can be used? Probe for value using laddering techniques a. Why is XX important? b. What about XX is important? c. Why do you want XX? d. If you didn’t get XX what would you do?

Aim: Identify if parents felt engaged

Q13. When you take photographs do you feel engaged? Aim: Identify if parents felt empowered

Q14. When you take photographs do you feel empowered? Aim: Identify if there is a relationship between engagement and empowerment.

Q15. What do you think is the relationship to engagement and empowerment?

F. WOULD YOU LIKE TO AD ANYTHING ELSE, OR RAISE ANY OTHER POINTS? (5mins)

G. THANK PARTICIPANT FOR THEIR TIME [End audio recording]

 

186

Participant Scar01 ‐ No Images Scar02 Scar03 Scar04 Scar05

Demographics  Age 31‐40 41‐50 41‐50 51‐60 31‐40

Demographics  Childs Age 4 to 12 4 to 12 4 to 12 12 + 1 to 4

Demographics  Gender Female Female Male Female DegreeDemographics  Income Over 120,000 Over 120,000 80,000‐120,000 Over 120,000 80,000‐120,000

Demographics  Education Degree Degree Degree Degree Degree

Demographics  Postcode 4508 4059 4034 4171 4069

Heterogeneity Enduring Involvement No Change No Change No Change No Change No Change

Heterogeneity Situational  Involvement No Change No Change No Change Lower No Change

Heterogeneity Participation frontline worker No Change No Change No Change No Change No Change

Heterogeneity Participation organisation Lower No Change Lower Lower Higher

Heterogeneity Service Expertise No Change No Change No Change No Change No Change

Heterogeneity Technical Expertise No Change No Change No Change No Change No Change

Heterogeneity Self Efficacy No Change No Change No Change No Change No Change

Heterogeneity Volitional Control Lower No Change Lower No Change Lower

Heterogeneity Quality No Change No Change No Change No Change Higher

Heterogeneity Satisfaction No Change No Change No Change No Change Higher

Heterogeneity Situational Motivation 1 ‐ Important No Change No Change No Change No Change No Change

Heterogeneity Situational Motivation 2 ‐ Have to No Change Higher No Change No Change Lower

Heterogeneity Attitude Towards Act 1 Useful No Change Lower No Change No Change Higher

Heterogeneity Attitude Towards Act 2 Valuable No Change No Change No Change No Change Higher

Heterogeneity Communication Dominant No Change No Change No Change No Change No Change

Heterogeneity Communication Affiliative No Change No Change No Change No Change No Change

Engagement Patient Health Engagement Scale 1 Lower No Change No Change No Change No Change

Engagement Patient Health Engagement Scale 2 No Change No Change No Change No Change Higher

Behaviour Change Take images at home No Yes ‐ New No Yes ‐ New Yes ‐ New

Behaviour Change Monitor the wound No Yes ‐ New Yes ‐ New Yes ‐ New No

Behaviour Change Buy wound dressings / creams No No No No No

Behaviour Change Change dressing No No No No No

Behaviour Change Browse online, read about, asked friends about wound Yes ‐ Not UndertakeYes ‐ Not Undertake No No Yes ‐ Not Undertak

Behaviour Change Shared images with others No No Yes ‐ New No Yes ‐ New

Behaviour Change Join an online health group Yes ‐ Not UndertakeNo No No No

Behaviour Change Attempt to self‐diagnose No Yes ‐ Not Undertake Yes ‐ New No No

Behaviour Change Sent Images to medical staff No Yes ‐ New Yes ‐ New No Yes ‐ New

Behaviour Change Contact medical staff No No No No No

Behaviour Change Change appointments No No No No No

Behaviour Change Use images for a non‐health purpose Yes ‐ Not UndertakeNo No No No

Behaviour Change Other No No No No No

Emotions Reassurance No No Yes Yes Yes

Emotions Control No No Yes Yes Yes

Emotions Disgust No No No No No

Emotions Empowerment No No Yes Yes Yes

Emotions Anxiousness Yes No No No No

Emotions Embarrassment No No No No No

Emotions Pride No No No No No

Emotions Other ‐ Helpful No No No Yes ‐ helpful No

Thoughts Confidence in the healthcare service Higher No Change Higher No Change No Change

Thoughts Confidence in the doctor Higher No Change Higher Higher Higher

Thoughts Satisfaction with the service Higher No Change Higher Higher Higher

Thoughts Satisfaction in the doctor No Change No Change Higher Higher Higher

Thoughts Partnership with the doctor Higher Higher No Change No Change No Change

Thoughts Sense of personal credibility No Change Higher No Change No Change No Change

Thoughts Sense of responsibility Higher Higher Higher No Change Higher

Thoughts Sense that your ‘voice’ was heard? No Change Higher Higher No Change No Change

Thoughts Ability to negotiate with the doctor No Change No Change Higher No Change No Change

Thoughts Sense of trust in your doctor No Change No Change No Change Higher No Change

Thoughts Ability to communicate with your doctor No Change Higher No Change No Change No Change

Thoughts Motivation to continue treatment No Change No Change No Change No Change No Change

Thoughts Motivation to do medical photography in the future No Change No Change No Change No Change No Change

Thoughts Sense of the fragility of the human body No Change No Change No Change No Change No Change

Thoughts Other ‐ Self‐Confidence No Change No Change No Change No Change No Change

Interview Qt Reported Engagement No Yes Yes Yes Yes

Interview Qt Reported Empowerment No No Yes Yes Yes

Interview Qt Are Engagement / Empowerment linked? No No No Yes Yes

Participant Scar01 ‐ No Images Scar02 Scar03 Scar04 Scar05

Interview time 1.042361111 1.115972222 2.03125 1.245138889 1.109722222

APPENDIX K: Questionnaire Results (T1-T2 differences)

 

187

Participant Scar06 Scar07 No Image Scar08 Scar09 Scar10

Demographics  Age 41‐50 31‐40 41‐50 61‐70 41‐50

Demographics  Childs Age 4 to 12 4 to 12 4 to 12 12 + 12 +

Demographics  Gender Female Female Female Male Female

Demographics  Income Over 120,000 80,000‐120,000 30,001‐50,000 Over 120,000 80,000‐120,000

Demographics  Education Over 120,000 TAFE TAFE Post Graduate Post Graduate

Demographics  Postcode 4122 4503 4213 4061 4010

Heterogeneity Enduring Involvement Lower No Change No Change No Change No Change

Heterogeneity Situational  Involvement Lower No Change No Change No Change No Change

Heterogeneity Participation frontline worker Lower No Change No Change No Change No Change

Heterogeneity Participation organisation Lower No Change Lower No Change No Change

Heterogeneity Service Expertise No Change No Change No Change No Change No Change

Heterogeneity Technical Expertise Higher No Change No Change Higher No Change

Heterogeneity Self Efficacy Higher Higher No Change No Change No Change

Heterogeneity Volitional Control Higher No Change No Change No Change No Change

Heterogeneity Quality No Change No Change No Change No Change No Change

Heterogeneity Satisfaction No Change No Change Lower No Change No Change

Heterogeneity Situational Motivation 1 ‐ Important No Change Lower No Change No Change No Change

Heterogeneity Situational Motivation 2 ‐ Have to No Change Higher No Change Higher Higher

Heterogeneity Attitude Towards Act 1 Useful No Change No Change No Change No Change No Change

Heterogeneity Attitude Towards Act 2 Valuable Higher No Change No Change No Change No Change

Heterogeneity Communication Dominant No Change No Change No Change Lower No Change

Heterogeneity Communication Affiliative No Change No Change No Change Higher Higher

Engagement Patient Health Engagement Scale 1 No Change No Change Lower Higher Lower

Engagement Patient Health Engagement Scale 2 Lower No Change Lower No Change Lower

Behaviour Change Take images at home No Yes ‐ New No Yes ‐ New Yes ‐ New

Behaviour Change Monitor the wound No Yes ‐ Not UndertNo Yes ‐ Not Undertaken No

Behaviour Change Buy wound dressings / creams No Yes ‐ Not UndertNo Yes ‐ Not Undertaken Yes ‐ Not Undertake

Behaviour Change Change dressing No Yes ‐ Not Undert Yes ‐ Not Undert Yes ‐ Not Undertaken Yes ‐ Not Undertake

Behaviour Change Browse online, read about, asked friends about wound Yes ‐ Not Undertak Yes ‐ Not Undert Yes ‐ Not Undert Yes ‐ Not Undertaken No

Behaviour Change Shared images with others Yes ‐ Not Undertak Yes ‐ Not Undert Yes ‐ Not Undert No No

Behaviour Change Join an online health group No Yes ‐ Not Undert No No

Behaviour Change Attempt to self‐diagnose Yes ‐ New Yes ‐ New Yes ‐ Not Undertaken No

Behaviour Change Sent Images to medical staff Yes ‐ New No Yes ‐ New Yes ‐ Not Undertake

Behaviour Change Contact medical staff No No No No

Behaviour Change Change appointments No No No No

Behaviour Change Use images for a non‐health purpose No No No No

Behaviour Change Other No No No No

Emotions Reassurance Yes Yes Yes No Yes

Emotions Control Yes Yes Yes Yes No

Emotions Disgust No No No No No

Emotions Empowerment No No Yes No Yes

Emotions Anxiousness No No No No No

Emotions Embarrassment No No No No No

Emotions Pride No No No No No

Emotions Other ‐ Helpful Yes No Yes No No

Thoughts Confidence in the healthcare service No Change No Change Higher No Change Higher

Thoughts Confidence in the doctor No Change No Change Higher No Change Higher

Thoughts Satisfaction with the service Higher Higher Higher No Change Higher

Thoughts Satisfaction in the doctor No Change No Change Higher No Change Higher

Thoughts Partnership with the doctor No Change Higher Higher No Change Higher

Thoughts Sense of personal credibility No Change No Change Higher No Change No Change

Thoughts Sense of responsibility Higher Higher Higher Higher No Change

Thoughts Sense that your ‘voice’ was heard? No Change Higher Higher No Change Higher

Thoughts Ability to negotiate with the doctor No Change No Change No Change No Change No Change

Thoughts Sense of trust in your doctor No Change No Change Higher No Change No Change

Thoughts Ability to communicate with your doctor No Change Higher Higher No Change Higher

Thoughts Motivation to continue treatment No Change No Change Higher No Change Higher

Thoughts Motivation to do medical photography in the future No Change No Change Higher Higher Higher

Thoughts Sense of the fragility of the human body Higher No Change Higher No Change No Change

Thoughts Other ‐ Self‐Confidence Higher No Change Higher No Change No Change

Interview Qt Reported Engagement Yes Yes Yes Yes Yes

Interview Qt Reported Empowerment Yes Yes Yes No Yes

Interview Qt Are Engagement / Empowerment linked? Yes No Yes No Yes

Participant Scar06 Scar07 No Image Scar08 Scar09 Scar10

Interview time 0.952083333 0.561111111 1.268055556 0.750694444 1.522222222

 

188

Participant Scar11 ‐ No imagScar12 Scar13 Scar15 Scar16 Scar17

Demographics  Age 31‐40 41‐50 41‐50 41‐50 31‐40 41‐50

Demographics  Childs Age 1 to 4 12 + 4 to 12 12 + 4 to 12 4 to 12

Demographics  Gender Female Female Male Female Female Female

Demographics  Income 50,000‐80,000 Over 120,000 80,000‐120,000 80,000‐120,00080,000‐120,000 50,000‐80,000

Demographics  Education High School Degree High School Degree Post Graduate Degree

Demographics  Postcode 4078 4031 4510 4305 4152 4070

Heterogeneity Enduring Involvement No Change No Change No Change No Change Lower Higher

Heterogeneity Situational  Involvement No Change No Change No Change Lower No Change No Change

Heterogeneity Participation frontline worker No Change No Change No Change No Change Lower No Change

Heterogeneity Participation organisation Lower Higher No Change No Change Lower No Change

Heterogeneity Service Expertise Lower No Change No Change No Change No Change No Change

Heterogeneity Technical Expertise No Change No Change No Change No Change No Change No Change

Heterogeneity Self Efficacy No Change Higher Higher No Change No Change No Change

Heterogeneity Volitional Control No Change No Change No Change No Change No Change No Change

Heterogeneity Quality No Change No Change No Change No Change No Change No Change

Heterogeneity Satisfaction No Change No Change No Change No Change No Change No Change

Heterogeneity Situational Motivation 1 ‐ Important No Change No Change No Change No Change No Change No Change

Heterogeneity Situational Motivation 2 ‐ Have to Higher No Change No Change No Change No Change No Change

Heterogeneity Attitude Towards Act 1 Useful No Change Lower Lower No Change No Change No Change

Heterogeneity Attitude Towards Act 2 Valuable No Change No Change No Change No Change No Change No Change

Heterogeneity Communication Dominant No Change Lower No Change Higher Lower No Change

Heterogeneity Communication Affiliative No Change No Change No Change No Change No Change No Change

Engagement Patient Health Engagement Scale 1 Higher No Change No Change No Change Higher No Change

Engagement Patient Health Engagement Scale 2 Lower No Change Lower No Change Lower No Change

Behaviour Change Take images at home Yes ‐ Not Undert Yes ‐ New Yes ‐ New Yes ‐ New No No

Behaviour Change Monitor the wound No Yes ‐ New No No No No

Behaviour Change Buy wound dressings / creams Yes ‐ Not Undert Yes ‐ New No No No No

Behaviour Change Change dressing Yes ‐ Not Undert Yes ‐ New No No No No

Behaviour Change Browse online, read about, asked friends about wound Yes ‐ Not UndertNo No No No Yes ‐ Not Undert

Behaviour Change Shared images with others Yes ‐ New No Yes ‐ New Yes ‐ New No Yes ‐ New

Behaviour Change Join an online health group No No No No No No

Behaviour Change Attempt to self‐diagnose Yes ‐ Not UndertNo No No Yes ‐ Not UndertaNo

Behaviour Change Sent Images to medical staff Yes ‐ New Yes ‐ New Yes ‐ New Yes ‐ New Yes ‐ New No

Behaviour Change Contact medical staff No No No No No No

Behaviour Change Change appointments No No No No No No

Behaviour Change Use images for a non‐health purpose No Yes ‐ New No No No No

Behaviour Change Other No No No No No No

Emotions Reassurance No No Yes Yes No Yes

Emotions Control No No Yes No No Yes

Emotions Disgust No No No No No No

Emotions Empowerment No No No Yes No Yes

Emotions Anxiousness No No No Yes No No

Emotions Embarrassment No No No No No No

Emotions Pride Yes No No No No No

Emotions Other ‐ Helpful No No No No No No

Thoughts Confidence in the healthcare service Higher No Change Higher No Change Higher Higher

Thoughts Confidence in the doctor No Change No Change Higher No Change Higher No Change

Thoughts Satisfaction with the service No Change No Change No Change No Change Higher Higher

Thoughts Satisfaction in the doctor No Change No Change Higher No Change Higher No Change

Thoughts Partnership with the doctor No Change No Change No Change No Change No Change Higher

Thoughts Sense of personal credibility No Change No Change No Change Higher No Change Higher

Thoughts Sense of responsibility No Change No Change Higher Higher Higher Higher

Thoughts Sense that your ‘voice’ was heard? No Change No Change No Change No Change Higher Higher

Thoughts Ability to negotiate with the doctor No Change No Change No Change No Change No Change No Change

Thoughts Sense of trust in your doctor No Change No Change No Change No Change No Change No Change

Thoughts Ability to communicate with your doctor No Change No Change No Change No Change Higher Higher

Thoughts Motivation to continue treatment Higher Higher No Change Higher Higher No Change

Thoughts Motivation to do medical photography in the future No Change Higher Higher Higher Higher Higher

Thoughts Sense of the fragility of the human body No Change No Change No Change Higher Lower No Change

Thoughts Other ‐ Self‐Confidence Higher Higher No Change Higher Higher Higher

Interview Qt Reported Engagement No Yes Yes Yes Yes Yes

Interview Qt Reported Empowerment No No Yes Yes Yes Yes

Interview Qt Are Engagement / Empowerment linked? No No Yes Yes Yes Yes

Participant Scar11 ‐ No imagScar12 Scar13 Scar15 Scar16 Scar17

Interview time 0.7625 0.49375 0.998611111 0.995833333 0.904166667 1.095138889

 

189

Participant Scar18 Scar19 Scar21 Scar23 Scar25

Demographics  Age 51‐60 18‐30 41‐50 31‐40 41‐50

Demographics  Childs Age 4 to 12 1 to 4 12 + 4 to 12 4 to 12

Demographics  Gender Male Female Female Female Male

Demographics  Income Over 120,000 Under 30,000 30,001‐50,000 50,000‐80,000 80,000‐120,000

Demographics  Education TAFE TAFE Degree High School Degree

Demographics  Postcode 4171 4551 4165 4179 4105

Heterogeneity Enduring Involvement No Change No Change Higher No Change No Change

Heterogeneity Situational  Involvement No Change No Change No Change No Change No Change

Heterogeneity Participation frontline worker No Change Lower No Change No Change No Change

Heterogeneity Participation organisation No Change No Change Lower No Change No Change

Heterogeneity Service Expertise No Change No Change Lower No Change No Change

Heterogeneity Technical Expertise No Change Higher No Change No Change No Change

Heterogeneity Self Efficacy No Change No Change No Change No Change Higher

Heterogeneity Volitional Control No Change No Change No Change No Change No Change

Heterogeneity Quality No Change No Change No Change No Change No Change

Heterogeneity Satisfaction No Change No Change No Change No Change No Change

Heterogeneity Situational Motivation 1 ‐ Important No Change No Change No Change No Change Higher

Heterogeneity Situational Motivation 2 ‐ Have to No Change No Change Higher Higher Lower

Heterogeneity Attitude Towards Act 1 Useful Higher No Change No Change No Change Higher

Heterogeneity Attitude Towards Act 2 Valuable Higher No Change No Change No Change Higher

Heterogeneity Communication Dominant No Change No Change No Change Higher No Change

Heterogeneity Communication Affiliative No Change No Change No Change No Change No Change

Engagement Patient Health Engagement Scale 1 No Change Higher No Change No Change Higher

Engagement Patient Health Engagement Scale 2 No Change Higher Higher No Change No Change

Behaviour Change Take images at home Yes ‐ New Yes ‐ New No No Yes ‐ New

Behaviour Change Monitor the wound Yes ‐ New Yes ‐ New No No No

Behaviour Change Buy wound dressings / creams No No No No No

Behaviour Change Change dressing No No No Yes ‐ Not UndertakeNo

Behaviour Change Browse online, read about, asked friends about wound No No Yes ‐ Not UndertakeNo Yes ‐ Not Undertaken

Behaviour Change Shared images with others Yes ‐ New Yes ‐ New No No Yes ‐ New

Behaviour Change Join an online health group No No Yes ‐ Not UndertakeNo No

Behaviour Change Attempt to self‐diagnose Yes ‐ New No No No Yes ‐ Not Undertaken

Behaviour Change Sent Images to medical staff Yes ‐ New Yes ‐ New Yes ‐ New Yes ‐ New Yes ‐ New

Behaviour Change Contact medical staff No No No No No

Behaviour Change Change appointments No No No No No

Behaviour Change Use images for a non‐health purpose No No Yes ‐ Not UndertakeNo No

Behaviour Change Other No No No No No

Emotions Reassurance Yes Yes Yes Yes Yes

Emotions Control No Yes Yes No No

Emotions Disgust No No No No No

Emotions Empowerment No No Yes Yes No

Emotions Anxiousness No No No No No

Emotions Embarrassment No No No No No

Emotions Pride No No No No No

Emotions Other ‐ Helpful No Yes No Yes Yes

Thoughts Confidence in the healthcare service No Change No Change Higher Higher Higher

Thoughts Confidence in the doctor No Change Higher No Change No Change No Change

Thoughts Satisfaction with the service Higher Higher Higher No Change Higher

Thoughts Satisfaction in the doctor No Change Higher Higher No Change Higher

Thoughts Partnership with the doctor No Change Higher No Change Higher Higher

Thoughts Sense of personal credibility No Change Higher No Change No Change No Change

Thoughts Sense of responsibility No Change Higher Higher Higher Higher

Thoughts Sense that your ‘voice’ was heard? Higher Higher Higher Higher Higher

Thoughts Ability to negotiate with the doctor No Change Higher No Change Higher Higher

Thoughts Sense of trust in your doctor No Change Higher No Change No Change Higher

Thoughts Ability to communicate with your doctor No Change Higher No Change Higher Higher

Thoughts Motivation to continue treatment No Change Higher Higher Higher Higher

Thoughts Motivation to do medical photography in the future No Change Higher Higher No Change Higher

Thoughts Sense of the fragility of the human body No Change Higher No Change Higher No Change

Thoughts Other ‐ Self‐Confidence Higher No Change Higher No Change No Change

Interview Qt Reported Engagement Yes Yes Yes Yes Yes

Interview Qt Reported Empowerment No Yes Yes Yes Yes

Interview Qt Are Engagement / Empowerment linked? No Yes Yes Yes Yes

Participant Scar18 Scar19 Scar21 Scar23 Scar25

Interview time 1.055555556 1.058333333 0.808333333 1.35625 0.808333333

 

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Participant Scar26 Scar27 Scar28 No Images Scar29 Scar30

Demographics  Age 41‐50 41‐50 51‐60 31‐40 41‐50

Demographics  Childs Age 4 to 12 12 + 4 to 12 4 to 12 4 to 12

Demographics  Gender Female Male Female Female Female

Demographics  Income 30,001‐50,000 80,000‐120,000 30,001‐50,000 30,001‐50,000 30,001‐50,000

Demographics  Education Degree Degree High School Degree Degree

Demographics  Postcode 4053 4036 4073 4054 4178

Heterogeneity Enduring Involvement No Change No Change No Change Higher No Change

Heterogeneity Situational  Involvement No Change No Change No Change Higher No Change

Heterogeneity Participation frontline worker Higher No Change No Change Higher No Change

Heterogeneity Participation organisation No Change No Change No Change No Change No Change

Heterogeneity Service Expertise No Change No Change No Change No Change No Change

Heterogeneity Technical Expertise No Change No Change No Change No Change No Change

Heterogeneity Self Efficacy No Change No Change No Change No Change No Change

Heterogeneity Volitional Control Higher No Change No Change No Change No Change

Heterogeneity Quality No Change No Change No Change No Change No Change

Heterogeneity Satisfaction No Change No Change No Change No Change No Change

Heterogeneity Situational Motivation 1 ‐ Important No Change No Change No Change No Change No Change

Heterogeneity Situational Motivation 2 ‐ Have to No Change No Change No Change No Change No Change

Heterogeneity Attitude Towards Act 1 Useful Lower No Change No Change No Change No Change

Heterogeneity Attitude Towards Act 2 Valuable Lower No Change No Change No Change No Change

Heterogeneity Communication Dominant No Change No Change No Change No Change No Change

Heterogeneity Communication Affiliative No Change No Change No Change No Change No Change

Engagement Patient Health Engagement Scale 1 No Change No Change Higher No Change No Change

Engagement Patient Health Engagement Scale 2 No Change No Change No Change No Change No Change

Behaviour Change Take images at home Yes ‐ New No No No No

Behaviour Change Monitor the wound No No Yes ‐ New No No

Behaviour Change Buy wound dressings / creams No No No No No

Behaviour Change Change dressing No No No No No

Behaviour Change Browse online, read about, asked friends about wound Yes ‐ Not Undertaken No Yes ‐ New Yes ‐ Not UndertakYes ‐ Not Undertake

Behaviour Change Shared images with others Yes ‐ New No No No No

Behaviour Change Join an online health group No No No No No

Behaviour Change Attempt to self‐diagnose No No No Yes ‐ Not UndertakNo

Behaviour Change Sent Images to medical staff Yes ‐ New Yes ‐ New No Yes ‐ New No

Behaviour Change Contact medical staff No No No No No

Behaviour Change Change appointments No No No Yes ‐ Not UndertakNo

Behaviour Change Use images for a non‐health purpose No No No Yes ‐ Not UndertakNo

Behaviour Change Other No No No No No

Emotions Reassurance Yes Yes Yes Yes Yes

Emotions Control Yes No No No No

Emotions Disgust No No No No No

Emotions Empowerment No No No No No

Emotions Anxiousness No No No No Yes

Emotions Embarrassment No No No No No

Emotions Pride Yes No No No No

Emotions Other ‐ Helpful No No No Yes No

Thoughts Confidence in the healthcare service No Change No Change No Change No Change No Change

Thoughts Confidence in the doctor Higher No Change No Change No Change No Change

Thoughts Satisfaction with the service Higher No Change No Change No Change No Change

Thoughts Satisfaction in the doctor No Change No Change No Change No Change No Change

Thoughts Partnership with the doctor Higher No Change No Change No Change No Change

Thoughts Sense of personal credibility No Change No Change No Change No Change No Change

Thoughts Sense of responsibility Higher No Change No Change Higher Higher

Thoughts Sense that your ‘voice’ was heard? No Change No Change Higher No Change Higher

Thoughts Ability to negotiate with the doctor No Change No Change Higher No Change Higher

Thoughts Sense of trust in your doctor Higher No Change No Change No Change No Change

Thoughts Ability to communicate with your doctor Higher No Change No Change No Change No Change

Thoughts Motivation to continue treatment Higher Higher Higher No Change Higher

Thoughts Motivation to do medical photography in the future Higher No Change No Change Higher Higher

Thoughts Sense of the fragility of the human body No Change No Change No Change Higher Higher

Thoughts Other ‐ Self‐Confidence No Change No Change No Change Higher No Change

Interview Qt Reported Engagement Yes Yes Yes Yes No

Interview Qt Reported Empowerment No No No No No

Interview Qt Are Engagement / Empowerment linked? No No Yes No No

Participant Scar26 Scar27 Scar28 No Images Scar29 Scar30

Interview time 1.116666667 0.781944444 0.6625 1.160416667 0.880555556

 

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APPENDIX L: Codebook 2 Axial Coding for Use Attributes, Consequences and Value

1. Attribute (A) 2. Consequence (C) 3. Value (V)

Quotes

Parent 01

1. Resource Management (A) 2. Partnership with Providers (C) 3. Emotional Value (V)

1. like I said before it [the photography] takes away the fact of “oh I'm going to have to pay to go to the doctor” ...[instead it is] I've sent the photos off and I've got a reply.

2. I think it gives you more faith in the whole health care system and in the surgeons and in the belief that they are just there for while you are in hospital they are there for when you leave hospital as well.

3. I would just decrease anxiety. It would make you feel like you're doing everything you can to help your child get better.

1. Increased awareness (A) 2. Partnership with Providers (C) 3. Emotional Value (V)

1. I mean actually looking at the image to go “oh yes that's infected”, or “you need to go to a doctor” or “you might need to change that dressing” or something like that

2. I mean someone to call on and send images to and know that person is a trained professional and you're getting correct advice rather than going onto Google and typing in.

3. It just makes a happier household here. So to decrease the anxiety of that sort of thing at home just means that everyone is happier.

1. Co-creation (A) 2. Perceptions of Self (C) 3. Transactional Value (V)

1. The opportunity to send those pictures and assess the risk of infection and things like that to a trained professional have a look like rather than making your own judgment or googling

2. Well that sense of responsibility that you are doing everything you can for your child 3. I think that any valuable resource because it means that you know you are kept informed about your child's health not just from

your perspective but from them medical professionals

1. Increased Awareness (A) 2. Emotional Regulation (C) 3. Transactional Value (V)

1. like I've said it just keeps you informed about what you're looking have on your child with incisions 2. It keeps your mind at rest 3. If I were to get a text message back saying no those red marks are fine … then I would be able to pass that information onto my

child.

Parent 02

1. Self-monitoring (A) 2. Emotional Regulation (C) 3. Functional Value (V)

1. Taking the photos I was able to flick back to the previous photos and look at how it was changing. Whereas when you don't have photos you can't quite remember how it's healing.

2. I guess that's positive. Makes you feel positive that it is healing in the way that it should…Happy with the progress you know…. reassured

3. We just learned that the healing is working the way that it should.

1. Medical Research (A) 2. Partnership with Providers (C) 3. Efficiency Value (V)

1. I just thought it [the photography] would be helpful for [other] people 2. Patients feel more in touch with the hospital once they leave after the surgery 3. If there was an issue that things weren't healing properly that they could be addressed more quickly because obviously when you

first go into a big public hospital free public hospital, it's always my experience being that you get there and you can wait hours and hours.

1. Resource Management (A) 2. Partnership with Providers (C)

1. I guess if there had been a problem, I guess being able to send the photos would have seen the photos would get me in touch with the doctor more effectively and just try to ring the hospital

 

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3. Efficiency Value (V) 2. So I could have said to a doctor hey look at this picture, I don't think it's healing the way it should be. What should we do about this? Should we come in and get come back to the hospital?

3. That would probably be quicker than walking up into emergency or whatever and waiting six hours whatever.

1. Communication (A) 2. Service & Experience Optimisation (C) 3. Transactional Value (V)

1. You have another link on guessing [what is wrong]. I'm assuming if you sent an e-mail with the message I'm assuming that the doctor would get that message

2. When you're in a big public hospital and you know the doctors see so many people every day and I guess it's hard for follow up. 3. It's a bit more of a personal approach. Well little tiny bit more personal.

Parent 03

1. Evidence (A) 2. Service & Experience Optimisation (C) 3. Functional Value (V)

1. You can't deny a picture can you? If you are taking a picture and there is a problem what’s led up to that can be there. 2. If you said he played on the jungle gym and he ripped his scar you're not going to have you're not going to be wasting anybody's

time. 3. You can get rid of a whole bunch of other diagnoses. If that scar went bad again and you thought you got those photos that have

been logged there you can get rid of 90 percent of the other possibilities

1. Supported Autonomy (A) 2. Service & Experience Optimisation (C) 3. Efficiency Value (V)

1. It [photography] definitely made you feel that, even though it's just the procedure itself felt as if, you know people were helping you assess the scar as well. So it sort of creates a feeling you are being backed up by the doctor.

2. I think it's just means a faster way. Imagine if we just went in there and scars come apart and it been like 15 days since he left the hospital. And then we go to the doctor and he says “well the scars come apart,” and we will say “well it's from an impact,” and straight away they can be like “well obviously he needs to be fixed.”

3. So I just think it's been in that respect it's helpful for the family because it just gets better. He gets a better treatment response. A better faster treatment response based on more facts.

1. Altruism (A) 2. Emotional Buoyancy (C) 3. Emotional Value (V)

1. Well you know, we're not pretty, sort of open to assisting society 2. It’s just a general sense of social responsibility I think more than anything. 3. You do feel as if maybe someday you know you know what your child is going through it can be used in a positive way maybe to

help to help other families you know

1. Reassurance (A) 2. Partnership with Providers (C) 3. Efficiency Value (V)

1. I think there's a reassurance in that respect as well, knowing that someone else might be looking at the images. 2. You know so I think any kind of reassurance is going to help rebuild the trust between a doctors any future problems we have.

You know it makes you just feel that there's someone out there. 3. To make the system better.... It’s good to see you know the processes that are involved in making things a bit better.

Parent 04

1. Self-monitoring (A) 2. Service & Experience Optimisation (C) 3. Emotional Value (V)

1. I also was able to look to see what was going on and monitor whether I thought there was any infection or anything like that. 2. She knows that she was looking and that there was something after the hospital. 3. You know you can feel a bit vulnerable because you think she's actually not better by the time she leaves hospital or she's just not

sick enough to need to be in the hospital.

1. Increased Awareness (A) 2. Emotional Regulation (C) 3. Functional Value (V)

1. We looked back at the photographs after taken a few and we were able to see a significant difference between day one and day it was six, where I actually probably by day six found me taking photographs might have forgotten how bad she looked on day one

2. It gave me confidence and reassurance. I was able to reassure her [the patient] too she was able to be reassured as well 3. I was able to say well in the short time since we left hospital you have actually improved quite a lot and here is the evidence.

1. Diagnosis & Management (A) 2. Perceptions of Self (C) 3. Functional Value (V)

1. In this particular case it would have been diagnosing is anything was going wrong post-operatively 2. I knew I was getting a record that if something was going well I'd be able to hopefully show people say “look that was a problem

with it” or “look this is the history what does it tell you?” 3. Obviously I would like to keep my child healthy and hopefully it will contribute to her being healthier.

 

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1. Communication (A) 2. Empowerment (C) 3. Emotional Value (V)

1. And the visuals [photographs] are much easier for people to communicate and to realize and to get a memory of what's happening. 2. It makes us feel a level of control 3. It makes you feel better. Make me feel less upset than I probably would have done before if I didn't have the knowledge.

Parent 05

1. Co-creation (A) 2. Empowerment (C) 3. Self-determination Value (V)

1. When your child’s sick, you rely on the medical help and the doctors to convince you that everything is going to be OK. 2. I wasn’t sure what was going to happen to my child, and once the operation was done I felt that I was back in control. She was

back in her normal health. 3. We love the child and we need to know how the child is being treated and so on

1. Evidence (A) 2. Perceptions of Self (C) 3. Self-determination Value (V)

1. It’s good for my own record and I think it’s a good idea. 2. You know when they grow up, to have our own record about what they have gone through in their own lifetime. And that’s what

happened to her appendix and it is good to have it as a family record. 3. Well it’s good for them [the child] when they have grown up, what happened in the past.

1. Anxiety (A) 2. Emotional Regulation (C) 3. Functional Value (V)

1. Before the surgery we felt a bit worried that my daughter would have her appendix removed and we don’t know how big the cut will be and what it is going to look like and so on

2. When we saw the wound we were relieved that is was just a small cut and um yeah. I feel assured she is in good hands. 3. Ok that she will be normal, before she was in excruciating pain, and the fact that after she is better and improving and the wounds

have healed nicely.

Parent 06

1. Altruism (A) 2. Emotional Regulation (C) 3. Emotional Value (V)

1. Well, for the purpose of the study because I think it's helpful and that was really my primary motivation for it 2. It's just reassuring to know that what I was thinking - I was thinking that there was nothing, that his wound was healing really well 3. It makes me feel confident and it makes me know that it - yeah, it's not a worry really, that everything is okay

1. Self-monitoring (A) 2. Empowerment (C) 3. Self-determination (V)

1. It was a shared thing that we could sit down and talk about it and it made me ensure that I was checking his wound 2. I think it was spending time together and him feeling confident that I'm able to give him the care that he needs 3. That I'll respond to them in a way that will ensure that they are feeling okay and that their health needs are being met.

1. Self-monitoring (A) 2. Self-management (C) 3. Self-determination (V)

1. I've monitored it more than I probably would have had I not had to take the photos. 2. It was really good for me because otherwise my management of time can be quite poor sometimes and I would - may forget to - I

probably would have forgotten to check his wound 3. It's a bit of parent guilt, me thinking I should have done that, I could have a done a better job.

1. Responsibility (A) 2. Partnership with Providers (C) 3. Emotional Value (V)

1. I didn't foresee the fact that it increased my accountability 2. That five minute or two minute email straight to the doctor, do you know when [my son] can swim and then I've got a response to

that. 3. I knew that I was thinking that it was okay that he could go for a swim but just to have a medical professional reassure me that my

decision and my thinking was on queue with them

Parent 07

1. Self-monitoring (A) 2. Emotional Regulation (C) 3. Emotional Value (V)

1. It is in my interest so I have before and after shots and go back and compare. 2. It just it's good to have comparisons for peace of mind. 3. The value I suppose it gives me peace of mind if I need to if I feel I need to get better medical advice

1. Reassurance (A) 2. Empowerment (C) 3. Emotional Value (V)

1. I suppose it's just peace of mind having the photos 2. You feel a little bit more in control knowing that you're having something to do with controlling how his health is getting better or

deteriorating in a way. 3. Just gives you, more, again, it gives back to peace of mind that it is heading in the right direction

1. Communication (A) 1. The photos could be used to show the doctor if we needed to show him.

 

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2. Service & Experience Optimisation (C) 3. Emotional Value (V)

2. I suppose you needed to go back to showing it will you email them or to the hospital the GP or someone if you weren't comfortable with what you would seeing.

3. It's just reassuring that you're heading in the right direction with recovery.

1. Responsibility (A) 2. Self-management (C) 3. Functional Value (V)

1. It [the photography] sort of makes you feel a little bit more accountable for, that you're helping the photos make you feel more accountable for helping my son to get on his road to recovery

2. That you're making the right choices to better health 3. Again that you're making the right choices to move towards better health

Parent 08

1. Co-creation (A) 2. Perceptions of Self (C) 3. Transactional Value (V)

1. When I went to take the photos it really showed up in the photo about the direction that it was sitting. And then I could talk about it and I just got the nurse right away.

2. So each day even though I didn't have to take a photo every day I still checked it out every day. It made me a lot more aware of what I was taking photos of.

3. I think that they probably may take you a little bit more seriously because you said you were aware that you know 12 hours ago that wasn't there, or six hours ago that wasn't there, and then suddenly it was something like we have maybe a bit more respect for parents that are a bit more aware of the child's condition

1. Self-monitoring (A) 2. Improved Health Outcomes (C) 3. Transactional Value (V)

1. We could just keep an eye on that each day and any changes that you could pick up straight away 2. I think you know if I had left it 24 hours she might have been. Yeah she could have got really sick. If no one had picked it up. 3. We [the doctors] take you [parent], we take this seriously you know this what we're doing to help you and you know if there is any

changes, we're here as well. I think that was I think that was really valuable

1. Co-creation (A) 2. Empowerment (C) 3. Transactional Value (V)

1. I think you know the more aware that you are any changes when you've got a really sick kid the better it is for the staff, the staff are too busy to pick stuff up like that. I think they need the parents help because they don't have time to do everything.

2. I think when you work together you have more say in what happens with you with your child and you know 3. I think because if you feel under control in control of your own child health you can take a deep breath because if you find working

with them they're working with me.

1. Responsibility (A) 2. Perceptions of Self (C) 3. Transactional Value (V)

1. I think if you can take a bit more responsibility for the child's health and bring different things up [its good] because they don't know

2. So you can take extra responsibility and say this is what's changed. 3. Instead of just being another number, you have a bit more of a say, they sort of take it more seriously

1. Respect (A) 2. Emotional Regulation (C) 3. Self-determination (V)

1. I think you take them more seriously as well and trust them because they're taking you seriously 2. I'm just probably just a bit more peace of mind. 3. When to do it then you're willing to show those doctors that you know this is the story, she might not be able to talk for yourself

because she is too sick, but I will.

Parent 09

1. Co-creation (A) 2. Self-management of Health Condition (C) 3. Functional Value (V)

1. Well concerned about my child's health, so I would want to cooperate with a process that will help her 2. If I can aid, do something within my power to help detection of the potential infection and then you'd be ready to manage that I

will. 3. It helps with my daughters health

1. Medical Research (A) 2. Improved Health Outcomes (C) 3. Functional Value (V)

1. This research, this piece of research, you're going to help potentially help parents monitor the possibilities of infections post-operative and post discharge.

2. And that's you know advancing medical knowledge and is advancing you know critical treatment 3. Advancing clinical treatment, presumably health outcomes.

 

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Parent 10

1. Reassurance (A) 2. Partnership with Providers (C) 3. Efficiency Value (V)

1. Even as a fairly competent parent, you'd still need a bit of reassurance that there is nothing wrong. 2. Her incision points healed really well she's probably not even going to end up with a scar at all, but if something had come up I

knew that was that kind of backup, behind me. 3. It doesn't make me waste my resources it doesn't waste hospital resources by having to deal with an overly sensitive parent.

1. Co-creation (A) 2. Empowerment (C) 3. Emotional Value (V)

1. I suppose it made me feel part of that recovery space. So you know that is the management of a clinical issue doesn't and just because you're discharged. And I'm not clinical so you know I can only monitor and then ask somebody for help if I think there's a concern.

2. I guess it kind of helps me feel like I wasn't dependent on somebody else as much. 3. So I think that the value of this study the value of taking medical photos is that if you were worried parent that would provide

significantly more reassurance.

1. Resource Management (A) 2. Service & Experience Optimisation (C) 3. Efficiency Value (V)

1. I'm more than happy to participate in any research that will make things more efficient or save resources or help people catch things

2. If any of my children had to have more surgery and somebody said look we're only going to monitor you via medical photos that is fine.

3. the government haven't got so much money, so many resources. So if we can cut out the people if we can find ways more efficiently dealing with the people who only just need reassurance and don't need to you know take up time with doctors.

1. Evidence (A) 2. Improved Health Outcomes (C) 3. Emotional Value (V)

1. So the photos from a clinical point of view you're not turning around and saying “I think there's a problem,” you've got the ability to turn and say “this is what I'm observing.”

2. And the doctor can say yes there is a problem or no there's not a problem and this is why. 3. It takes the emotion out of it.

Parent 11

1. Resource Management (A) 2. Improved Health Outcomes (C) 3. Functional Value (V)

1. Just seeing the benefit for regional areas and patients that can’t get to a doctor or surgeon every day 2. it could really help (diagnosis and management) 3. It gives families who live in those areas, um, benefits that could help with wound management

1. Evidence (A) 2. Perceptions of Self (C) 3. Social Value (V)

1. Just that this was the photo we had taken in the hospital and it was only a couple of days old and his tummy still looked like that now.

2. Dad isn’t the type to go and visit in hospital, so to show him the significance of it [the injury] 3. So how he could see how strong his grandson was five days out from surgery

1. Data Sharing (A) 2. Social Support (C) 3. Social Value (V)

1. She was just my team leader and she was just asking how he was and I looked through photographs from hospital and that images was in there so I showed her that.

2. We talked a little but about key hole surgery. And how little the cuts were and how the scars shouldn’t be there for that long. 3. Just talking to her, not that I was worried, but her encouraging that the scars will be gone in couple of years, that was nice

1. Medical Research (A) 2. Improved Health Outcomes (C) 3. Functional Value (V)

1. Just proud that he went through it, and that he is a strong little boy and that he was part of something that might help other little kiddies.

2. I used to do veterinary nursing, and in the city where we has a medical research facility for animals, and we had to visit there. Even though what they were doing was pretty horrible they were doing things that were going to benefit a human life and it would be good to be part of something in a non-invasive way.

3. if there was other things that can be done to help that not use animals so much, or help cement the research they have done I think that is beneficial.

1. Self-monitoring (A) 2. Improved Health Outcomes (C)

1. It [the photography] helped me monitor it [the wound] a bit more 2. Well you will pick up whether it is infected or not, even though I'm sure she would've told me knowing my child.

 

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Parent 12

3. Functional Value (V) 3. Obviously her health is very important to me.

1. Medical Research (A) 2. Emotional Buoyancy (C) 3. Functional Value (V)

1. For research or whatever you guys want to do, but mainly research I suppose. 2. in assisting medical research I think it's very important participate where you can 3. You know medical research, better curing or prevention of infection post-surgery.

Parent 13

1. Self-monitoring (A) 2. Improved Health Outcomes (C) 3. Functional Value (V)

1. Well for me it was just it gave me an opportunity to have a look at the wounds as well. 2. I guess it sort of keeps me on track of where she is [health wise]. You know I got a better look at what the wounds were like as

well. 3. The value of that? Well it keeps up my knowledge of how healthy my daughter is.

1. Self-monitoring (A) 2. Self-management of Health Condition (C) 3. Functional Value (V)

1. I did find them useful as a tool to keep an eye on the wound. It made me have a look at it. I don't normally do that sort of stuff. 2. rather than just having to take the photos it was like “OK well you've told me they're good now I have to go and have a look at the

photos and just double check for myself,” you know it did help me in that aspect. 3. Knowledge of what it looks like of what it's like how she's going.

1. Responsibility (A) 2. Preventative-mindset (C) 3. Functional Value (V)

1. You know we all do our best to manage the children. 2. Well I'd like to think that everyone likes to see their kids you know fit and healthy. So you know is it matter of doing what we can

to make them healthy or whatever it takes to make them fit and healthy. 3. I like I like to see them is that healthy, you know I don't want I want to see my children sick.

1. Reassurance (A) 2. Emotional Regulation (C) 3. Functional Value (V)

1. It was just reassuring to have a look at them and know they were getting better. 2. You know some from looking at the beginning to sort of now wish you know it's just it's reassuring. 3. I mean she gets better. And that's sort of the end game for her to be as good as she can be.

Parent 15

1. Self-management (A) 2. Empowerment (C) 3. Functional Value (V)

1. By capturing the picture, you can physically go back with your phone and actually go look at that, it's healing like that and this is what it looked like the other day.

2. It would build your confidence that it's not getting worse, it's getting better or if it was getting worse we could have gone wow that's different.

3. For his own healing and then getting to know what's going on - what's happened to his body and being able to see it.

1. Increased awareness (A) 2. Improved Health Outcomes (C) 3. Functional Value (V)

1. once all the staples had come out and at one stage it was sore and things were happening and I'm going but look, look where you've come.

2. I think we scrolled through the photos so that was a really big thing as well, especially now when it's looking so much better. 3. It also reminds me of where we were. It's like yes, we are getting better. We're getting there.

1. Self-monitoring (A) 2. Partnership with Providers (C) 3. Functional Value (V)

4. We were involved in taking the photos and it was - it became what we were doing. 5. The experts - the study was going on but then we were actively taking photos and we were actively doing this together. So, we

were sending the photos off but that didn't become the main focus on why we were doing it then. 6. The value for us was just being able to watch the healing process and go along with it. I guess if something did go negative or

something got infected we'd definitely be able to pick up that sooner

Parent 16

1. Self-monitoring (A) 2. Self-management of Health Condition (C) 3. Efficiency Value (V)

1. I actually kept some of the photos to have a look and see if there were any changes 2. Being able to see and see if there's any improvement or if there are any changes that I need to make a note of or when it started if

there were any changes 3. Without monitoring that or you know, keeping an eye on it I wouldn't know if I needed to contact the doctors

1. Increased Awareness (A) 2. Perceptions of Self (C)

1. I was probably just made more aware of just healthcare in general by being involved in taking the photos.

 

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3. Efficiency Value (V) 2. I think it's just being more aware of different things within the body and how it heals, how it does this that and the other and just fobbing something off as nothing, there may actually be something there.

3. Otherwise you don't seek medical assistance in time I suppose, if you need to.

1. Diagnosis & Management (A) 2. Perceptions of Self (C) 3. Efficiency Value (V)

1. I'd actually check on my photos to make sure it still looked the same or a getting better 2. I don't have to remember what they look like because I've got a copy of it. 3. You know, that kind of thing. I'm able to look back at the - it should be okay or should we go and see a doctor or whatever. It just

makes it easier in general.

1. Data Sharing (A) 2. Social Support (C) 3. Social Value (V)

1. We were able to talk about why I'm taking photos of it and that kind of thing 2. Sharing information would probably be it. It’s about sharing a photo, sharing information, talking about it, just opening up

conversation 3. Oh they might have a different experience or have a different perspective or a different outcome for a similar thing previously. It

maybe being able to talk about that. I guess its incidental learning

1. Self-monitoring (A) 2. Self-management of Health Condition (C) 3. Self-determination (V)

1. This time specifically I had a look at it while I was taking the photos. 2. So I guess that's pretty much the change, the level of involvement after coming home. 3. Just being more involved in actually - the recovery process and the wound care after the fact as opposed to previously. Just trying

trusting in him [my son] to say “yeah I'm okay”.

Parent 17

1. Reassurance (A) 2. Empowerment (C) 3. Functional Value (V)

1. It would be nice to get that reassurance from someone who is a professional. 2. As a parent you want to be confident that you are doing for your child is the right thing and making progress and helping him to

get better. 3. Health issues have far reaching implications, so, as a parent I try to be there for my child, when he is not able to take decisions and

take care of himself yet, in a way that will promote his health for the rest of his life.

1. Resource Management (A) 2. Service & Experience Optimisation (C) 3. Transactional Value (V)

1. We have been in that situation as well, where we have lived in a remote area with three little kids in a remote area and we have had to phone a family doctor friend to discuss things.

2. When things go wrong it is usually over a weekend or in the evening when you can’t go to a doctor, I think definitely that if you could use that for communication.

3. I am sure in the remote areas in Australia it will also just give the families the support that they need especially with little children. I can see the value of that.

1. Resource Management (A) 2. Emotional Regulation (C) 3. Functional Value (V)

1. Sometimes it will lapse before you can get to a doctor, and sometimes it’s urgent to get faster advice, to get advice from medical personnel.

2. To get advice and reassurance that you are doing the right thing. 3. Preventing any further deterioration of the condition

1. Reassurance (A) 2. Partnership with Providers (C) 3. Transactional Value (V)

1. Reassurance is about knowing my child’s wounds were getting better, that it is was progressing in a normal way and that is wasn’t deteriorating.

2. And that someone was actually viewing that, it was a safety net for us that if something was not looking good they would let us know.

3. I think for other people that don’t have that understanding, they would find it helpful that there is that continued support and to know that if they have any questions they can easily access feedback.

Parent 18

1. Data Sharing (A) 2. Emotional Regulation (C) 3. Emotional Value (V)

1. I was glad I had my daughters photos and was able to send my friend at work the progressive photos to show her how well the wounds were healing

 

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2. I was hoping that that would make her, this is my friend at work, feel a bit more comfortable about her operation on Monday coming up so I was glad I was doing it.

3. Just to take a little bit of the anxiety my friend away from the whole thing

1. Altruism (A) 2. Emotional Buoyancy (C) 3. Emotional Value (V)

1. because of the comfort for want of a better term that my friend has received at work from seeing how those wounds will heal. 2. Well she's a good friend and we sort of have each other's back at work if I could use that term. So it was nice for me to be able to

give her some comfort about what getting her way shortly. 3. Just the value of helping a friend

1. Data Sharing (A) 2. Emotional Regulation (C) 3. Emotional Value (V)

1. Day Zero, I had them on my phone obviously when I got home I sent them to her and said this is this is what the scars look like 2. I think she's quite relieved because she realized that you know she held so she wasn't going to leave, you know long scars and

things like that the scars are you know literally a centimetre or so if that. 3. I think my friend was very relieved that she wasn't going to have to go through what I went through

1. Diagnosis and Management (A) 2. Emotional Regulation (C) 3. Functional Value (V)

1. I could see that the photographs confirm that my daughters wounds were healing well 2. I was just comforted 3. She was getting better as I thought she would and get better quickly.

1. Increased Awareness (A) 2. Preventative Mindset (C) 3. Efficiency Value (V)

1. If nothing else the people that are taking the photos it actually promotes them to do it to at least look at the wound every two days 2. I imagine most if not all parents would check the wound every day, but there are some strange people around, but if so strange

people were diligent in taking photos every two days that would be a real benefit 3. So I see that as early prevention would mean a faster cure if there was infection or other issues with the wounds that were leaking

or bleeding or things like that.

Parent 19

1. Evidence (A) 2. Self-management of Health Condition (C) 3. Functional Value (V)

1. To see how his body took the operation and the scarring 2. To see like the scars how they would heal I think motivated me to take the pictures 3. They would heal properly and just make sure they would be okay for his body. No infections or anything.

1. Reassurance (A) 2. Improved Health Outcomes (C) 3. Emotional Value (V)

1. I wanted to take the pictures for my own peace of mind and to make sure that they were going to heal properly 2. To know that like something that’s going to be on my son's body that, it's for a lifetime pretty much, that they're going to slowly

disappear and not get infected or anything 3. So it's given me that peace of mind that when I was taking those pictures it was clearing up really nicely and I was happy with that.

1. Reassurance (A) 2. Service & Experience Optimisation (C) 3. Functional Value (V)

1. Yeah just when I was talking the photos I got reassurance that the wounds were healing nicely and that there wasn’t going to be any infections

2. Like getting medical help like if they're infected we could get onto that straightaway. 3. Just in case there was an infection there. Like I could get that medical help.

1. Health Situation Control (A) 2. Emotional Regulation (C) 3. Self-determination Value (V)

1. I just had control of taking the pictures. 2. When I don’t have control I feel scared. I just freak out and just don’t know what to do. 3. So when I have control of something then as a parent to know my boy is safe then it's a good feeling

Parent 21

1. Resource Management (A) 2. Emotional Regulation (C) 3. Efficiency Value (V)

1. I think the benefits [of the photography] for people who live so remotely are fantastic. 2. It was nice to receive the email from you as a reassurance that the recovery was going well. 3. It also saves us having to unnecessarily go back to the hospital or to the GP

1. Resource Management (A) 2. Emotional Regulation (C) 3. Emotional Value (V)

1. If you live remotely out on a station somewhere out West. You don’t have access to doctors like we do in the city. So, it can save a lot of resources.

2. I guess it’s a big reassurance for parents to know that when they do go home

 

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3. Reassurance, I guess, for the parents.

1. Increased Awareness (A) 2. Self-management of Health Condition (C) 3. Functional Value (V)

1. I guess it just keeps you looking to make sure the wound is healing, looking for infection, that sort of thing. 2. Yeah definitely, just looking for signs of infection, redness, swelling, that sort of thing. 3. Just to keep on top of his health because it’s infection. For him I guess means that he gets sick again, could end up in hospital

again.

1. Resource Management (A) 2. Partnership with Providers (C) 3. Emotional Value (V)

1. Helping people who live remotely who don’t have the easy access to medical facilities like we do. 2. You know being able to take a photo and sending it to someone, to say is this okay or is there something wrong? 3. A definite reassurance for the families and the parents.

Parent 23

1. Altruism (A) 2. Improved Health Outcomes (C) 3. Functional Value (V)

1. I was helping out, they might find something that might actually then help better the process for someone else. 2. If it's something that they can catch onto an infection earlier through this way or be able to work on a process that might improve

that 3. The child's immunocompromised or something like that then it obviously could mean the difference between a really bad infection

versus just a slight infection so I think that's a reason to do it

1. Increased Awareness (A) 2. Self-management of Health Condition (C) 3. Transactional Value (V)

1. I guess it makes you more vigilant on what was happening for him. 2. But by photographing it and actually taking that opportunity to do that you also then did look at the wounds to see are they alright

- is everything looking alright? 3. I think it makes you feel like you're a part of that process of the end result as well as making sure everything is looking good. It

makes you feel a part of caring for your child.

1. Data Sharing (A) 2. Self-management of Health Condition (C) 3. Self-determination (V)

1. He was working the days that I was taking the photos so when he'd get home at night, I'd show him the photo of what I'd taken. 2. It was just good for him to see what - and I guess we were looking at the differences too from the first night. Well we took a photo

on the first night of surgery but yeah, the photo from the start of the project so we could go wow, look at that. 3. It's just seeing oh, that's the way - it's amazing how the body is able to go yeah, you know through movement I suppose and

showering and that sort of stuff, that's going to happen but yeah, it's just more of a curiosity thing. I don’t think there's any medical as such component behind it.

1. Reassurance (A) 2. Service & Experience Optimisation (C) 3. Efficiency Value (V)

1. So there's that feeling of reassurance that you go ooh, to me it's looking good but it's great to know that I can send these photos through.

2. It's something that potentially the surgeon looks at and sees something that's completely different from what the layperson does and can actually get onto that straight away.

3. it comes back to being able to capture or get onto an infection earlier than what it does so it's less detrimental to the child.

1. Resource Management (A) 2. Improved Health Outcomes (C) 3. Efficiency Value (V)

1. For them it's just pull up a t-shirt and let mum take a photo but the background to that is that it could be the difference between them being in their home and being able to do what they normally do versus risking having some infection coming on and potentially having to go to hospital for a day or so to have IV antibiotics, if they've got that bad that quickly

2. If you capture it early it's just a bit of soreness versus it could be very very painful. 3. So you're not having to work out who's going to be able to take the other child or children to school and who's going to pick them

up and who's going to do this and who's going to do that while you're in the hospital.

1. Co-creation (A) 2. Empowerment (C) 3. Self-determination (V)

1. I think it just comes down to that you know that you're contributing there. 2. So you feel like if you needed to voice your opinion on something, that you could get heard through that avenue 3. I think it makes you be able to contribute to your child's health and recovery

1. Resource Management (A) 1. Just to be easier for aftercare for a surgery to be able to take photos rather than come in and have to see the surgeon.

 

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Parent 25

2. Service & Experience Optimisation (C) 3. Efficiency Value (V)

2. So from a timesaving - even from a taxpayer perspective, [it should] hopefully cost less as well. 3. I’m just time poor and just the logistics of getting to see a doctor or after surgery, is always difficult.

1. Self-monitoring (A) 2. Service & Experience Optimisation (C) 3. Efficiency Value (V)

1. He was just more open in showing how the wounds were healing. Whereas, probably, if that wasn’t the case, he would have just said: it’s fine, it’s fine. Even if maybe it wasn’t because that’s what a 12 year old boy - yeah, well, my son would do. So he’s a lot more open to me seeing and taking the photos.

2. So if something wasn’t healing properly, I'd see early on, rather than waiting until the six week post-op. 3. It’s having that early awareness. So in the event that something did go wrong, well it’s early - I suppose early intervention rather

than waiting for it to get really disgusting; so yeah, definitely a high value.

1. Resource Management (A) 2. Service & Experience Optimisation (C) 3. Efficiency Value (V)

1. It’s probably that early intervention. So if something was - went not well in the healing, well I’d abruptly get intervention earlier. 2. It’s just finding time to follow up and have appointments. You’re less likely to - even if I was borderline, to be quite honest, I’d

probably be less likely to make an appointment unless I knew it was quite bad 3. Time to get other things done and spend time with family or work, yeah, other commitments.

1. Communication (A) 2. Partnership with Providers (C) 3. Efficiency Value (V)

1. It provides that ongoing communication channel which enables if something did go wrong, it’s an easy way to interact with the doctor.

2. Rather than a formal appointment, I think it’s more of a casual interaction; so it could be an email or if it’s ongoing to say, look, yes, can you look at this?

3. So it’s just an easier way to communicate rather than waiting in a waiting room.

Parent 26

1. Self-monitoring (A) 2. Improved Health Outcomes (C) 3. Functional Value (V)

1. I can actually tell whether it gets better or worse as time goes by, and I can tell from the correct image, to the last image how it heals and then what my child's health is like.

2. The images can help me tell whether my child's health doing okay, that everything goes fine. 3. It tells me how my kid's health like.

1. Co-creation (A) 2. Partnership with Providers (C) 3. Emotional Value (V)

1. I think the motivation which makes me wanting to take these photos is that I know that I think you told us that the doctor and you would be looking at them.

2. We know that the doctors [do care] even when we've left the hospital and we still have someone looking at it. 3. I was quite worried if we leave the hospital no one would be looking after us. It's good to know that they are doing this even when

we left.

Parent 27

1. Increased Awareness (A) 2. Self-management of Health Condition (C) 3. Functional Value (V)

1. By taking the photograph obviously, you are paying more attention 2. To how is the progress of the wound, “is it getting worse or is it getting better?” 3. Well the value is you increase your knowledge about how to observe, and then how to take care and how to respond if something

bad happens or something that you see it's a bit worse.

1. Data Sharing (A) 2. Self-management of Health Condition (C) 3. Social Value (V)

1. I went through with her what I had to do and what I had to put on. You know the measurement to be able to indicate if any symptoms of that wound - you know any changes, something like that, that you can measure.

2. I just told my wife, we need to capture these three wounds and make sure they are in good visibility and need to observe the changes from day to day, from one photo to another for each wound.

3. Well the value is not only me, I guess, my wife, knows what's the purpose of doing it. So next time she can do it. It's not only me that can do that one, but my wife can do that one too

1. Entertainment (A) 2. Emotional Regulation (C) 3. Social Value (V)

1. I think they [my children] don't quite like it [the photo] , that looks a bit disgusting. …I think we made it a bit fun, you know…it's disgusting, I don't like it. I said, “well I'm just going to ask you to take this bit here and do show and tell”, something like that [laughs]. Then they said, “no, no, no”.

 

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2. I was just telling them that this is - I'm just trying to pass on the message that this is not something that they need to be scared of. 3. There is a positive thing behind this that you can say to their friends “so it looks a bit disgusting,” but you can actually use it. You

can talk to your friends that this is the wound and that sort of stuff.

1. Self-monitoring (A) 2. Perceptions of Self (C) 3. Functional Value (V)

1. I can monitor this wound, which I've never done before because this one is a bit different that I haven't done before. 2. This one has three wounds and, since this illness is quite dangerous, then I wouldn't mind paying more attention. 3. By taking that photo, I didn't really think that I was going to do that and I think that would be a good help for me to monitor the

wounds.

Parent 28

1. Medical Research (A) 2. Service & Experience Optimisation (C) 3. Functional Value (V)

1. Anything to do with any research that can make anything better or easier for people in the future was sort of a big motivator for us.

2. Just to give anyone more information that might be able to change systems or improve systems, either in the hospital or after patients leave the hospital.

3. I mean then we might sort of be able to in turn give some patients in the future a bit more information or make things a little bit easier for them when they come home.

1. Communication (A) 2. Self-management of Health Condition (C) 3. Emotional value (V)

1. I think just by looking at it, it gave us another point of contact [with the doctor], like another tie to discuss it 2. having that original photo made it a bit easier to see if it had changed over that couple of days. 3. Just made us feel better, I think, that she was healing the way she was meant to heal. Just peace of mind.

1. Increased Awareness (A) 2. Perceptions of Self (C) 3. Emotional Value (V)

1. It was something that was suggested to us, it then made me more aware that taking a photo was probably a good thing for us 2. a responsibility to make sure that she was healing the way she should be healing. 3. I think just - I think as a parent, when you have that greater sense of responsibility of something, it is always reassuring that you're

doing as much as what you possibly can for her after the surgery.

1. Medical Research (A) 2. Empowerment (C) 3. Functional Value (V)

1. When you're talking photos or when you've been asked to participate in something like that, when you know that health professionals are behind you looking at those photos and using them for research purposes

2. I suppose it does make you feel that you've kind of got a bit more of a say 3. That your results are important to a greater cause [to improve healthcare]

Parent 29

1. Diagnosis & Management (A) 2. Improved Health Outcomes (C) 3. Self-determination (V)

1. I thought, well, if there's something that I can do to sort of - one it will benefit me if he did end up getting an infection and that sort of stuff it would be a bit of an early intervention sort of thing.

2. if you don't treat it properly earlier it could end up turning into a big scar and all that sort of stuff. If that happened, possibly with taking these photos it's made me monitor it more.

3. It's important to- because the child is seven years old, he's not going to notice anything, he's just going to be going along like a child does and so it's important for me to actually maintain his health,

1. Altruism (A) 2. Service & Experience Optimisation (C) 3. Transactional Value (V)

1. There was a small benefit to me but, obviously, there's also a benefit for people like yourself who are actually doing the research and that sort of stuff.

2. Obviously, it's getting sent to somebody who is also looking at those photos as well. So if there was some sort of infection and I wasn't quite - didn't really know what I was looking for sort of thing - if I didn't know what was happening then there would be someone else who was actually having a look at them.

3. So it really felt like - I wasn't taking those photos and doing it then it would be just all up to me. But it kind of felt there was a bit of backup

1. Data Sharing (A) 2. Empowerment (C) 3. Self-determination Value (V)

1. Well all my family and friends obviously knew what was happening, so when they're all sort of coming around seeing how he's going and that sort of stuff, just to sort of show them this is how it looks, day one, that sort of stuff. So more just to inform people, and just to show them what it looked like.

 

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2. It was almost like, see I was right, it's almost kind of like proving to people he was really sick, see. 3. it's almost kind of like just sort of - not exactly like saying wow, cool, look how cool the scars are or that sort of stuff. Just more

like see, this is what we went through, sort of thing.

1. Co-creation (A) 2. Partnership with Providers (C) 3. Transactional Value (A)

1. It's almost like having a backup, someone actually there to - if I did miss something or something was going on that I wasn't aware of, that there was someone there sort of also monitoring it as well.

2. So it's kind of almost like having a little doctor in your back pocket almost, that they were sort of - not having to - didn't have to go somewhere to make sure he was doing - like it was all progressing well.

3. The value is huge, like it's kind - as I said it's like having somebody there that is not physically there and you're not having to do anything apart from taking a couple of photos.

Parent 30

1. Communication (A) 2. Self-management of Health Condition (C) 3. Efficiency Value (V)

1. If I was looking at my child and I thought, okay this doesn't seem quite right, instead of me going all the way to the hospital [name removed] or wherever the doctor would be, by sending him an image of what I was looking at, he could automatically see the same thing as me and confirm whether or not it was necessary for me to come in

2. It would save a lot of time 3. driving all the way for someone that could have a quick look at a picture and say, ‘that's all good’, I can see that's a normal thing

to happen. If these other symptoms occur then please, yes, come in, otherwise it's all good.

1. Self-monitoring (A) 2. Self-management of Health Condition (C) 3. Self-determination Value (V)

1. I just think it would just help in the way that, if I had missed it somehow, try and compare the previous photos with the more recent and see if there was any difference between the two.

2. Because we are so busy, sometimes it's easy to miss things. By having that record with us, it's easy to check if something was there or wasn't, or if she's getting better or worse.

3. Because obviously you want the best for your child

1. Communication (A) 2. Partnership with Providers (C) 3. Transactional Value (V)

1. So that was my way of showing them, look this is what I saw, it's a bit hard to describe, but here's the picture 2. So I took that picture and I showed it to the doctor and they were able to check what I was talking about. 3. If I do have a picture and I can say, look this is what it looked like, this is what I thought she was feeling, and by the doctor having

a look it, it can also help them trying to understand what I was trying to explain

1. Evidence (A) 2. Self-management of Health Condition (C) 3. Self-determination Value (V)

1. I keep them, like the same that I did with the other two years ago, I still have them. But, yeah, just as a record 2. So if it did happen, I could go back and say, hang on, I have seen this before, these are the same type of little pimples that she's

getting now that she had a few years ago. So it's good to compare. 3. I will keep and pass it on to her when she grows up.

1. Anxiety (A) 2. Self-management of Health Condition (C) 3. Efficiency Value (V)

1. The anxiety was in the way of just double checking whether or not there was good or bad alterations to her body from the last time that I've taken the picture.

2. Just to make sure that, yes, everything was done properly on my end, and also keeping an eye on the development of the recovery of my child.

3. So with the photos, if I could see something straight up from the last two days that I had taken the photo, I could help in that regard. Trying to make sure that things were sped up and looked after in due time and not waste time

 

 

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APPENDIX M: Study 1 & 2 Engagement-Empowerment Outcomes

Participant Solicited/ unsolicited/ both

PGHD Value creation

Facilitated or denied

Empowerment process experienced

Full Autonomy, Supported Autonomy

Empowerment outcome experienced

Described as self-confidence, responsibility, health situation and / or health system control

Improved Health Outcomes achieved with?

Carer 01 Unsolicited Yes Facilitated Yes Full Autonomy Partial Self-confidence / Health situation control

Provider

Carer 02 Unsolicited Yes Denied Yes Full Autonomy Partial Self-confidence Peer Network Carer 03 Unsolicited Yes Facilitated Yes Full Autonomy Partial Health system control Provider Carer 04 No PGHD No No PGHD No No None None No PGHD Carer 05 Both Yes Yes Yes Full Autonomy Full Self-confidence / Responsibility/

Health situation control / Health System control /

Provider

Carer06 Both Yes Yes Yes Supported Autonomy Full Self-confidence / Responsibility/ Health situation control / Health System control /

Provider

Carer 07 Unsolicited Yes Denied No No Autonomy None None Provider Carer 07 Unsolicited Yes Facilitated Yes Full Autonomy Partial Self-confidence Provider Patient 01 No PGHD No No PGHD No No Autonomy None None No PGHD Patient02 Unsolicited Yes Facilitated Yes Supported Autonomy Partial Responsibility / Health Situation

Control Provider

Patient 03 No PGHD No No PGHD No No Autonomy None None No PGHD Patient 04 Solicited Yes Facilitated Yes Supported Autonomy Partial Responsibility Provider Patient 05 Unsolicited Yes Denied No No Autonomy None None ProviderPatient 05 Unsolicited Yes Facilitated Yes Full Autonomy Partial Health situation control Provider Patient 06 Unsolicited Yes Facilitated Yes Full Autonomy Partial Health situation control / Self-

confidence Provider

Patient 07 Unsolicited Yes Facilitated Yes Full Autonomy Partial Health situation control / Health System control /

Provider

Patient 08 Unsolicited Yes Facilitated Yes Full Autonomy Partial Responsibility/ Health situation control / Health System control /

Provider

 

204

Patient 09 No PGHD No No PGHD No No Autonomy None None No PGHD Patient 10 Both Yes Yes Yes Supported Autonomy Full Self-confidence / Responsibility/

Health situation control / Health System control /

Provider

Patient 11 Unsolicited Yes Facilitated Yes Full Autonomy Partial Responsibility/ Health situation control /

Provider

Patient 12 Unsolicited Yes Denied Yes Full Autonomy Partial Health situation control Peer Network Patient 13 Unsolicited Yes Facilitated Yes Full Autonomy Partial Health situation control Peer Network Patient 14 Unsolicited Yes Facilitated Yes Full Autonomy Partial Health situation control Peer Network Patient 15 Both Yes Facilitated Yes Supported Autonomy Partial Health situation control / Self-

confidence Provider

Patient 16 Unsolicited Yes Facilitated Yes Full Autonomy Partial Health situation control / Self-Confidence / Responsibility

Provider

Parent 01 Solicited Yes Not shared w Doc

Yes Supported Autonomy Partial Responsibility / Health System control / Health situation control

Provider

Parent 02 Solicited Yes Facilitated Yes Supported Autonomy Partial Responsibility / Health System control /

Provider

Parent 03 Both Yes Facilitated Yes Supported Autonomy Full Self-confidence / Responsibility/ Health situation control / Health System control /

Provider

Parent 04 Solicited Yes Facilitated Yes Supported Autonomy Full Self-confidence / Responsibility/ Health situation control /

Providers

Parent 05 Solicited Yes Facilitated Yes Supported Autonomy Partial Responsibility/ Health situation control /

Providers

Parent 06 Both Yes Facilitated Yes Supported Autonomy Full Self-confidence / Responsibility/ Health situation control / Health System control /

Provider

Parent 07 Solicited Yes Facilitated Yes Supported Autonomy Partial Self-confidence / Responsibility/ Health situation control

Providers

Parent 08 Both Yes Facilitated Yes Supported Autonomy Full Self-confidence / Responsibility/ Health situation control / Health System control /

Provider

Parent 09 Solicited Yes Facilitated Yes Supported Autonomy Partial Self-confidence / Responsibility/ Health situation control

Provider

 

205

Parent 10 Solicited Yes Facilitated Yes Supported Autonomy Partial Responsibility/ Health System control

Provider

Parent 11 Solicited Yes Facilitated Yes Supported Autonomy Partial Self-confidence Peer Network Parent 12 Solicited Yes Facilitated Yes Supported Autonomy Partial Self-confidence Provider Parent 13 Solicited Yes Facilitated Yes Supported Autonomy Partial Self-confidence / Responsibility/

Health situation control Provider

Parent 15 Solicited Yes Facilitated Yes Supported Autonomy Partial Self-confidence / Responsibility/ Health situation control

Provider

Parent 16 Solicited Yes Facilitated Yes Supported Autonomy Partial Self-confidence / Responsibility/ Health situation control

Provider

Parent 17 Solicited Yes Facilitated Yes Supported Autonomy Partial Self-confidence / Health situation control / Health System control

Provider

Parent 18 Solicited Yes Facilitated Yes Supported Autonomy Partial Health situation control Provider Parent 19 Solicited Yes Facilitated Yes Supported Autonomy Partial Health situation control Provider Parent 21 Both Yes Facilitated Yes Supported Autonomy Full Self-confidence / Responsibility/

Health situation control / Health System control /

Provider

Parent 23 Both Yes Facilitated Yes Supported Autonomy Partial Responsibility/ Health situation control / Health System control /

Provider

Parent 25 Solicited Yes Facilitated Yes Supported Autonomy Full Self-confidence / Responsibility/ Health situation control / Health System control /

Provider

Parent 26 Solicited Yes Facilitated Yes Supported Autonomy Partial Responsibility/ Health situation control / Health System control /

Provider

Parent 27 Both Yes Facilitated Yes Supported Autonomy Partial Responsibility/ Self- confidence / Health situation control

Provider

Parent 28 Solicited Yes Facilitated Yes Supported Autonomy Partial Responsibility/ Self- confidence / / Health System control /

Provider

Parent 29 Solicited Yes Facilitated Yes Supported Autonomy Partial Responsibility/ Health situation control / Health System control /

Provider

Parent 30 Both Yes Facilitated Yes Supported Autonomy Full Self-confidence / Responsibility/ Health situation control / Health System control /

Provider

 

 

206

REFERENCES

Aarikka‐Stenroos, L., & Jaakkola, E. (2012). Value co‐creation in knowledge intensive business services: A dyadic perspective on the joint problem solving process. Industrial Marketing Management, 41(1), 15‐26. doi:10.1016/j.indmarman.2011.11.008 

 Abel, E. M., Chung‐Canine, U., & Broussard, K. (2013). A quasi‐experimental evaluation of a school‐

based intervention for children experiencing family disruption. Journal of evidence‐based social work, 10(2), 136‐144.  

 Ahern, D. K., Woods, S. S., Lightowler, M. C., Finley, S. W., & Houston, T. K. (2011). Promise of and 

potential for patient‐facing technologies to enable meaningful use. American Journal of Preventive Medicine, 40(5 Suppl 2), S162‐172. doi:10.1016/j.amepre.2011.01.005 

 Aitken, J. F., Barbour, A., Burmeister, B., Taylor, S., Walpole, E., & Smithers, B. M. (2008). Clinical 

practice guidelines for the management of melanoma in Australia and New Zealand. Retrieved from  

 Ajzen, I. (1991). The theory of planned behavior. Organizational behavior and human decision 

processes, 50(2), 179‐211. doi:10.1016/0749‐5978(91)90020‐t  Akaka, M. A., Vargo, S. L., & Lusch, R. F. (2012). An exploration of networks in value cocreation: A 

service‐ecosystems view. Review of Marketing Research, 9, 13‐50.   Alford, B. L., & Sherrell, D. L. (1996). The role of affect in consumer satisfaction judgments of 

credence‐based services. Journal of Business Research, 37(1), 71‐84. doi:10.1016/0148‐2963(96)00030‐6 

 Altman, L., Fernando, S., Holt, S., Maeder, A., Margelis, G., Morgan, G., & Roche, S. (2014). One in 

four lives: the future of telehealth in Australia.   Anderson, R., & Funnell, M. (2010). Patient empowerment: Myths and misconceptions. Patient 

Education and Counseling, 79(3), 277‐282. doi:10.1016/j.pec.2009.07.025  Anderson, R. M., Funnell, M. M., Butler, P. M., Arnold, M. S., Fitzgerald, J. T., & Feste, C. C. (1995). 

Patient empowerment: results of a randomized controlled trial. Diabetes care, 18(7), 943‐949.  

 Antonovsky, A. (1987). Unraveling the mystery of health: How people manage stress and stay well. 

San Francisco, CA, US: Jossey‐Bass.  Antonovsky, A. (2002). Unraveling the Mystery of Health: How People Manage Stress and Stay Well. 

In D. F. Marks (Ed.), The Health Psychology Reader London: SAGE Publications Ltd.   Archer, A., Bolser, B., Crocker, J., Miller, J., Parman, C. C., & Warner, D. (2013). Managing unsolicited 

health information in the electronic health record. Journal of AHIMA / American Health Information Management Association, 84(10), 70‐73.  

 

 

207

Armstrong, D. J. (2004). The mobile phone as an imaging tool in SLE. Rheumatology (Oxford), 43(9), 1195. doi:10.1093/rheumatology/keh286 

 Arnould, E. J. (2008). Service‐dominant logic and resource theory. Journal of the Academy of 

Marketing Science, 36(1), 21‐24. doi:10.1007/s11747‐007‐0072‐y  Aujoulat, I., d’Hoore, W., & Deccache, A. (2007). Patient empowerment in theory and practice: 

polysemy or cacophony? Patient education and counseling, 66(1), 13‐20.   Aujoulat, I., Young, B., & Salmon, P. (2012). The psychological processes involved in patient 

empowerment. Orphanet Journal of Rare Diseases, 7(Suppl 2), A31. doi:10.1186/1750‐1172‐7‐S2‐A31 

 Babbie, E. R. (2013). The practice of social research. Andover; Belmont, Calif: Wadsworth.  Babin, B. J., Darden, W. R., & Griffin, M. (1994). Work and/or fun: measuring hedonic and utilitarian 

shopping value. Journal of Consumer Research, 644‐656.   Baer, D. (2011). Patient‐physician e‐mail communication: the kaiser permanente experience. Journal 

of oncology practice / American Society of Clinical Oncology, 7(4), 230‐233. doi:10.1200/jop.2011.000323 

 Balint, E. (1969). The possibilities of patient‐centered medicine. The Journal of the Royal College of 

General Practitioners, 17(82), 269‐276.   Bandura, A. (1977). Self‐efficacy: Toward a unifying theory of behavioral change. Psychological 

review, 84(2), 191‐215. doi:10.1037/0033‐295x.84.2.191  Bardes, C. L. (2012). Defining “patient‐centered medicine”. New England Journal of Medicine, 366(9), 

782‐783.   Barile, S., Saviano, M., & Polese, F. (2014). Information asymmetry and co‐creation in health care 

services. Australasian Marketing Journal (AMJ), 22(3), 205‐217.   Baron, S., & Harris, K. (2008). Consumers as resource integrators. Journal of marketing management, 

24(1‐2), 113‐130.   Baron, S., & Warnaby, G. (2011). Individual customers' use and integration of resources: Empirical 

findings and organizational implications in the context of value co‐creation. Industrial Marketing Management, 40(2), 211. Retrieved from ProQuest Central.  

 Barriball, L., & While, A. (1994). Collecting Data using a semi‐structured interview: a discussion paper. 

Journal of advanced nursing, 19(2), 328‐335.   Basch, E. (2013). Systematic collection of patient‐reported adverse drug reactions: a path to patient‐

centred pharmacovigilance. Drug safety: an international journal of medical toxicology and drug experience, 36(4), 277.  

 Berwick, D. (2001). Crossing the Quality Chasm: A New Health System for the 21st Century. Retrieved 

from http://www.nap.edu/books/0309072808/html/  

 

208

Bhaskar, R. (1978). On the possibility of social scientific knowledge and the limits of naturalism. Journal for the Theory of Social Behaviour, 8(1), 1‐28.  

 Blackwell, R. D., Engel, J. F., & Miniard, P. W. (2001). Consumer behavior. Australia; United Kingdom: 

South‐Western.  Bloom, P. N., & Pailin, J. E. (1995). Using information situations to guide marketing strategy. Journal 

of Consumer Marketing, 12(2), 19‐27. doi:10.1108/07363769510084876  Blythe, J. (2009). Involvement. In. London: SAGE Publications Ltd.   Boland, P. (2007). The emerging role of cell phone technology in ambulatory care. The Journal of 

ambulatory care management, 30(2), 126‐133.   Bowen, A. C., Burns, K., Tong, S. Y. C., Andrews, R. M., Liddle, R., O'Meara, I. M., . . . Carapetis, J. R. 

(2014). Standardising and Assessing Digital Images for Use in Clinical Trials: A Practical, Reproducible Method That Blinds the Assessor to Treatment Allocation. PLoS ONE, 9(11), e110395. doi:10.1371/journal.pone.0110395 

 Boyce, Z., Gilmore, S., Xu, C., & Soyer, H. P. (2011). The remote assessment of melanocytic skin 

lesions: a viable alternative to face‐to‐face consultation. Dermatology, 223(3), 244‐250. doi:10.1159/000333363 

 Bragazzi, N. L. (2013). From P0 to P6 medicine, a model of highly participatory, narrative, interactive, 

and" augmented" medicine: some considerations on Salvatore Iaconesi's clinical story. Patient Preference & Adherence, 7.  

 Bravo, P., Edwards, A., Barr, P. J., Scholl, I., Elwyn, G., McAllister, M., . . . the Cochrane Healthcare 

Quality Research Group, C. U. (2015). Conceptualising patient empowerment: a mixed methods study. BMC Health Services Research, 15(1), 252. doi:10.1186/s12913‐015‐0907‐z 

 Brennan, P. F., & Casper, G. (2015). Observing health in everyday living: ODLs and the care‐between‐

the‐care. [journal article]. Personal and Ubiquitous Computing, 19(1), 3‐8. doi:10.1007/s00779‐014‐0805‐0 

 Brodie, R. J., Hollebeek, L. D., Juric, B., & Ilic, A. (2011). Customer Engagement: Conceptual Domain, 

Fundamental Propositions, and Implications for Research. Journal of Service Research, 14(3), 252‐271. doi:10.1177/1094670511411703 

 Buller, M. K., & Buller, D. B. (1987). Physicians' communication style and patient satisfaction. Journal 

of Health and Social Behavior, 375‐388.   Burns, K., & Belton, S. (2013). Clinicians and their cameras: policy, ethics and practice in an Australian 

tertiary hospital. Australian Health Review, 37(4), 1.   Casper, G. R., & McDaniel, A. (2015). Introduction to theme issue on technologies for patient‐defined 

and patient‐generated data. Personal and Ubiquitous Computing, 19(1), 1‐2. doi:10.1007/s00779‐014‐0803‐2 

 

 

209

Chahal, H., & Kumari, N. (2011). Consumer Perceived Value and Consumer Loyalty in the Healthcare Sector. Journal of Relationship Marketing, 10(2), 88‐112. doi:10.1080/15332667.2011.577729 

 Chahal, H., & Kumari, N. (2012). Consumer perceived value. International Journal of Pharmaceutical 

and Healthcare Marketing, 6(2), 167‐190. doi:10.1108/17506121211243086  Chen, S.‐C., Jong, D., & Lai, M.‐T. (2014). Assessing the Relationship between Technology Readiness 

and Continuance Intention in an E‐Appointment System: Relationship Quality as a Mediator. Journal of medical systems, 38(9), 1‐12. doi:10.1007/s10916‐014‐0076‐3 

 Cheng, C., & Dunn, M. (2015). Health literacy and the Internet: a study on the readability of 

Australian online health information. Australian and New Zealand journal of public health, 39(4), 309‐314.  

 Cho, & Moya, D. (2016). Empowerment as a Key Construct for Understanding Corporate Community 

Engagement. International Journal of Strategic Communication, 10(4), 272. Retrieved from ABI/INFORM Collection.  

 Cho, M., & De Moya, M. (2016). Empowerment as a Key Construct for Understanding Corporate 

Community Engagement. International Journal of Strategic Communication, 10(4), 272. Retrieved from ABI/INFORM Collection.  

 Cho, Y. I. (2008). Intercoder Reliability. Encyclopedia of Survey Research Methods. Sage Publications, 

Inc. Thousand Oaks, CA: Sage Publications, Inc.  Choi, K.‐S., Cho, W.‐H., Lee, S., Lee, H., & Kim, C. (2004). The relationships among quality, value, 

satisfaction and behavioral intention in health care provider choice: A South Korean study. Journal of Business Research, 57(8), 913‐921. doi:10.1016/S0148‐2963(02)00293‐X 

 Chou, W.‐Y. S., Hunt, Y., Folkers, A., & Augustson, E. (2011). Cancer survivorship in the age of 

YouTube and social media: a narrative analysis. Journal of medical Internet research, 13(1), e7.  

 Chung, A. E., & Basch, E. M. (2015). Potential and challenges of patient‐generated health data for 

high‐quality cancer care. Journal of oncology practice / American Society of Clinical Oncology, 11(3), 195‐197. doi:10.1200/JOP.2015.003715 

 Chung, A. E., Sandler, R. S., Long, M. D., Ahrens, S., Burris, J. L., Martin, C. F., . . . Kappelman, M. D. 

(2016). Harnessing person‐generated health data to accelerate patient‐centered outcomes research: the Crohn’s and Colitis Foundation of America PCORnet Patient Powered Research Network (CCFA Partners). Journal of the American Medical Informatics Association, ocv191. doi:10.1093/jamia/ocv191 

 Clark, V. L. P. (2010). The adoption and practice of mixed methods: US trends in federally funded 

health‐related research. Qualitative Inquiry.   Clemens, N. A. (2012). Privacy, consent, and the electronic mental health record: The person vs. the 

system. Journal of Psychiatric Practice®, 18(1), 46‐50.   

 

210

Collier, J. E., & Sherrell, D. L. (2010). Examining the influence of control and convenience in a self‐service setting. Journal of the Academy of Marketing Science, 38(4), 490‐509. doi:10.1007/s11747‐009‐0179‐4 

 Comstock, E. (Singer‐songwriter). (2013). Constructivism. On.   Corbin, J. M., & Strauss, A. L. (2008). Basics of qualitative research: techniques and procedures for 

developing grounded theory. Los Angeles: SAGE Publications.  Creighton, S., Alderson, J., Brown, S., & Minto, C. L. (2002). Medical photography: ethics, consent and 

the intersex patient. BJU International, 89(1), 67‐71. doi:10.1046/j.1464‐4096.2001.01809.x  Crotty, M. (1998). The foundations of social research: Meaning and perspective in the research 

process: Sage.  Dabholkar, P. A., Bobbitt, L. M., & Lee, E. J. (2003). Understanding consumer motivation and behavior 

related to self‐scanning in retailing. International Journal of Service Industry Management, 14(1), 59‐95. doi:10.1108/09564230310465994 

 Dabholkar, P. A., Thorpe, D. I., & Rentz, J. O. (1995). A measure of service quality for retail stores: 

scale development and validation. Journal of the Academy of marketing Science, 24(1), 3‐16.   Danermark, B., Ekström, M., Jakobsen, L., & Karlsson, J. C. (2002). Explaining society. Critical realism 

in the social sciences.   Darby, M. R., & Karni, E. (1973). Free Competition and the Optimal Amount of Fraud. Journal of Law 

and Economics, 16(1), 67‐88. doi:10.1086/466756  Day, M., Fawcett, S. E., Fawcett, A. M., & Magnan, G. M. (2013). Trust and relational embeddedness: 

exploring a paradox of trust pattern development in key supplier relationships. Industrial marketing management, 42(2), 152‐165. doi:10.1016/j.indmarman.2012.12.004 

 Deering, M. (2013). Issue Brief: Patient‐Generated Health Data and Health IT. Retrieved from   Desouza, K. C., Awazu, Y., Jha, S., Dombrowski, C., Papagari, S., Baloh, P., & Kim, J. Y. (2008). 

Customer‐driven innovation. Research‐Technology Management, 51(3), 35‐44.   Dodds, S., Bulmer, S., & Murphy, A. (2014). Consumer value in complementary and alternative 

medicine (CAM) health care services. Australasian Marketing Journal (AMJ), 22(3), 218‐229.   Dorflinger, L., Kerns, R. D., & Auerbach, S. M. (2013). Providers' roles in enhancing patients' 

adherence to pain self management. Translational Behavioral Medicine, 3(1), 39‐46. Retrieved from cmedm. doi:10.1007/s13142‐012‐0158‐z 

 Easton, G. (2010). Critical realism in case study research. Industrial Marketing Management, 39(1), 

118‐128.   Edmondson, A. C., & McManus, S. E. (2007). Methodological fit in management field research. 

Academy of management review, 32(4), 1246‐1264.   Edmunds, H. (2000). The focus group research handbook: McGraw‐Hill. 

 

211

 Edwards, P. K., O'Mahoney, J., & Vincent, S. (2014). Studying organizations using critical realism: a 

practical guide. Oxford: Oxford University Press.  Eisenhardt, K. M. (1989). Building Theories from Case Study Research. The Academy of Management 

Review, 14(4), 532‐550.   Ekrem, C., & Fazil, K. (2007). Customer perceived value: the development of a multiple item scale in 

hospitals. Problems and Perspectives in Management, 5(3 (continued)), 252.   Elg, M., Engström, J., Witell, L., & Poksinska, B. (2012). Co‐creation and learning in health‐care service 

development. Journal of Service Management, 23(3), 328‐343. doi:10.1108/09564231211248435 

 Emons, W. (1997). Credence goods and fraudulent experts. The Rand journal of economics, 28(1), 

107‐119. doi:10.2307/2555942  Eriksson, K., & Nilsson, D. (2007). Determinants of the continued use of self‐service technology: The 

case of Internet banking. Technovation, 27(4), 159‐167.   Ferguson, T. (2007). e‐Patients: How they can help us cure medicine. Retrieved 2014‐04‐24, from 

http://e‐patients.net/e‐Patients_White_Paper.pdf  Finch, J. (1987). The Vignette Technique in Survey Research. Sociology, 21(1), 105‐114. 

doi:10.1177/0038038587021001008  Finlay, L. (2006). ‘Rigour’,‘ethical integrity’or ‘artistry’? Reflexively reviewing criteria for evaluating 

qualitative research. The British Journal of Occupational Therapy, 69(7), 319‐326.   Fletcher, A. J. (2016). Applying critical realism in qualitative research: methodology meets method. 

International Journal of Social Research Methodology, 1‐14. doi:10.1080/13645579.2016.1144401 

 Flick, U. (Singer‐songwriter). (2013). Analysing Interviews. On.   Fox, S. (2013). After Dr Google: Peer‐to‐Peer Health Care. [10.1542/peds.2012‐3786K]. Pediatrics, 

131(Supplement 4), S224.   Frühauf, J., Schwantzer, G., Ambros‐Rudolph, C. M., Weger, W., Ahlgrimm‐Siess, V., Salmhofer, W., & 

Hofmann‐Wellenhof, R. (2012). Pilot study on the acceptance of mobile teledermatology for the home monitoring of high‐need patients with psoriasis. Australasian Journal of Dermatology, 53(1), 41‐46.  

 Fulop, L. E., Avery, M., Clark, E., Fisher, R. J., Gapp, R. P., Guzman, G. A. C., . . . Vecchio, N. (2012). 

Outstanding Achievement and Lessons Learned about Consumer/Patient‐Centred Care in the Australian Healthcare System.  

 Fumagalli, L. P., Radaelli, G., Lettieri, E., Bertele, P., & Masella, C. (2014). Patient Empowerment and 

its neighbours: Clarifying the boundaries and their mutual relationships. Health Policy (Amsterdam, Netherlands). Retrieved from cmedm.  

 

 

212

Galetzka, M., Verhoeven, J. W. M., & Pruyn, A. T. H. (2006). Service validity and service reliability of search, experience and credence services: A scenario study. International Journal of Service Industry Management, 17(3), 271‐283. doi:10.1108/09564230610667113 

 Garry, T., & Harwood, T. (2009). The moderating influence of client sophistication on relationships 

within business‐to‐business credence service markets. The journal of business & industrial marketing, 24(5/6), 380‐388. doi:10.1108/08858620910966264 

 Glaser, B. G., & Strauss, A. L. (1999). The discovery of grounded theory: strategies for qualitative 

research. New Brunswick, N.J: Aldine Transaction.  Gollamudi, S. S., Topol, E. J., & Wineinger, N. E. (2016). A framework for smartphone‐enabled, 

patient‐generated health data analysis. PeerJ Preprints, 4, e1911v1911.   Grande, S. W., Faber, M. J., Durand, M.‐A., Thompson, R., & Elwyn, G. (2014). A classification model 

of patient engagement methods and assessment of their feasibility in real‐world settings. Patient Education And Counseling, 95(2), 281‐287. Retrieved from cmedm. doi:10.1016/j.pec.2014.01.016 

 Greenfield, S., Kaplan, S., & Ware, J. E. (1985). Expanding patient involvement in careEffects on 

patient outcomes. Annals Of Internal Medicine, 102(4), 520‐528.   Grönroos, C. (1990). Service management and marketing: managing the moments of truth in service 

competition: Lexington Books Lexington, MA.  Grönroos, C. (2008). Service logic revisited: who creates value? And who co‐creates? European 

Business Review, 20(4), 298‐314. doi:10.1108/09555340810886585  Grönroos, C. (2011). Value co‐creation in service logic: A critical analysis. Marketing Theory, 11(3), 

279‐301. doi:10.1177/1470593111408177  Grönroos, C., & Helle, P. (2010). Adopting a service logic in manufacturing: conceptual foundation 

and metrics for mutual value creation. Journal of Service Management, 21(5), 564‐590.   Grönroos, C., & Ravald, A. (2011). Service as business logic: implications for value creation and 

marketing. Journal of Service Management, 22(1), 5‐22. doi:10.1108/09564231111106893  Grönroos, C., & Voima, P. (2013). Critical service logic: making sense of value creation and co‐

creation. Journal of the Academy of Marketing Science, 41(2), 133‐150. doi:10.1007/s11747‐012‐0308‐3 

 Guba, E. G., & Lincoln, Y. S. (1994). Competing paradigms in qualitative research. Handbook of 

qualitative research, 2(163‐194).   Guenzi, P., & Georges, L. (2010). Interpersonal trust in commercial relationships. European Journal of 

Marketing, 44(1/2), 114‐138. doi:10.1108/03090561011008637  Gummesson, E., & Mele, C. (2010). Marketing as Value Co‐creation Through Network Interaction and 

Resource Integration. Journal of Business Market Management, 4(4), 181‐198.   

 

213

Hanu‐Cernat, L. M., Hall, E., & Barnard, N. A. (2009). The diagnostic value of clinical photographs taken by patients. British Journal Oral Maxillofacial Surgery, 47(2), 167. doi:10.1016/j.bjoms.2008.07.191 

 Hardyman, W., Daunt, K. L., & Kitchener, M. (2014). Value Co‐Creation through Patient Engagement 

in Health Care: A micro‐level approach and research agenda. Public Management Review(Journal Article).  

 Harris, L. R. (2008). A phenomenographic investigation of teacher conceptions of student 

engagement in learning. Australian Educational Researcher, 35(1), 57‐79. doi:10.1007/bf03216875 

 Hartgers, M., & Jatoi, A. (2010). E‐Mail and photographs: A case report of a patient‐initiated 

diagnostic tool in the era of electronic communication. Journal of Palliative Medicine, 13(3), 335‐337.  

 Heintzman, N., & Kleinberg, S. (2016). Using uncertain data from body‐worn sensors to gain insight 

into type 1 diabetes. Journal of biomedical informatics, 63, 259‐268.   Henry, D., Dymnicki, A. B., Mohatt, N., Allen, J., & Kelly, J. G. (2015). Clustering Methods with 

Qualitative Data: a Mixed‐Methods Approach for Prevention Research with Small Samples. Prevention Science, 16(7), 1007‐1016. doi:10.1007/s11121‐015‐0561‐z 

 Hertzog, M. A. (2008). Considerations in determining sample size for pilot studies. Research in 

Nursing & Health, 31(2), 180‐191. doi:10.1002/nur.20247  Hibbard, J. H., Greene, J., & Overton, V. (2013). Patients with lower activation associated with higher 

costs; delivery systems should know their patients' 'scores'. Health affairs (Project Hope), 32(2), 216‐222. doi:10.1377/hlthaff.2012.1064 

 Hibbard, J. H., Stockard, J., Mahoney, E. R., & Tusler, M. (2004). Development of the Patient 

Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers. Health services research, 39(4p1), 1005‐1026.  

 Hochschild, A. R. (2012). The managed heart: Commercialization of human feeling: Univ of California 

Press.  Hogan, K., Cullan, J., Patel, V., Rajpara, A., & Aires, D. (2015). Overcalling a teledermatology selfie: a 

new twist in a growing field. Dermatology online journal, 21(6).   Holbrook, M. B. (1994). The nature of customer value: an axiology of services in the consumption 

experience. Service quality: New directions in theory and practice, 21, 21‐71.   Holbrook, M. B. (1999). Consumer value: a framework for analysis and research. New York;London;: 

Routledge.  Holtrop, J. S., Potworowski, G., Green, L. A., & Fetters, M. (2016). Analysis of Novel Care 

Management Programs in Primary Care: An Example of Mixed Methods in Health Services Research. Journal of Mixed Methods Research. doi:10.1177/1558689816668689 

 

 

214

Hood, L., & Weston, A. D. (2004). Systems biology, proteomics, and the future of health care: toward predictive, preventative, and personalized medicine. Journal of Proteome Research, 3(2), 179‐196. doi:10.1021/pr0499693 

 Howie, L., Hirsch, B., Locklear, T., & Abernethy, A. P. (2014). Assessing the value of patient‐generated 

data to comparative effectiveness research. Health Affairs, 33(7), 1220‐1228.   Hsieh, A. T., & Yen, C. H. (2005). The effect of customer participation on service providers' job stress. 

The Service Industries Journal, 25(7), 891‐905. doi:10.1080/02642060500134162  Hsieh, A. T., Yen, C. H., & Chin, K. C. (2004). Participative customers as partial employees and service 

provider workload. International journal of service industry management, 15(2), 187‐199.   Huba, N., & Zhang, Y. (2012). Designing Patient‐Centered Personal Health Records (PHRs): Health 

Care Professionals' Perspective on Patient‐Generated Data. Journal of Medical Systems, 36(6), 3893‐3905. Retrieved from ProQuest Central.  

 Hughes, R. (1998). Considering the vignette technique and its application to a study of drug injecting 

and HIV risk and safer behaviour. SOCIOLOGY OF HEALTH & ILLNESS, 20(3), 381‐400. doi:10.1111/1467‐9566.00107 

 Hunter, R. F., McAneney, H., Davis, M., Tully, M. A., Valente, T. W., & Kee, F. (2015). “Hidden” social 

networks in behavior change interventions. American journal of public health, 105(3), 513‐516.  

 Hyndman, K., & Ozerturk, S. (2011). Consumer information in a market for expert services. Journal of 

economic behavior & organization, 80(3), 628‐640. doi:10.1016/j.jebo.2011.06.004  Jaakkola, E., & Alexander, M. (2014). The Role of Customer Engagement Behavior in Value Co‐

Creation: A Service System Perspective. Journal of Service Research, 17(3), 247‐261. doi:10.1177/1094670514529187 

 Janamian, T., Crossland, L., & Wells, L. (2016). On the road to value co‐creation in health care: the 

role of consumers in defining the destination, planning the journey and sharing the drive. The Medical Journal of Australia, 204(7 Suppl), S12‐S14.  

 Jaworski, B., & Kohli, A. K. (2006). Co‐creating the voice of the customer. The service–dominant logic 

of marketing: dialog, debate and directions, 109‐117.   Johnson, M., Newton, P., & Goyder, E. (2006). Patient and professional perspectives on prescribed 

therapeutic footwear for people with diabetes: A vignette study. Patient Education and Counseling, 64(1–3), 167‐172.  

 Joo, B.‐K., Lim, D. H., & Kim, S. (2016). Enhancing work engagement: The roles of psychological 

capital, authentic leadership, and work empowerment. Leadership & Organization Development Journal, 37(8), 1117‐1134. doi:10.1108/LODJ‐01‐2015‐0005 

 Kanthawala, S., Vermeesch, A., Given, B., & Huh, J. (2016). Answers to Health Questions: Internet 

Search Results Versus Online Health Community Responses. Journal of Medical Internet Research, 18(4), e95. doi:10.2196/jmir.5369 

 

 

215

Kaplan, S. H., Greenfield, S., & Ware, J. E. (1989). Assessing the Effects of Physician‐Patient Interactions on the Outcomes of Chronic Disease. Medical Care, 27(Supplement), S110‐S127. doi:10.1097/00005650‐198903001‐00010 

 Kato, P. M. (2010). Video games in health care: Closing the gap. Review of General Psychology, 14(2), 

113.   Keeney, R. L., & Raiffa, H. (1993). Decisions with multiple objectives: preferences and value trade‐offs: 

Cambridge university press.  Kim, J., Christodoulidou, N., & Brewer, P. (2012). Impact of Individual Differences and Consumers’ 

Readiness on Likelihood of Using Self‐Service Technologies at Hospitality Settings. Journal of Hospitality & Tourism Research, 36(1), 85‐114. doi:10.1177/1096348011407311 

 Klein, D. M., Fix, G. M., Hogan, T. P., Simon, S. R., Nazi, K. M., & Turvey, C. L. (2015). Use of the Blue 

Button Online Tool for Sharing Health Information: Qualitative Interviews With Patients and Providers. Journal of medical Internet research, 17(8).  

 Kramer, M., Bauer, W., Dicker, D., Durusu‐Tanriover, M., Ferreira, F., Rigby, S., . . . van Hulsteijn, J. 

(2014). The changing face of internal medicine: patient centred care. European journal of internal medicine, 25(2), 125‐127.  

 Kristjanson, L. J., & Ashcroft, T. (1994). The family's cancer journey: A literature review. Cancer 

Nursing, 17(1), 1‐17.   Kumar, R. B., Goren, N. D., Stark, D. E., Wall, D. P., & Longhurst, C. A. (2016). Automated integration 

of continuous glucose monitor data in the electronic health record using consumer technology. Journal of the American Medical Informatics Association, 23(3), 532‐537.  

 Kvale, S. (2008). Qualitative Research Kit: Doing Interviews: SAGE Publications.  Lee, W. I., & Lin, C. H. (2011). Consumer hierarchical value map modeling in the healthcare service 

industry. African Journal of Business Management, 5(3), 722‐736. doi:10.5897/AJBM10.130  Lessard, L. (2014). Designing and Managing Value Co‐Creation in KIBS Engagements. Technology 

Innovation Management Review, 4(7), 36.   Leung, L. (2009). User‐generated content on the internet: an examination of gratifications, civic 

engagement and psychological empowerment. New media & society, 11(8), 1327‐1347.   Leventhal, J. C., Cummins, J. A., Schwartz, P. H., Martin, D. K., & Tierney, W. M. (2015). Designing a 

system for patients controlling providers’ access to their electronic health records: organizational and technical challenges. Journal of general internal medicine, 30(1), 17‐24.  

 Lewis, T. L., & Wyatt, J. C. (2014). mHealth and mobile medical Apps: a framework to assess risk and 

promote safer use. Journal of medical Internet research, 16(9), e210.   Liamputtong, P., & Ezzy, D. (2005). Qualitative research methods.   Liamputtong, P., & Ezzy, D. (2009). Qualitative research methods (Vol. 3rd). South Melbourne, Vic: 

Oxford University Press. 

 

216

 Lin, J.‐S. C., & Hsieh, P.‐l. (2006). The role of technology readiness in customers' perception and 

adoption of self‐service technologies. International Journal of Service Industry Management, 17(5), 497‐517. doi:10.1108/09564230610689795 

 Lloyd, A. E., & Luk, S. T. K. (2011). Interaction behaviors leading to comfort in the service encounter. 

The journal of services marketing, 25(3), 176‐189. doi:10.1108/08876041111129164  Lorig, K. R., Sobel, D. S., Stewart, A. L., Brown, J. B. W., Bandura, A., Ritter, P., . . . Holman, H. R. 

(1999). Evidence Suggesting That a Chronic Disease Self‐Management Program Can Improve Health Status While Reducing Hospitalization: A Randomized Trial. Medical Care, 37(1), 5‐14. doi:10.1097/00005650‐199901000‐00003 

 Lorig, K. R., Sobel, D. S., Stewart, A. L., Brown Jr, B. W., Bandura, A., Ritter, P., . . . Holman, H. R. 

(1999). Evidence suggesting that a chronic disease self‐management program can improve health status while reducing hospitalization: a randomized trial. Medical care, 37(1), 5‐14.  

 Lusch, Vargo, & O’Brien. (2007). Competing through service: insights from service‐dominant logic. 

Journal of retailing, 83(1), 5‐18.   Lusch, R., & Vargo, S. (2006a). The service‐dominant logic of marketing: dialog, debate, and 

directions. Armonk, N.Y: M.E. Sharpe.  Lusch, R., & Vargo, S. (2006b). Service‐dominant logic: reactions, reflections and refinements. 

Marketing Theory, 6(3), 281‐288. doi:10.1177/1470593106066781  Manolis, C., Meamber, L. A., Winsor, R. D., & Brooks, C. M. (2001). Partial employees and consumers: 

a postmodern, meta‐theoretical perspective for services marketing. Marketing Theory, 1(2), 225‐243.  

 Marcos‐Cuevas, J., Natti, S., Palo, T., & Baumann, J. (2016). Value co‐creation practices and 

capabilities: Sustained purposeful engagement across B2B systems. Industrial Marketing Management, 56, 97‐107. doi:10.1016/j.indmarman.2016.03.012 

 Marquard, J. L., Garber, L., Saver, B., Amster, B., Kelleher, M., & Preusse, P. (2013). Overcoming 

challenges integrating patient‐generated data into the clinical EHR: Lessons from the CONtrolling Disease Using Inexpensive IT–Hypertension in Diabetes (CONDUIT‐HID) Project. International journal of medical informatics, 82(10), 903‐910.  

 Marshall, M. N. (1996). Sampling for qualitative research. Family practice, 13(6), 522‐526.   Martin, J. S., McCormack, B., Fitzsimons, D., & Spirig, R. (2012). Evaluation of a clinical leadership 

programme for nurse leaders. Journal of Nursing Management, 20(1), 72‐80. doi:10.1111/j.1365‐2834.2011.01271.x 

 Martone, W. P., Kemp, G. F., & Pearson, S. J. (1989). The continuum of parental involvement in 

residential treatment: Engagement‐participation‐empowerment‐discharge. Residential Treatment for Children & Youth, 6(3), 11‐37.  

 

 

217

Mattila, A. S., & Wirtz, J. (2002). The impact of knowledge types on the consumer search process: An investigation in the context of credence services. International Journal of Service Industry Management, 13(3‐4), 214‐230. doi:10.1108/09564230210431947 

 Mazze, R. S., Shamoon, H., Pasmantier, R., Lucido, D., Murphy, J., Hartmann, K., . . . Lopatin, W. 

(1984). Reliability of blood glucose monitoring by patients with diabetes mellitus. The American Journal of Medicine, 77(2), 211‐217. doi:10.1016/0002‐9343(84)90693‐4 

 McClellan, S. R., Panattoni, L., Chan, A. S., & Tai‐Seale, M. (2016). Patient‐initiated Electronic 

Messages and Quality of Care for Patients With Diabetes and Hypertension in a Large Fee‐for‐Service Medical Group. Medical care, 54(3), 287‐295.  

 McColl‐Kennedy, J. R. (2014). Health care in service science special issue of Australasian Marketing 

Journal. Australasian Marketing Journal (AMJ), 22(3), 165‐167.   McColl‐Kennedy, J. R., & Richard, E. F., Jr. (2001). An empirical examination of the involvement to 

external search relationship in services marketing. Journal of Services Marketing, 15(2), 82‐98. doi:10.1108/08876040110381337 

 McColl‐Kennedy, J. R., Vargo, S. L., Dagger, T. S., Sweeney, J. C., & Kasteren, Y. v. (2012). Health Care 

Customer Value Cocreation Practice Styles. Journal of Service Research, 15(4), 370‐389. doi:10.1177/1094670512442806 

 Mele, C., & Russo Spena, T. (2010). Co‐creating value innovation through resource integration. 

International journal of quality and service sciences, 2(1), 60‐78. doi:10.1108/17566691011026603 

 Meuter, M. L., Ostrom, A. L., Bitner, M. J., & Roundtree, R. (2003). The influence of technology 

anxiety on consumer use and experiences with self‐service technologies. Journal of Business Research, 56(11), 899‐906. doi:10.1016/S0148‐2963(01)00276‐4 

 Michiels, E., Ouellette, L., Bush, C., VanDePol, E., Fleeger, T., & Jones, J. S. (2016). Camera Phones for 

the Follow‐up of Soft‐Tissue Injuries in Adult and Pediatric Emergency Department Patients: A Feasibility Study. The American Journal of Emergency Medicine.  

 Mills, P. K., & Morris, J. H. (1986). Clients as "Partial" Employees of Service Organizations: Role 

Development in Client Participation. The Academy of Management review, 11(4), 726‐735.   Mirabito, A. M. (2008). Looking for a good doctor (or realtor or mechanic): Construing quality with 

credence services  Dissertation/Thesis. ProQuest, UMI Dissertations Publishing.    Mohr, J., & Nevin, J. R. (1990). Communication Strategies in Marketing Channels: A Theoretical 

Perspective. Journal of Marketing, 54(4), 36‐51.   Mohr, L. B. (1982). Explaining organizational behavior: Jossey‐Bass.  Morgan, R. M., & Hunt, S. D. (1994). The commitment‐trust theory of relationship marketing. the 

journal of marketing, 20‐38.   

 

218

Murthy, H. S., & Wood, W. A. (2015). The Value of Patient Reported Outcomes and Other Patient‐Generated Health Data in Clinical Hematology. Current Hematologic Malignancy Reports, 10(3), 213‐224. doi:10.1007/s11899‐015‐0261‐6 

 Nambisan, P., & Nambisan, S. (2009). Models of consumer value cocreation in health care. Health 

care management review, 34(4), 344‐354. doi:10.1097/HMR.0b013e3181abd528  Nayler, J. (2003). Clinical photography: a guide for the clinician. Journal of postgraduate medicine, 

49(3), 256.   Nelson, P. (1970). Information and Consumer Behavior. Journal of Political Economy, 78(2), 311‐329. 

doi:10.1086/259630  Neuman, L. W. (2002). Social research methods: Qualitative and quantitative approaches.   Noren, G. N. (2014). Pharmacovigilance for a revolving world: prospects of patient‐generated data on 

the internet. DRUG SAFETY, 37(10), 761‐764. doi:10.1007/s40264‐014‐0205‐4  North, F., Elrashidi, M. Y., Ward, W. J., Takahashi, P. Y., Ebbert, J. O., Ytterberg, K. L., & Tulledge‐

Scheitel, S. M. (2015). Telemonitoring blood pressure by secure message on a patient portal: use, content, and outcomes. Telemedicine and e‐Health, 21(8), 630‐636.  

 Nundy, S., Lu, C.‐Y. E., Hogan, P., Mishra, A., & Peek, M. E. (2014a). Using Patient‐Generated Health 

Data From Mobile Technologies for Diabetes Self‐Management Support Provider Perspectives From an Academic Medical Center. Journal of diabetes science and technology, 8(1), 74‐82.  

 Nundy, S., Lu, C. Y. E., Hogan, P., Mishra, A., & Peek, M. E. (2014b). Using Patient‐Generated Health 

Data From Mobile Technologies for Diabetes Self‐Management Support: Provider Perspectives From an Academic Medical Center. Journal of Diabetes Science and Technology, 8(1), 74‐82. doi:10.1177/1932296813511727 

 Nyttingnes, O., Ruud, T., & Rugkåsa, J. (2016). ‘It's unbelievably humiliating’—Patients' expressions of 

negative effects of coercion in mental health care. International Journal of Law and Psychiatry, 49, Part A, 147‐153.  

 Obeyesekera, S., Herdiman, J., & Goh, B. (2006). Patient‐initiated digital photography in Peyronie's 

disease. International journal of STD & AIDS, 17(7), 493‐494.   Oghazi, P., Mostaghel, R., Hultman, M., Ekonomihögskolan, E., Linnéuniversitetet, Fakultetsnämnden 

för ekonomi och, d., & Parida, V. (2012). Antecedents of technology‐based self‐service acceptance: a proposed model. Services marketing quarterly, 33(3), 195‐210. doi:10.1080/15332969.2012.689937 

 Ouschan, R., Sweeney, J. C., & Johnson, L. W. (2000). Dimensions of patient empowerment: 

implications for professional services marketing. Health Marketing Quarterly, 18(1‐2), 99‐114.  

 Parasuraman, A., & Colby, C. L. (2015). An Updated and Streamlined Technology Readiness Index: TRI 

2.0. Journal of Service Research, 18(1), 59‐74. doi:10.1177/1094670514539730  

 

219

Parasuraman, A., Zeithaml, V. A., & Berry, L. L. (1985). A Conceptual Model of Service Quality and Its Implications for Future Research. Journal of Marketing, 49(4), 41‐50.  

 Parasuraman, A., Zeithaml, V. A., & Berry, L. L. (1988). Servqual. Journal of retailing, 64(1), 12‐40.   Patel, M. S., Asch, D. A., & Volpp, K. G. (2015). Wearable devices as facilitators, not drivers, of health 

behavior change. Jama, 313(5), 459‐460.   Patton, M. Q. (2005). Qualitative research: Wiley Online Library.  Payne, A., & Frow, P. (2011). A stakeholder perspective of the value proposition concept. European 

journal of marketing, 45(1/2), 223‐240. doi:10.1108/03090561111095676  Payne, A., & Storbacka, K. (2008). Managing the co‐creation of value. Journal of the Academy of 

Marketing Science, 36(1), 83‐96. doi:10.1007/s11747‐007‐0070‐0  Perry, C., & Gummesson, E. (2004). Action research in marketing. European Journal of Marketing, 

38(3/4), 310‐320.   Petersen, C., & DeMuro, P. (2015). Legal and regulatory considerations associated with use of 

patient‐generated health data from social media and mobile health (mHealth) devices. Applied Clinical Informatics, 6(1), 16‐26. doi:10.4338/ACI‐2014‐09‐R‐0082 

 Piligrimiene, Z., Dovaliene, A., & Virvilaite, R. (2015). Consumer Engagement in Value Co‐Creation: 

what Kind of Value it creates for Company? Engineering Economics, 26(4), 452‐460.   Pinho, N., Beirao, G., Patricio, L., & Fisk, R. P. (2014). Understanding value co‐creation in complex 

services with many actors. Journal of Service Management, 25(4), 470‐493. doi:10.1108/josm‐02‐2014‐0055 

 Plé, L., & Cáceres, R. C. (2010). Not always co‐creation: introducing interactional co‐destruction of 

value in service‐dominant logic. Journal of Services Marketing, 24(6), 430‐437. doi:10.1108/08876041011072546 

 Porter, M. E. (2010). What is value in health care? The New England journal of medicine, 363(26), 

2477‐2481. doi:10.1056/NEJMp1011024  Pourdanesh, F., Sayyedi, A., Jamilian, A., & Yaghmaei, M. (2012). Application of self‐recorded photos 

using mobile phones in maxillofacial surgery. Journal of Mobile Technology in Medicine, 1(3), 46‐49.  

 Powers, M. A., Bardsley, J., Cypress, M., Duker, P., Funnell, M. M., Fischl, A. H., . . . Vivian, E. (2016). 

Diabetes Self‐management Education and Support in Type 2 Diabetes: A Joint Position Statement of the American Diabetes Association, the American Association of Diabetes Educators, and the Academy of Nutrition and Dietetics. Clinical Diabetes, 34(2), 70‐80. doi:10.2337/diaclin.34.2.70 

 Powpaka, S. (1996). The role of outcome quality as a determinant of overall service quality in 

different categories of services industries: an empirical investigation. Journal of services marketing, 10(2), 5‐25. doi:10.1108/08876049610114230 

 

 

220

Prahalad, C. K., & Ramaswamy, V. (2004). Co‐creation experiences: The next practice in value creation. Journal of Interactive Marketing, 18(3), 5‐14. doi:10.1002/dir.20015 

 Pressey, A. D., & Howden, C. (2008). Customer value creation in professional service relationships: 

the case of credence goods. The service industries journal, 28(5/6), 789‐812. doi:10.1080/02642060801990361 

 Prey, J. E., Woollen, J., Wilcox, L., Sackeim, A. D., Hripcsak, G., Bakken, S., . . . Vawdrey, D. K. (2014). 

Patient engagement in the inpatient setting: a systematic review. Journal Of The American Medical Informatics Association: JAMIA, 21(4), 742‐750. Retrieved from cmedm. doi:10.1136/amiajnl‐2013‐002141 

 Prigge, J. K., Dietz, B., Homburg, C., Hoyer, W. D., & Burton, J. L. (2015). Patient empowerment: A 

cross‐disease exploration of antecedents and consequences. INTERNATIONAL JOURNAL OF RESEARCH IN MARKETING, 32(4), 375‐386. doi:10.1016/j.ijresmar.2015.05.009 

 Quiñones, M., Van den Broeck, A., & De Witte, H. (2013). Do job resources affect work engagement 

via psychological empowerment? A mediation analysis. Revista de Psicología del Trabajo y de las Organizaciones, 29(3), 127‐134.  

 Redd, W. H., Jacobsen, P. B., Die‐Trill, M., Dermatis, H., McEvoy, M., & Holland, J. C. (1987). 

Cognitive/attentional distraction in the control of conditioned nausea in pediatric cancer patients receiving chemotherapy. Journal of consulting and clinical psychology, 55(3), 391.  

 Reinders, M., Frambach, R., Kleijnen, M., Lee, N., & Lings, I. (2014). Mandatory use of technology‐

based self‐service: does expertise help or hurt? European Journal of Marketing, 49(1/2).   Robertson, N., Polonsky, M., & McQuilken, L. (2014). Are my symptoms serious Dr Google? A 

resource‐based typology of value co‐destruction in online self‐diagnosis. Australasian Marketing Journal(Journal Article). doi:10.1016/j.ausmj.2014.08.009 

 Rokeach, M. (1973). The nature of human values (Vol. 438): Free press New York.  Röndell, J., Sörhammar, D., & Gidhagen, M. (2016). Co‐governance in the consumer engagement 

process: facilitating multi‐beneficial value creation. Journal of strategic marketing, 24(3‐4), 327.  

 Ryan, R. M., & Deci, E. L. (2000). Self‐determination theory and the facilitation of intrinsic motivation, 

social development, and well‐being. American psychologist, 55(1), 68.   Sallis, J. F., Owen, N., & Fisher, E. B. (2008). Ecological models of health behavior. Health behavior 

and health education: Theory, research, and practice, 4, 465‐486.   Sandelowski, M. (1995). Sample size in qualitative research. Research in nursing & health, 18(2), 179‐

183.   Sands, D. Z., Wald, J. S., Wells, S., Rozenblum, R., Park, A., Dunn, M., . . . Pritchard‐Copley, A. (2014). 

Transforming Health Care Delivery Through Consumer Engagement, Health Data Transparency, and Patient‐Generated Health Information. IMIA Yearbook, 170‐176.  

 

 

221

Sanger, P. C., Hartzler, A., Lordon, R. J., Armstrong, C. A., Lober, W. B., Evans, H. L., & Pratt, W. (2016). A patient‐centered system in a provider‐centered world: challenges of incorporating post‐discharge wound data into practice. Journal of the American Medical Informatics Association, 23(3), 514‐525.  

 Sarkar, U., Fisher, L., & Schillinger, D. (2006). Is self‐efficacy associated with diabetes self‐

management across race/ethnicity and health literacy? Diabetes care, 29(4), 823‐829.   Sawhney, M., Verona, G., & Prandelli, E. (2005). Collaborating to create: The Internet as a platform 

for customer engagement in product innovation. Journal of Interactive Marketing, 19(4), 4‐17. doi:10.1002/dir.20046 

 Schecter, D. (2013). Critical Theory in the Twenty‐First Century (Vol. 1). New York: Bloomsbury 

Academic.  Schuster, L., & Drennan, J. (2013). Consumer acceptance of m‐wellbeing services: a social marketing 

perspective. European journal of marketing, 47(9), 1439‐1457. doi:10.1108/EJM‐10‐2011‐0556 

  Shapiro, M., Johnston, D., Wald, J., & Mon, D. (2012). Patient‐Generated Health Data. Retrieved from   Sharma, S., Conduit, J., & Rao Hill, S. (2014). Organisational capabilities for customer participation in 

health care service innovation. Australasian Marketing Journal (AMJ), 22(3), 179‐188. doi:http://dx.doi.org/10.1016/j.ausmj.2014.08.002 

 Simmons, L. A., Wolever, R. Q., Bechard, E. M., & Snyderman, R. (2014). Patient engagement as a risk 

factor in personalized health care: a systematic review of the literature on chronic disease. Genome Medicine, 6(2), 16‐16. Retrieved from cmedm. doi:10.1186/gm533 

 Smith, A. M. (2013). The value co‐destruction process: a customer resource perspective. European 

Journal of Marketing, 47(11/12), 1889‐1909. Retrieved from ABI/INFORM Complete.   Sobh, R., & Perry, C. (2006). Research design and data analysis in realism research. European Journal 

of Marketing, 40(11/12), 1194‐1209. doi:10.1108/03090560610702777  Solomon, M., Russell‐Bennett, R., & Previte, J. (2012). Consumer Behaviour: Pearson Higher 

Education AU.  Solomon, M., Surprenant, C., Czepiel, J., & Gutman, E. (1985). A Role Theory Perspective on Dyadic 

Interactions: The Service Encounter. The journal of marketing, 49(1), 99‐111.   Spencer, K., Sanders, C., Whitley, E. A., Lund, D., Kaye, J., & Dixon, W. G. (2016). Patient Perspectives 

on Sharing Anonymized Personal Health Data Using a Digital System for Dynamic Consent and Research Feedback: A Qualitative Study. Journal of medical Internet research, 18(4).  

 Stander, M. W., & Rothmann, S. (2010). Psychological empowerment, job insecurity and employee 

engagement. SA Journal of Industrial Psychology, 36(1), 1‐8.   

 

222

Storbacka, K., Brodie, R. J., Böhmann, T., Maglio, P. P., & Nenonen, S. (2016). Actor engagement as a microfoundation for value co‐creation. Journal of Business Research, 69(8), 3008‐3017. doi:10.1016/j.jbusres.2016.02.034 

 Street, R. L., Gordon, H. S., Krupat, E., & Kravitz, R. L. (2005). Patient Participation in Medical 

Consultations: Why Some Patients Are More Involved Than Others. Medical care, 43(10), 960‐969. doi:10.1097/01.mlr.0000178172.40344.70 

 Sujansky, W., & Kunz, D. (2015). A standard‐based model for the sharing of patient‐generated health 

information with electronic health records. Personal and Ubiquitous Computing, 19(1), 9‐25. doi:10.1007/s00779‐014‐0806‐z 

 Sullivan, T. B., Anderson, J. T., Ahn, U. M., & Ahn, N. U. (2014). Can Internet information on 

vertebroplasty be a reliable means of patient self‐education? Clinical Orthopaedics and Related Research®, 472(5), 1597‐1604.  

 Sülzle, K., & Wambach, A. (2005). Insurance in a market for credence goods. The Journal of risk and 

insurance, 72(1), 159‐176. doi:10.1111/j.0022‐4367.2005.00119.x  Sweeney, J. C., & Soutar, G. N. (2001). Consumer perceived value: The development of a multiple 

item scale. Journal of Retailing, 77(2), 203‐220. doi:10.1016/S0022‐4359(01)00041‐0  Tan, L., Hu, W., & Brooker, R. (2014). Patient‐initiated camera phone images in general practice: a 

qualitative study of illustrated narratives. British journal of general practice, 64(622), e290‐e294.  

 Tang, P. C., Ash, J. S., Bates, D. W., Overhage, J. M., & Sands, D. Z. (2006). Personal Health Records: 

Definitions, Benefits, and Strategies for Overcoming Barriers to Adoption. Journal of the American Medical Informatics Association, 13(2), 121‐126. doi:10.1197/jamia.M2025 

 Taylor, L. B. (2013). Preparing for patient‐generated documents. Journal of the American Health 

Information Management Association, 84(5), 46‐47.   Teke, A., Cengiz, E., Çetin, M., Demir, C., Kirkbir, F., & Fedai, T. (2012). Analysis of the Multi‐Item 

Dimensionality of Patients’ Perceived Value in Hospital Services. Journal of Medical Systems, 36(3), 1301‐1307. doi:10.1007/s10916‐010‐9590‐0 

 Thomke, S., & Von Hippel, E. (2002). Innovators. Harvard business review, 80(4), 74‐81.   Thompson, M., & Tranter, S. (2002). All‐comers policy for laparoscopic exploration of the common 

bile duct. British Journal of surgery, 89(12), 1608‐1612.   Thyer, B. A. (2012). Quasi‐experimental research designs. Oxford: Oxford University Press.  Tinetti, M. E., Naik, A. D., & Dodson, J. A. (2016). Moving From Disease‐Centered to Patient Goals–

Directed Care for Patients With Multiple Chronic Conditions: Patient Value‐Based Care. JAMA Cardiology, 1(1), 9‐10.  

 Tolley, E. E., Ulin, P. R., Mack, N., Robinson, E. T., & Succop, S. M. (2016). Qualitative Methods in 

Public Health: A Field Guide for Applied Research (Vol. 2): Wiley.  

 

223

Trujols, J., Portella, M. J., Iraurgi, I., Campins, M. J., Siñol, N., & Cobos, J. P. d. L. (2013). Patient‐reported outcome measures: Are they patient‐generated, patient‐centred or patient‐valued? Journal of Mental Health, 22(6), 555‐562. doi:10.3109/09638237.2012.734653 

 Van De Voorde, K., Veld, M., & Van Veldhoven, M. (2016). Connecting empowerment‐focused HRM 

and labour productivity to work engagement: the mediating role of job demands and resources. Human Resource Management Journal, 26(2), 192‐210.  

 Van Doornik, W. (2013). Meaningful use of patient‐generated data in EHRs. Journal of AHIMA / 

American Health Information Management Association, 84(10), 30‐35.   Vargo, S. L. (2008). Customer integration and value creation Paradigmatic Traps and Perspectives. 

Journal of Service Research, 11(2), 211‐215.   Vargo, S. L., & Lusch, R. F. (2004). Evolving to a new dominant logic for marketing. Journal of 

Marketing, 68(1), 1‐17.   Vargo, S. L., & Lusch, R. F. (2008). Service‐dominant logic: continuing the evolution. Journal of the 

Academy of Marketing Science, 36(1), 1‐10.   Vargo, S. L., Maglio, P. P., & Akaka, M. A. (2008). On value and value co‐creation: A service systems 

and service logic perspective. European Management Journal, 26(3), 145‐152. doi:10.1016/j.emj.2008.04.003 

 Verleye, K., Gemmel, P., & Rangarajan, D. (2013). Managing Engagement Behaviors in a Network of 

Customers and Stakeholders: Evidence From the Nursing Home Sector. Journal of Service Research, 17(1), 68‐84. doi:10.1177/1094670513494015 

 Vincent, C., & Furnham, A. (1996). Why do patients turn to complementary medicine? An empirical 

study. British Journal of Clinical Psychology, 35(1), 37‐48.   Vivek, S. D., Beatty, S. E., & Morgan, R. M. (2012). Customer Engagement: Exploring Customer 

Relationships Beyond Purchase. The Journal of Marketing Theory and Practice, 20(2), 122‐146. doi:10.2753/MTP1069‐6679200201 

 Walton, D. (2014). Abductive reasoning. USA: University of Alabama Press.  Washington, L. (2014). Enabling consumer and patient engagement with health information. Journal 

of AHIMA / American Health Information Management Association, 85(2), 56.   Webster, C., & Sundaram, D. S. (2009). Effect of service provider's communication style on customer 

satisfaction in professional services setting: the moderating role of criticality and service nature. Journal of Services Marketing, 23(2), 103‐113. doi:10.1108/08876040910946369 

 Whitehead, L., & Seaton, P. (2016). The Effectiveness of Self‐Management Mobile Phone and Tablet 

Apps in Long‐term Condition Management: A Systematic Review. Journal of medical Internet research, 18(5), e97.  

 Wolf‐Wendel, L., Ward, K., & Kinzie, J. (2009). A tangled web of terms: The overlap and unique 

contribution of involvement, engagement, and integration to understanding college student success. Journal of college student development, 50(4), 407‐428.  

 

224

 Wolf, J. A., Moreau, J. F., Akilov, O., Patton, T., English, J. C., 3rd, Ho, J., & Ferris, L. K. (2013). 

Diagnostic inaccuracy of smartphone applications for melanoma detection. JAMA Dermatol, 149(4), 422‐426. doi:10.1001/jamadermatol.2013.2382 

 Wood, W. A., Bennett, A. V., & Basch, E. (2015). Emerging uses of patient generated health data in 

clinical research. Molecular oncology, 9(5), 1018‐1024.   Woodall, T. (2003). Conceptualising ‘value for the customer’: an attributional, structural and 

dispositional analysis. Academy of Marketing Science Review, 12(1), 1‐42.   Woodruff, R. B. (1997). Customer value: The next source for competitive advantage. Journal of the 

Academy of Marketing Science, 25(2), 139‐153. doi:10.1007/bf02894350  Woodruff, R. B., & Flint, D. J. (2006). Marketing’s service‐dominant logic and customer value. The 

service‐dominant logic of marketing: Dialog, debate, and directions, 183‐195.   Xie, C., Bagozzi, R. P., & Troye, S. V. (2008). Trying to prosume: toward a theory of consumers as co‐

creators of value. Journal of the Academy of Marketing Science, 36(1), 109‐122. doi:10.1007/s11747‐007‐0060‐2 

 Yin, R. K. (2003). Case study research design and methods third edition. Applied social research 

methods series, 5.   Zainuddin, N., Previte, J., & Russell‐Bennett, R. (2011). A social marketing approach to value creation 

in a well‐women's health service. Journal of Marketing Management, 27(3‐4), 361‐385.   Zeithaml, V. A. (1988). Consumer perceptions of price, quality, and value: a means‐end model and 

synthesis of evidence. The Journal of Marketing, 2‐22.   Zeithaml, V. A., Bitner, M. J., & Gremler, D. D. (2006). Services marketing: Integrating customer focus 

across the firm.   Zimmerman, M. A. (1995). Psychological empowerment: Issues and illustrations. American Journal of 

Community Psychology, 23(5), 581‐599. doi:10.1007/BF02506983  Zimmerman, M. A. (2000). Empowerment theory. In Handbook of community psychology (pp. 43‐63): 

Springer.