Participatory development for

Human centered and Value-driven eHealth

J (Lisette) van Gemert-Pijnen

Center for eHealth Research & Disease Management Maastricht, 29 November 2010

Center for eHealth Research & Disease Management Institute for Social Sciences and Technology

to create and share knowledge about social and behavioural aspects of technology in health care

to translate knowledge into useful technology concepts for (re)designing and implementing technology in healthcare

to intensify cooperation with international research centres and healthcare institutes

to strengthen the relationship between research, policy and practice

to contribute to the solution of social-economic problems, like ageing and chronic care, via technology

Trends in Healthcare (1)Ageing societies demand for innovative solutions

↑ elderly people ↑ healthcare associated infections ↑ chronic diseases; comorbidity ↓ healthcare professionals ↓ budget

Trends in Healthcare (2) Nature of demand is changing: e-Citizens want Health 2.0 solutions for self-control

Technology can help, but what works?

Dementia

eCoacing

eMonitoring

eDecisionAids

eAwareness

eLogistics

eLearning

Adherence to technology

Focus in research: usage over timereasons for attrition; drivers for persistence

Eysenbach, 2005, the law of attrition, J Med Internet Res 7(1):1

Barriers for adherence; why IT does not worksystematic review diabetes care;1994-2009 (47/90 self-care)

management No coordination offline-onlineLack of training, education staffLack of project management (case manager, nurse, Gp, specialist,patient) Bias in population; bias in publication, no report of drop outsUnclear insight in benefits (cost/benefits for whom?)

technology Usability problemsOne-way-Feedback (professionals contact patient)Ceiling effect (ill-management; task-related coaches)Lack of push factors (triggers for motivation, like fun, entertaining, incentives, rewards) Lack of tailoring, template medicine

research No longitudinal studies, no process results of usage Control-groups do no match with Intervention groups (weak RCTs)Unclear definitions of self-careTechnology is a black box in research, no focus on capacities of technology as a medium for communication

Adherence to a web-based coach DM II; evaluation usage/discontinued usage (2 years)

Different tools appear on demand: e.g. healthy living test, sport selection guide, activity scale, nutrition guide, weight manager, diet guide, mobility exercises

MonitoringMotivation (eContact)Mentoring

•Education •Instruction

Usage over time, study period 2 years

methods

Survey Enrollee characteristics

Interviews barriers to enrollment

Log files/content analysis; Actual use of the web application

Usability-tests ; real-time observation actual usage

Interviews : motivations for use & barriers to use

Follow-up emails Barriers to long-term use

Usage and non-usage of the eDiabetes coach

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Personal data Online monitoring E-mail contact Online educationCalendar Personal li festyle coach Print feature

I just forget and if my diabetes nurse would provide some more help or pay some more attention to it, it might result in more interest.

It should be more interactive; that you would get a signal and reply.. That you would get a slightly more stable rhythm...

eCoaching, who persist? (review & diabetes coach)

Those that might feel they have much to gain..Conscientiousness to gain their goals… (Halko&Kientz, 2010) positive attitude in advance to use the application “under-estimaters” high medication users eager to realize goals higher use of all modules; in particular monitoring+email proactive, asking for support via eContact reflection on usage (demand for “smart” technology; integration of

monitoring+eContact+personal data) SES influences access, not persistence

Discontinued users (lifestyle coach) Technology not human-centered usability problems; people get lost lack of push factors (triggers; feedback; incentives; social media) Technology has no added value no fit into daily live ceiling effects (condition under control) wrong group (no critical condition to participants) No support (patients&profs) lack of pressure (no obligations for usage) lack of incentives, rewards no integration with offline medicine limited training staff no clear marketing or diffusion strategy

Adherence to Technology for dementia (vulnerable patients) (nursing homes; home care)

Safety support (passive) GPS track and trace

Support for self-care, well-being (inter-active) Touch screen & Video contact Chitchatters (contact games “the Past”)

Care coordination support (passive) IST Vivago Watch (measures sleep/wake rhythm) ADL-sensor technology (observing activities)

Supply driven technology (passive tech), limited value

GPS systems (Talk me Home) frighten patients and cause

weird situations (following tool, disregarding traffic)

Sensor technology (monitoring activities like eating,

sleeping) enhanced feelings of safety however a lot of

usability problems occurred

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Patients & carers differ in needs and interests

Narrative Technology, stories, songs, news from the past to “remember”

Patients want a view on the world outside, social contacts

caregivers and family carers want technology for safety control, structures for living (interest)

Why IT has limited value..

Supply-driven technology disregards needs and demands (frustration)

Expert-driven-development models disregard real-life situations and

complexity in healthcare (high tech, low impact)

Medical-driven approach results in ill-management apps, rational-decision-

making, no focus on well-being and lives to live (ceiling effects)

No hot-triggers for usage (drop-outs)

Absence of adequate business models hinder up-scaling (unclear who

benefits)

Shortage of fully qualified eHealth professionals (no fit between offline-online

care; shadow-organisation)

Systematic reviews & studies center eHealth research

Need for new approaches to achieve technologies that are human centered, fit for context, and that make sense for all stakeholders

Roadmap for participatory development

Thesis Nijland, 2010 17

Participation of stakeholders for value driven technologies

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Selection actors

Values

Functional requirements

• is there any need for a new system?• what is the added value?• what are the critical design issues?• what are the conditions for implementation?• What are the roles, tasks related to technology ?

What business models provide added value?

Health-technology-development is more than designing, engineering a good “thing” or tool, it is creating an infrastructure for knowledge dissemination, communication and the organization of care

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Persuasive Design to increase adherence

Praise Rewards Reminders Suggestion Similarity Liking Social role

Co-design via social mediaTo develop user-generated content, to know how people talk, think,

what matters...

Co-design of a communication platform– Antibiotic Stewardship Toolkit for hospital staff, primary

care, general public– education, collaboration– awareness & information general public…

– Outbreak management (multi resistant bacteria)

Business Modelling co-creation with stakeholders continuous, reflective process evaluation & implementation

interwoven with development, no afterthought

canvas models; cost/benefits

EURSAFETY HEALTH-NET CROSS-BORDER INFECTION CONTROLAHM van Limburg MSc BEng, MGR Hendrix PhD MD, J van Gemert-Pijnen PhD

eHealth Research: 2.0 Topics for innovation

Innovative research methods for participatory health

monitoring (non)usage (attrition; persistence; user profiles)

international classification system to describe eH-interventions

persuasive design to increase adherence (human centered

design)

co-creation via business modelling (value-driven)

wiki, social media as 2.0 research methods (user generated

content)

multi-level (HOT-FIT) and multidisciplinary focus (social

sciences, medical sciences, engineering)

Thanks..

Contact: dr. J (Lisette) van Gemert-Pijnen

J.vanGemert-Pijnen@utwente.nl

www.ehealthresearchcenter.nl

www.medicine20congress.com