Digital Health From an HCI Perspective - Geraldine Fitzpatrick

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

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]

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

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.

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

Understanding Design Evaluation

What can HCI contribute to Digital Health?

Where are the disciplinary synergies/challenges?

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

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

Neat models/prototypes ----------------- Messy complex world

Understanding the realities of everyday life

Microsoft’s smart kitchen 80 yr old Sam’s kitchen

Understanding the place of technology at home

[Photo courtesy of Stinne Aaløkke Ballegaard]

[Photos courtesy of Stinne Aaløkke Ballegaard]

Using spaces and routines

Understanding everyday strategies Example: medication management

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]

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]

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;

Understanding care & wellbeing as collaborative

[Balaam et al CHI2011; Fitzpatrick et al, WISH2011] [Sketch courtesy of Francisco Nunes]

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)’

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 ACM TOCHI, 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]

§  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


Designing …

User-centred & participatory design methods

Iterative prototyping based on feedback

Attention to usability, feasibility, user experience

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

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 …

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?


“…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.”

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 des ign. 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]

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

Case: Sleep procrastination Supportive ‘Cues’ storyboard


Case: Sleep procrastination Punish me! storyboard


From persuasion, behaviour change to Habits & small steps

http://tinyhabitsacademy.org/

https://blog.fitbit.com/

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

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

Which could induce people to consume less?

[Dowray et al, 2013]

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

Form factor

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]

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

[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]

Who are the technologies for?

[also Hallewell & Fitzpatrick, BHCI13] http://thecreatorsproject.vice.com/en_uk/blog/man-vs-smart-house-a-cautionary-tale

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!

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


http://www.usability.gov/

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?

Evaluation

Qualitative Mixed methods

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.

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

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]

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]

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?

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]

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

§  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


In conclusion


§  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!

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

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

Digital Health from an HCI Perspective -  Bridges needed to enable contributions & address

challenges -  To create solutions that work!

Comments, discussion?

Digital Health From an HCI Perspective - Geraldine Fitzpatrick

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Transcript of Digital Health From an HCI Perspective - Geraldine Fitzpatrick