Keynote presentation at What Works in Digital Health? University of Glasgow, 23rd-24th July 2015.

1. Digital Health from an HCI Perspective
- Contributions & challenges
Geraldine Fitzpatrick
Institute of Design and Assessment of Technology – HCI Group
Vienna University of Technology (TU Wien)
<geraldine.fitzpatrick @ tuwien.ac.at>
@geri_fitz
What Works in Digital Health Technologies
– Bridging the Disciplinary DivideGlasgow. 23 July 2015
Image: https://commons.wikimedia.org/wiki/File:Merivale_Bridge_and_Go_Between_Bridge.JPG

2. Scoping ‘Digital Health’
Prevention, promotion
Health & well being Chronic disease
Self care
Apps Devices
Smart objects Smart spaces
Person & everyday life wellbeing
Eg 100,000 health apps!
[JMIR: mHealthApps: A Repository and Database of Mobile Health Apps - 2015]

3. Courtesy of Christina Mortberg, Uni of Oslo
At the computer
In everyday life
User experience
Designing ‘being human’
Usability
Designing interfaces
HCI: changing scope of concerns
Inherently
multi-inter
disciplinary
Google.com/glass

4. HCI & Self Care: A Literature Review
[Years 1983 – 2013; 795 papers => 29 included in review]
§ HCI goals related to self care technologies:
– Theoretical: understanding how technology can support
– Practical: provide better tools for managing care
§ Design approaches
– User centred and participatory design;
– Ethnographically inspired design
§ HCI strengths:
– Engaging with complex contexts and relationships
§ Multiple actors, settings, resources
– Qualitative methods
– Design-oriented studies to later small scale feasibility studies
Nunes, Verdezoto, Fitzpatrick, Kyng, Gronvall, Storni.
Self-care Technologies in HCI: Trends, Tensions & Opportunities. To appear in TOCHI.

5. User Centred
Design
Case:
Motivating Mobility
Project
HCI, Physios
SW engineers
Home visits &
interviews
Therapy centre, stroke clubs
Physiotherapy treatments
Qualitative analysis Personas & storyboards
Prototypes & workshops
Co-design &
in-home
deployments
1 mth
Eval: Physio & HCI

6. Understanding
Design
Evaluation
What can HCI contribute to Digital Health?
Where are the disciplinary synergies/challenges?

7. Bridging for Digital Health
§ HCI can contribute strength in
– ‘User’ perspectives, understanding everyday contexts, values, etc
– Building ‘interesting’ usable applications
– Understanding how/why tech used in real practices
– Critiquing the ‘rational individual’ hidden assumptions
However…
§ Need to move to having real impact and value
– Evidence-based design decisions – in the ‘large’ and ‘small’
– Embracing all concerns & levels of scale
– Embracing clinical outcomes as well as diversity of individual lived
experiences

8. Understanding
Qualitative methods
– in situ ‘home’ tours, observations, interviews, diaries etc
Mixed methods
- ‘technology probes’, data logging, surveys etc
For informing design & for evaluating use in practice

9. Neat models/prototypes ----------------- Messy complex world
Understanding the realities of everyday life
Microsoft’s smart kitchen 80 yr old Sam’s kitchen

10. Understanding the place of technology at home
[Photo courtesy of Stinne Aaløkke Ballegaard]

11. [Photos courtesy of Stinne Aaløkke Ballegaard]
Using spaces and routines
Understanding everyday strategies
Example: medication management

12. Understanding how care is entangled with life
Example: Managing medications
Expertise through trial and error
Planning activities around
medication effects
Planning medications around
activities
Juggling doses,
… pushing the boundaries
Cases: Diabetes [eg Storni; O’Kane et al]; Parkinsons Disease [Nunes ]
[Photo courtesy of Francisco Nunes]

13. Negotiations and trade-offs
Case: Parkinsons Disease [Francisco Nunes – study of Parkinsons UK forums]
“(...) I know that there are positives from taking DA’s
[Dopamine Agonist]. Physically I felt great whilst taking them,
the mental damage [compulsive behaviours] however was
another story.
I had to make a choice...stay on the drugs and lose my family
or come off them.
I put my family above my own ‘feel good factor’. (...)”
[glenchass]

14. Understanding how care is entangled with life
Example: Impression management in different contexts
Aarhus et al, ECSCW2009; Nunes et al to appear TOCHI; O'Kane, et al. CHI2015.
Diabetic Kit Photo courtesy of Stinne Aaløkke Ballegaard;

15. Understanding care & wellbeing as collaborative
[Balaam et al CHI2011; Fitzpatrick et al, WISH2011]
[Sketch courtesy of Francisco Nunes]

16. HCI qualitative studies - insights
How people practically manage their H&WB and self-care
§ As situated negotiated practices
– Deeply entangled in social, spatial, cultural, personal contexts
– Negotiations & trade-offs between competing concerns, values etc
§ Ultimately not so much about clinical indicators but about
living well
– Challenges ‘rational individual decision makers’
§ Satisficing care to maximise quality of life
– Extends ‘unit of analysis’ from individual to ‘social practice(s)’

17. Moving to an ‘everyday practice’ perspective
Case: making healthy food
choices / reducing food waste
‘Practices’ understaning
inspires different technology
design approaches
From numbers/metrics,
persuasion/change
to support for situated
reflection / awareness
Ganglbauer, E. et al. 2013. From gardens to fridges: Negotiating food waste using a practice lens to inform design. In ACMTOCHI, 20:2
Reitberger,W., et al. (2014) Situated and Mobile Displays for Reflection on Shopping and Nutritional Choices. In Personal and Ubiquitous Computing, 18:7
FridgeCam
Nutriflect
[Drawing on Shove, Reckwitz and others]

18. § Contribute strong qualitative user-centred methods
– Understanding ‘everyday practices’, values etc
– Understanding how/why people (might) use technologies
Work to do:
§ Engaging more with clinicians and other stakeholder
perspectives as part of research
§ Conducting research with cross-disciplinary methods/teams
§ Limited scalability
§ Communicating understandings
– Collating conceptual insights from meta analysis of case studies
– Sensitising concepts, practices
Bridging for Digital Health

19. Designing …
User-centred & participatory design methods
Iterative prototyping based on feedback
Attention to usability, feasibility, user experience

20. New ‘HCI’ prototypes for self care / chronic care
Eg Mahi for diabetes mgmt
[Mamykina et al 2008]
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eg eDiary – Diabetic pregnant women
[Aarhus et al, 2009]
& many more …
Case: Diabetes

21. Many ‘HCI’ applications for health & well being
UBIFIT – promoting activity
[Consolvo et al 2008]
Agile Life – active aging
[Grosinger, Vetere, Fitzpatrick 2012]
Pass the ball
[Rooksby, Most, Morrison, Chalmers2015]
Case: activity promotion
& many more …

22. Contribute
§ Good at user-centred designing / building ‘usable’
technology
§ Getting better at informing design from understanding
people and their contexts – useful technology
But what evidence base to support
§ The myriad small decisions that designers make?
§ What theories are relevant?
§ How to operationalise them in design?
Bridging for Digital Health

23. “…practitioners should be cautious when
promoting the use of apps as it appears most
provide health-related information
(predisposing) or make attempts at enabling
behavior, with almost none including all
theoretical factors recommended for behavior
change.”

24. Role of theories of motivation / behaviour change
for design?
§ What parts of the process or solution do theories
relate to?
Case: understanding motivation (Motivating Mobility)
Theories Related concepts Category Related questions / statements Means of enquiry
Needs ERG
Self determination
X&Y Affective Arousal. Job
design. Reinforcement.
Social learning
Existence Relatedness
Personally meaningful things
Things avoided / attracted to
Needs
Personal affect-
1. relatedness
Games I like to play.....
Most important possessions.....
The best bit of my day is.......
The worst bit of my day is........
My favourite things …..
Top trumps game
Clay impression
Diary prompt
Diary prompt
Photo prompt
Intrinsic motivation Intrinsic motivation
aesthetic
Personal affect-
2. sensory
curiosity
I like to listen to....
I love the smell of
Things I love to touch....
I love to taste
I love to see
Sea shell
Flower
Tactile strips
Choc in a box
Magnifying glass
Flow theory
Motivator –hygiene
X&Y Expectancy
Needs
Arousal Drive
Enjoyment Immersion
Powerful positive affect
Quality of positive experience
Comfort/ discomfort
Valence Satisfaction
Personal affect-
3. enjoyment
I lose all sense of myself when...
My favourite pastime is
I am happiest when............
My best day ever
.........made me laugh out loud
Diary
Top trumps game
Diary
Red letter days
Smiley toy
Needs
Motivator-hygiene
Drive
Self esteem
Status
Self image
Personal affect-
4. self esteem
I feel good about....
I feel bad about.............
The best bit of me is.
The worst bit of me is.....
I am proudest of...................
Positive diary
Negative diary
Body map
Body map
Medal
Self determination
Flow Arousal
Job design X&Y
Internal-external control
Control
Autonomy
Freedom of spirit
Control
Self regulation
Personal affect-
5. autonomy
By myself I ........
Struggled against the tide….
Reaching the shore…….
It is a real burden to have to...
My dream
Positive diary
Toy swimmer
Toy swimmer
Negative diary
Scented pillow
[Axelrod et al, 2011]
[Axelrod, Fitzpatrick et al, PervHealth 2011]

25. How to operationalise & implement theories?
§ What theory or strategy to use?
– TTM, HBM, SDT …
– Persuasion, nudge, reflection … social proof, loss aversion,
competition, gamification, scientific proof …
§ When, why, how, for whom? ‘One size’ or tailor to profile?
[Axelrod et al, 2011]
Dominik Hartl – MSc project on sleep procrastination

26. Case: Sleep procrastination
Supportive ‘Cues’ storyboard
Dominik Hartl – MSc project on sleep procrastination

27. Case: Sleep procrastination
Punish me! storyboard
Dominik Hartl – MSc project on sleep procrastination

28. From persuasion, behaviour change to Habits & small steps
http://tinyhabitsacademy.org/
https://blog.fitbit.com/

29. Evidence-based design decisions for feedback?
Feedback: type, granularity, frequency?
Approach: graph, numbers, trends, abstract?
Language, content?
[Balaam et al CHI2011; Fitzpatrick et al, WISH2011]
Case: rehabilitation / self exercise at home

30. Language: Which one collected more in donations?
[Guéguen & Lamy, 2011]
“Women students in business trying to organise a humanitarian
action in Togo. We are relying on your support”
DONATING
=
HELPING
DONATING
=
LOVING
€1.04€0.62 €0.54

31. Which could induce people to consume less?
[Dowray et al, 2013]

32. Rhythms, patterns of use?
§ Same core technical solution – different application domains
– E.g., Activity for fitness vs cardiac rehab vs Parkinsons
What dimensions matter? Design (& eval) implications?
UBIFIT – promoting activity
[Consolvo et al 2008]
Agile Life – active aging
[Grosinger et al 2012]
Pass the ball
[Rooksby et al 2015]
Pedometer

33. Form factor

34. How to design to ‘fit in’?
Case: rehab/self exercise at home
Fitting into spaces, aesthetics and routines
[Balaam et al CHI2011; Fitzpatrick et al, WISH2011]

35. Thinking of tangible devices …
Influence of colour & materiality on perception of food
[Harrar & Spence, 2013] [Spence et al, 2012]
Eg:
Plate: Red tends to reduce food intake
Utensils: Food sweeter on smaller spoon;
saltiest from knife

36. [Coats image CC: |Author=[http://www.flickr.com/people/23453214@N04 Pi.] from Leiden, Holla]
Influence of clothing on attention
– ‘Enclothed cognition’ [Adam & Galinsky 2012]
Influence of weight/texture on interpersonal judgements
[Ackerman et al 2010]
Heavy = more important
Rough = more difficult
Hard = more rigid
Influence of size of Electronic Consumer
Devices on posture & behavior [Bos &
Cuddy 2013]
Influence of temperature on interpersonal
judgements
[Williams & Bargh, 2008; Ijzerman & Semin, 2009]

37. Who are the technologies for?
[also Hallewell & Fitzpatrick, BHCI13]
http://thecreatorsproject.vice.com/en_uk/blog/man-vs-smart-house-a-cautionary-tale

38. Clinical accuracy, reliability?
Case: Diabetes
Smartphone apps for calculating insulin dose: a systematic
assessment [Huckvale et al, BMC Medicine, May 2015]
§ Systematic issues affecting safety and reliability
“67% (n = 31/46) of apps carried a risk of inappropriate output dose
recommendation that either violated basic clinical assumptions (48%, n = 22/46) or did not
match a stated formula (14%, n = 3/21) or correctly update in response to changing user
inputs (37%, n = 17/46).”
The designer’s cop-out of the clinical disclaimer!

39. Contribute
þ Good at user-centred designing / building technology
But … are they ‘good’ solutions?
Need
§ Interdisciplinary collaborations
– To navigate psychology/social science/health behaviour literature, to
inform design choices
– To do better product design
§ Principled evidence-based guidelines
– For the ‘small’ decisions as well as the big ‘theory’ ones
Bridging for Digital Health

40. http://www.usability.gov/

41. And much more … for later discussion
e.g., Ethical, legal, challenges
Whose ideals, standards are we enforcing through design?
How are we conceptualising H&WB?
How do we code for privacy/control?
Who owns the data, who can access the data?
Free apps vs commercial agendas?

42. Evaluation
Qualitative
Mixed methods

43. HCI & Self Care: A Literature Review
[795 papers => 29. Years 1983 – 2013]
§ Evaluation Approaches
– Most studies explorative, design & experience oriented
§ Short term evaluations – small number of participants
§ Long term evaluations – weeks-months
§ Aimed at how people use the system and effect
§ Rarely assessed impacts on clinical outputs or physiological
measures
– Some RCTs, usually in collaboration with clinical partners
Nunes et al. Self-care Technologies in HCI: Trends, Tensions & Opportunities. To appear in TOCHI.

44. Case: Motivating Mobility
Process & publication challenges
• HCI: engagement, acceptance, use – proof of concept
• logs, interviews, observations
• Physios: functional outcome measures - solution
• pre-post standardised tests (Fugl-Meyer, Teler, Motivation for therapy, PIADS)
[Balaam et al CHI2011; Fitzpatrick et al, WISH2011]
4 Participants – convenience sample; co-design; 4 wk in-home deployment

45. Case: MONARCA:
treatment and prediction of bipolar disorder episodes
§ Multi-disciplinary collaboration
§ Participatory design iterations, 3 clinical trials (v1 & v2), RCT (v1, 2 yrs)
[Frost et al, Ubicomp2013]http://www.monarca-project.eu [Images courtesy of Mads Frost]

46. How to allow for emergent needs, ongoing design in use?
§ Despite participatory design & pilots
Use changes understanding of needs
Appropriation processes
[Frost et al: Ubicomp2013; JMIR 2015]

47. How to integrate diverse evaluation perspectives?
[eHome Project]
[from 3millionlives.co.uk - 2014;
was WSD; now Technology Enabled Care Services ]
Critical sociology perspectives: Eg
Technology perspectives:
Clinical outcome perspectives:
HCI People/experience perspectives:
Aceros, Pols & Domenech (2014). Where is grandma?
Home telecare, good aging & the domestication of later life.
Technological Forecasting & Social Change.
Sanders, et al. (2012) Exploring barriers to participation & adoption
of telehealth and telecare within the Whole System Demonstrator
trial: a qualitative study. BMC.Health Serv.Res.
Mort, Roberts, &Callen. (2012) Ageing with telecare:
care or coercion in austerity? Sociol.Health Illn.
Organisational change perspectives:
The outcomes
important to
patient’s?

48. How to explain diverse responses, choices, experiences?
The performative work of self care:
Pressure of increased personal responsibility for health and
well being?
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eDiary – Diabetic pregnant women sharing information at
the clinic [Aarhus et al, ECSCW2009]
eDiary - share
information e.g. videos
of appointments
[Aarhus et al. 2009].
[Images courtesy of Stinne Aaløkke Ballegaard]

49. Evaluation tensions
§ HCI contributions - Understanding why/how
– Technologies and outcomes not given … as installed
§ Ongoing design of tech & practices in/through use
§ Diverse appropriation processes
But
§ Prototype-product evaluation tensions
§ Evidence-based --- (individual) experience-based tensions:
– negotiating iterative design/evaluations, diverse perspectives &
experiences & outcome-based evaluations

50. § Calls from both HCI and clinical areas for new evaluation:
– Field studies of appropriation over the long term
§ For all stakeholders – broad ‘unit of analysis’
– Realist evaluation [Pawson & Tilley 1997] conditions, contexts, processes by
which outcomes achieved or not
§ Relating appropriation processes & outcomes
– Modified realist evaluation approaches
– Help lead to design & practice guidelines
§ HCI contribute sensor/mobile technologies to understand
– contextual/behavioural data and variations to help explain differences
in outcomes
Bridging for Digital Health

51. In conclusion

52. Bridging for Digital Health
§ HCI strong in
– ‘User’ perspectives, understanding everyday contexts, values, etc
– Building ‘interesting’ usable applications
– Understanding how/why tech used in real practices
– Critiquing the hidden assumptions of the ‘rational individual’
However…
§ Need to move to having real impact and value
– Evidence-based design decisions – in the ‘large’ and ‘small’
– Embracing all concerns & levels of scale
– Embracing both clinical outcomes & diversity of individual lived
experiences
Calls for disciplinary bridges & collaborations!

53. Bridging Disciplinary tensions
§ Research approaches
– Paradigmatic assumptions
– Funding models
– Timeframes
– Numbers of participants
– What is a ‘trial/study’
§ Publication models
– Authorship
– Methods description, theory
– Contribution

54. What does bridging mean?
Making it easier to
find what is needed
in other disciplines?
‘Packaging’ disciplinary
contributions to make them
more accessible for other
disciplines?
Trans/inter disciplinary
collaborations & teams?
Left image source: https://www.flickr.com/photos/jaredlwong/5459507646

55. Digital Health from an HCI Perspective
- Bridges needed to enable contributions & address
challenges
- To create solutions that work!
Comments, discussion?