TOWARDS A COMPREHENSIVE ECOLOGICAL MODEL OF SELF-HARM: INTEGRATING PSYCHOSOCIAL, BIOLOGICAL AND ENVIRONMENTAL

REAL-TIME DATA USING SMARTPHONES AND DIGITAL TECHNOLOGIES

Report on a grant from the Richard Benjamin TrustResearch grant reference number: RBT 1307

1st September 2013 – 30th November 2014

Lisa Marzanowith Andy Bardill, Bob Fields, Kate Herd

School of Science and TechnologyMiddlesex University

with redLoopThe Middlesex Design and Innovation Centre

ACKNOWLEDGEMENTS

Special thanks are due to Andy Bardill, Bob Fields and Kate Herd of Middlesex

University, for their key role in developing new research tools and visualization

techniques. Without their input throughout the project, INSIGHT and the work

summarised in this report would not have been possible. I am also grateful to Juliette

Stebbings for statistical assistance, Stuart Farley, Jonathan Joanes and all the very

talented RedLoop interns who assisted with the project. Thanks are also due to Paul

Moran, David Veale and Nick Grey of King’s College London and the South London

and Maudsley NHS Trust, for helping us conceptualise and plan innovative clinical

applications for this work; and Fiona Starr and Andrea Oskis of Middlesex University,

for all their support and input in relation to clinical and ethical matters.

I am very grateful to the men who participated in this research, and to all the staff who

made this possible by providing additional support and supervision, where needed. To

protect participants’ anonymity, the organization that supported and facilitated this work

will remain unnamed, but this in no way diminishes my appreciation for their wonderful

work – and not just in relation to this project.

Finally, I gratefully acknowledge the funding provided the Richard Banjamin Trust, and

the additional visiting scholar and conference funds provided by Middlesex University.

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CONTENTS

Acknowledgments 2

Summary of the research carried out with the aid of the grant 4

Background to the study 5

Developing ‘INSIGHT’: INdividual Signals mHealth Technology 5

Piloting INSIGHT 7

Advances in knowledge resulting from the research 8

Feasibility of INSIGHT: System compliance 8

Acceptability of INSIGHT: What are people’s experiences of 9digital experience sampling methods?

Other applications of INSIGHT: From research tool to therapeutic tool? 11

Dissemination 15

Conclusions 16

References 18

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SUMMARY OF THE RESEARCH CARRIED OUT WITH THE AID OF THE GRANT

Background to the study

Self-harming behaviour is the strongest risk factor for suicide and an increasingly

common phenomenon occurring amongst young men and women (Hawton, Saunders, &

O’Connor, 2012). However, our understanding of its underlying and reinforcing

mechanisms remains limited, particularly in relation to men (Bowen & John, 2001).

Progress in this field has traditionally been hindered by research approaches that rely on

retrospective self-report, cross-sectional data, and a relatively narrow range of variables.

The main aim of this programme of work was to explore the feasibility of using digital

diary methods and mobile technologies, including smartphones and wearable biosensors,

to investigate the experiences, motivations and concerns of men who self-harm, and a

wide range of factors that may precipitate or maintain their self-harm.

Mobile digital technologies, including smartphones and wearable biosensors, are

increasingly able to gather and integrate multiple streams of real-time behavioural,

physiological and psychosocial data, in precise, unobtrusive and user-friendly ways

(Miller, 2012). This includes personal accounts of affect, cognitions and behaviour

(including via naturalistic speech and visual data, and structured self-report measures),

and automated data about an individual’s whereabouts, activities and physiological

states (e.g., heart rate, sleep, physical exercise, and location). Physiological and

environmental data do not just potentially correlate with and thus triangulate participant

self-report, but can also provide important insights into predisposing biological factors

and diathesis-stress mechanisms implicated in the development and maintenance of

emotional disorders.

Gathering this information, in real time and in naturalistic settings, can help understand

how people's moods, thoughts and bahaviours change within the flow of daily life, and

in response to different events, activities and environments. In addition, compared to

more traditional research methods (e.g., interviews and surveys), mobile digital

technologies (including smartphones) allow individuals to tell their stories in their own

time and space, flexibly and more informally (for example, by writing about their

experiences and/or documenting them using photos or videos). This is likely to produce

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richer information about the meaning, context, and triggers of people's emotions and

behaviour.

Developing ‘INSIGHT’: INdividual Signals mHealth Technology

We are an interdisciplinary team of academics, with expertise in applied psychology,

technology design, computing and visual analytics. Our interest lies in applying robust

mobile and wearable computing technologies to collect detailed 'real time' data in

naturalistic settings, in safe, empowering and impactful ways.

Exploiting recent advances in smartphone technology and wearable biosensors, we

developed and tested a system (“INSIGHT”; figures 1-2) that allows real-time gathering

of multiple streams of qualitative and quantitative data. This novel system comprised of:

A smartphone application (“app”) recording location data and distance travelled,

and allowing participants to complete a regular multi-media diary (“My Diary”)

(including closed questions and free text entries, with the option to add

photographs or videos) of a) daily moods and activities, b) intensity, duration and

contextual features of any self-injurious thoughts and behaviour (including

triggers, motivations and consequences, or alternative behaviours), c) other risk-

taking and impulsive behaviours, and emotional regulation strategies (e.g. binge

eating and drinking), d) flashbacks, e) nightmares, and f) other participant

specific symptoms or concerns (e.g. physical pain, medication compliance,

significant life events, etc.). The app was also linked to a secure Wordpress

Blogging site (also available to participants on other devices, e.g. PCs, tablets),

where participants could post pictures, videos and text about their broader life

histories and experiences, as well as record daily moods and activities (“My

Story”) (figure 3).

Jawbone Up wristband, recording physical activity, sleep quality and duration;

Chest strap and custom-made wearable data logger for continuous measurement

of heart rate (and heart rate variability);

New data visualisation tools to combine and visualize these heterogenous

datasets, to enable functional analyses to be undertaken.

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Figure 1. INSIGHT - System diagram and wearables

Piloting INSIGHT

The system was piloted with a small sample of men (n=5) with current or recent self-harm histories, recruited via a voluntary organization that

supports individuals with personality disorders (including through a 24/7 crisis service). The research was approved by Middlesex University’s

Psychology Ethics Committee, and standard safeguarding and confidentiality protocols were followed. Staff and users at the organization were

consulted about the proposed methods and procedures before the study commenced, and about the suitability of potential participants for the

research. For ongoing risk assessment and support, participants were asked to make regular diary uploads to a secure server, which was

monitored daily by the research team. Semi-structured interviews were carried out at the start, mid-point and end of the study, exploring

participants’ experiences of the research and general well-being through a series of open-ended questions, as well as a modified version of the

Reactions to Research Participation Questionnaire Revised (Newman, Willard, Sinclair, & Kaloupek, 2001) and the Warwick-Edinburgh Mental

Well-being Scale (WEMWBS) (Tennant et al., 2007).

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MAIN ADVANCES IN KNOWLEDGE RESULTING FROM THE RESEARCH

Due to word count limitations, it is not possible to discuss in detail all of the findings of

this project. The following section therefore focuses on what are arguably the most

innovative and potentially impactful advances in knowledge resulting from the research:

findings concerning a) the feasibility of our approach, b) its acceptability, and c) the

potential wider applications of our system of digital measures.

Feasibility of INSIGHT: System compliance

Although it is not possible to generalise from a small pilot study, the work we carried

out with the aid of this grant suggests that it is feasible to use smartphones and wearable

physical computing to gather real-time, ecological data.

Compliance with our battery of measures was good. All participants took part in the

study for at least three weeks (this was the study duration originally agreed with

participants; one man volunteered to continue the study for an additional 28 days;

another participants took part in the study for a total of 79 days). During this time,

participants could make as many “My Diary” and “My Story” entries as they wished,

and received two daily remainders inviting them to make a “My Diary” entry (one in the

morning and one in the evening; at specific times set by participants themselves), but

were instructed to only do so if and when convenient (there was no financial reward for

participating in the study or financial incentive for high compliance rates). In total,

participants made 230 “My Diary” entries, with all participants making at least one entry

on most days, and 209 “My Story” entries (these were mostly text-based, but included

34 videos and eight photos). Participants’ “My Diary” entries provided information

about 92 episodes involving thoughts of self-harm and 21 separate incidents of self-

harming behaviour (see Table 1). It is possible that a younger sample (2 participants

were in their early to mid 20s, 3 in their mid to late 40s) may have made more entries,

and perhaps more video entries, especially if using their own phones rather than a

handset provided by the research team.

Table 1. Summary of “My Diary” and “My Story” entries made by individual participants

Participant Number

Days in study

Days on which My Diary entries made

% Days made My Diary entry

Total My diary entries

Total My Story entries Thoughts of self-harm reported

Self-harm incidents reported

1 79 65 82.28 99 128(117 text; 4 videos; 7 photos)

36.00 15.00

2 21 21 100.00 43 60(30 text+30 videos)

13.00 .00

3 21 13 61.90 15 4(All text entries)

6.00 .00

4 21 18 85.71 36 12(11 text and 1 photo)

8.00 1.00

5 49 35 71.43 37 5(All text entries)

29.00 5.00

Acceptability of INSIGHT: What are people’s experiences of digital experience sampling methods?

Another promising finding of our pilot study is that feedback from both participants and service providers was positive, including in ways that

we had not anticipated. At the end of the study, all five participants stated that they were pleased to have been asked to participate in the research

and would still agreed to do so knowing what this would involve; that participating in the study had been beneficial to them, personally

meaningful and not inconvenient, despite some anxieties about damaging the technology or failing to operate it properly.

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For example, one participant (P5) reported that the study had helped him “express some

of what I’m going through that’s in my head down as data. So it has, yeah, I’ve found it

beneficial [especially] when, after I’ve self-harmed because I don’t know, I sort of put

the self-harm into the diary log or something and I can put my feelings and I really feel

down and like I come up a bit so that’s probably been the best, you know”. Another

participant reported using the digital diary app to vent his frustrations in a safe way,

including when surrounded by other people “who just assume you’re just on facebook or

texting” (“I’m alone but I got my diary to keep me company. I can rant on here and not

get told off or nicked…I like the fact I got a mini haven in my hand; I talk to it like it’s a

mate but it don’t hit me or kick me in the face” (P1)); whilst participant 2 told us that he

planned to invest in his own Jawbone wristband at the end of the research, as this had

helped him with “what I should eat, even as a diabetic…and keeping me in touch with

my sleep patterns and when to go to bed, which is fantastic”. The same participant also

reported watching his own video-diaries back and then showing them to his therapist “so

they can see what I am actually like when I'm feeling depressed and down … I don't

show that side to me. I am just a happy go lucky person but actually in real life I am not.

So again doing the research is helping me again.”

All five participants agreed or strongly agreed that they had gained insight about their

experiences through research participation. Whilst this was not always described as an

easy process (e.g. three participants stated that the research had sometimes made them

think about things they did not want to think about), it was invariably described as

beneficial one. For example, for participant 3 “[the research] it’s made me more aware

of how many times I feel like self-harming. I mean the sleep thing and the walking thing,

that meant nothing to me, but I think seeing how often I felt like self-harming was the big

surprise”. In turn, this had made him reflect on his ability not to act on these thoughts

(“it’s interesting to see how many times I feel like self-harming, which I haven’t”).

Similarly, participant 4 reported that “doing the study made me more aware of how often

I do feel suicidal and how often I get anxious and stuff like that. It made me more aware

of those things…[which] I suppose it can be beneficial because you can go back and see

what you’ve been saying and you can see a pattern and stuff like that…I’ve learnt

something about myself so that’s a good thing.”

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All participants reported that the questions asked had not felt excessively personal, or

had a negative impact on their self-harming thoughts or behaviours. This is consistent

with evidence from studies employing self-report questionnaires (Robinson et al., 2011),

web-based surveys (Muehlenkamp, Swenson, Batejan, & Jarvi, 2014; Whitlock,

Pietrusza, & Purington, 2013) and face-to-face interviews (Rivlin, Marzano, Hawton, &

Fazel, 2012) that most individuals are not negatively affected by participating in suicide

and self-harm research, and many may in fact experience beneficial effects (Biddle et

al., 2013).

Other applications of INSIGHT: From research tool to therapeutic tool?

What became increasingly apparent as the study progressed was that the system we had

originally conceived and developed as a research/data gathering tool may also have

clinical utility and applications. Accurate assessment and monitoring of the key

variables of interest in our study have also long been recognised as important

components of many intervention approaches, particularly for relapsing psychological

problems. Indeed, patient-led monitoring of symptoms is now standard practice in many

areas of medicine and serves a wide variety of functions, from monitoring of symptom

severity (e.g. peak expiratory flow in asthma, blood glucose testing in diabetes) through

to monitoring of treatment side effects.

Previous research has shown that repeated self-monitoring can have therapeutic effects

and help reduce symptoms of depression (Wichers et al., 2011) and posttraumatic stress

disorder (Ehlers et al., 2003), possibly by helping clinicians and patients themselves to

understand the longitudinal course of their symptoms and identify personalised relapse

signatures. In addition, monitoring of context, antecedents and consequences is key in

functional analyses of maladaptive behaviours and cognitive processes, and thus

potentially instrumental in modifying behaviour (Haynes & O’Brien, 1990). However, in

the area of mental health, symptom and behavioural monitoring are generally performed

retrospectively and are reliant on self-report.

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Recent technological advances and data visualization techniques mean that it is not only

possible to monitor psychiatric symptoms in real time and in naturalistic settings, but

that we are now able to visualize - at individual and aggregate level - how key variables

(e.g. mood, sleep, location, etc.) fluctuate over time, both independently and in relation

to each other (see figures 4-6). Not only is this important for analyses of

psychophysiological micro-processes in real life (within- and between-subjects) (as for

example shown in figure 6), but it also offers promise for an intelligible system of

personalised symptom monitoring and feedback, potentially suitable for use by patients

and treatment providers.

The clinical benefits of this approach are not only in the potential for increased clinical

insight into distressing emotions and behaviours, but also in shaping timely personalized

interventions. These may include interventions delivered (at least partly) using

smartphones. Examples include real-time supportive and psycho-education SMS text

messaging or verbal feedback; medication and appointment reminders,

telemedicine/remote video-consultation, bio-feedback, ‘avatar therapy’ and a range of

self-management tools, including behavioural activation for depressive symptoms and

mindfulness-based exercises to enhance emotion regulation and distress tolerance.

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Figure 6. Changes in heart rate and heart rate variability during a reported incident of self-harm (not seemingly explained by physical movement)

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DISSEMINATION TO ACADEMIC AND NON-ACADEMIC AUDIENCES

The work developed with the aid of this grant was presented at the 9th Annual

Conference of the International Society for the Study of Self-Injury (ISSS) (Chicago,

June 2014); and the Lancet Psychiatry & Centre for Suicide Research (University of

Oxford) Symposium on Suicide and Self-Harm Research (Oxford, November 2014).

In turn, these have led to invitations to present at the Healthcare Apps 2015 Summit

(http://www.healthcareappseurope.com), a conference aimed at bringing smartphone app

developers into contact with the needs of healthcare (London, April 2015); and to submit

a Viewpoint to the Lancet Psychiatry (currently in preparation).

Further dissemination to academic audiences include an invited talk at the University of

Westminster’s Research Seminar Series (April 2015), and a poster presented at the

Middlesex University School of Health and Education Symposium on Supporting

Research and Knowledge Transfer Development (June 2014).

In addition, our work was featured in a BBC news article on technological innovations to

understand and reduce stress and anxiety (http://www.bbc.co.uk/news/business-

29742908) and a subsequent BBC breakfast live radio interview (30 October 2014;

http://www.bbc.co.uk/programmes/p028lwy8). It also features in “Self-injury,

interrupted: mobile technology as therapeutic accessory”, a fact sheet on mobile

applications in the context of self-injury, which is going to be published as a resource

paper on the Cornell University Program on Self-Injury and Recovery website

(http://www.selfinjury.bctr.cornell.edu).

We also set up - and continue to update and maintain - a project website describing our

tools and approach (Marzano, Lisa, Andy Bardill, Bob Fields, and Kate Herd (2014).

“INSIGHT. Individual SIGnature mHealth Technology” - http://insight.mdx.ac.uk/).

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CONCLUSIONS

Our pilot study suggests that it is feasible to use smartphones and wearable physical

computing to capture multi-dimensional real-time, ‘hard to get’ data, including data that

are user-centered, but not exclusively reliant on self-report. Modern smartphones allow

gathering of quantitative, qualitative and visual data in flexible and user-friendly ways.

This offers much promise for rich analyses of psychophysiological micro-processes in

real life, including in episodic single case analyses to identify behavioural, physiological

and affective symptom trajectories and personalised relapse signatures for self-harm, and

the contexts and chain of events in which they occur. In addition, using big data

analytics, infographics and StoryDashboards it is now possible to create clear and

interactive visualisations of these multiple streams of data, in real-time. Such visual

feedback may facilitate personal reflection, clinical insight and behaviour change, and

prompt timely intervention. Thus, subject to further testing and development, our

smartphone-based data gathering system may (also) function as a useful transdiagnostic

tool for a) multi-dimensional monitoring (capable of identifying individual relapse

signatures); b) real-time feedback (via data visualisations which users can share with

their clinicians); and c) timely personalised relapse prevention or early intervention via a

range of customizable options, when a relapse signature or early warning trigger is

detected (by the user, clinician or the system itself).

With the rapid expansion of technology in this field, further promising areas include

automatic emotion recognition (based on facial expressions, vocal prosody or

multimodal approaches) and automated social proximity sensing via smartphone

Bluetooth. More work in needed to establish whether these new e-research tools,

including wearable sensors developed for the consumer market, are sufficiently precise

for scientific use.

There remain a number of challenges in integrating technological innovations in mental

health research and practice, not least privacy and safety issues, debates around how to

standardize, regulate and evaluate digital systems and devices, and unanswered

questions about maximising user compliance, and facilitating behavior change in safe

and effective ways. This adds to the technical and statistical challenges of analyzing and

visualising high-density multi-modal and multi-scale data in real-time, whilst also

ensuring that these data are valid and reliable. In addition, our findings suggest that

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digital technologies can create a new set of dilemmas for mental health researchers and

practitioners, as the boundaries between research, monitoring and clinical intervention

become increasingly blurred. Whilst this may not necessarily be problematic, it

reinforces the call for a better understanding of the effects and experiences of using

these new research/intervention tools, and for academics, clinicians and service users to

work in partnership.

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REFERENCES

Biddle, L., Cooper, J., Owen-Smith, A., Klineberg, E., Bennewith, O., Hawton, K., & Gunnell, D. (2013). Qualitative interviewing with vulnerable populations: Individuals’ experiences of participating in suicide and self-harm based research. Journal of Affective Disorders, 145(3), 356–62. doi:10.1016/j.jad.2012.08.024

Bowen, A. C. L., & John, A. M. H. (2001). Gender differences in presentation and conceptualisation of adolescent self-injurious behaviour: Implications for therapeutic practice. Counselling Psychology Quarterly, 14(4), 357–379.

Ehlers, A., Clark, D. M., Hackmann, A., McManus, F., Fennell, M., Herbert, C., & Mayou, R. (2003). A randomized controlled trial of cognitive therapy, a self-help booklet, and repeated assessments as early interventions for posttraumatic stress disorder. Archives of general psychiatry, 60, 1024–1032.

Hawton, K., Saunders, K. E. A., & O’Connor, R. C. (2012). Self-harm and suicide in adolescents. The Lancet. doi:10.1016/S0140-6736(12)60322-5

Haynes, S. N., & O’Brien, W. H. (1990). Functional analysis in behavior therapy. Clinical Psychology Review. doi:10.1016/0272-7358(90)90074-K

Miller, G. (2012). The Smartphone Psychology Manifesto. Perspectives on Psychological Science. doi:10.1177/1745691612441215

Muehlenkamp, J. J., Swenson, L. P., Batejan, K. L., & Jarvi, S. M. (2014). Emotional and behavioral effects of participating in an online study of nonsuicidal self-injury: An experimental analysis. Clinical Psychological Science. doi:10.1177/2167702614531579

Newman, E., Willard, T., Sinclair, R., & Kaloupek, D. (2001). Empirically supported ethical research practice: The costs and benefits of research from the participants’ view. Accountability in Research, 8, 309–329.

Rivlin, A., Marzano, L., Hawton, K., & Fazel, S. (2012). Impact on prisoners of participating in research interviews related to near-lethal suicide attempts. Journal of Affective Disorders, 136(1-2), 54–62.

Robinson, J., Pan Yuen, H., Martin, C., Hughes, A., Baksheev, G. N., Dodd, S., & Yung, A. R. (2011). Does screening high school students for psychological distress, deliberate self-harm, or suicidal ideation cause distress - and is it acceptable? An Australian-based study. Crisis, 32, 254–63.

Tennant, R., Hiller, L., Fishwick, R., Platt, S., Joseph, S., Weich, S., & Stewart-Brown, S. (2007). The Warwick-Edinburgh Mental Well-being Scale (WEMWBS): development and UK validation. Health and Quality of Life Outcomes, 5, 63.

Whitlock, J., Pietrusza, C., & Purington, A. (2013). Young adult respondent experiences of disclosing self-injury, suicide-related behavior, and psychological distress in a web-based survey. Archives of Suicide Research, 17, 20–32.

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Wichers, M., Simons, C. J. P., Kramer, I. M. A., Hartmann, J. A., Lothmann, C., Myin-Germeys, I., & van Os, J. (2011). Momentary assessment technology as a tool to help patients with depression help themselves. Acta Psychiatrica Scandinavica, 124, 262–272.

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