SELF-MANAGEMENT BEYOND THE SELF by Ross McIntosh

Master of Research: Design, Health & Care

SELF-MANAGEMENT BEYOND THE SELF Participatory design practice towards preferable diabetes self-management principles

RESEARCH OVERVIEW

SYNOPSIS This practice-based research project explored how participatory design can help discover the barriers and facilitators of self-management practice for type 1 diabetes. From conducting interactive interviews and a participatory workshop with users of self-management devices, user-centred design principles were established to develop preferable relationships towards digital self-management practice.Â

This MRes research has been submitted as a practice-based thesis with a portfolio of practice. This overview document communicates the highlights of the research process, but for richer contextual insight, it is recommended to read the full MRes thesis/portfolio through the RADAR link on page 32.

CONTENTS BACKGROUND RESEARCH QUESTION AIMS & OBJECTIVES METHODOLOGICAL PROCESS INTERACTIVE INTERVIEWS PARTICIPATORY WORKSHOP SUMMATIVE FINDINGS PRINCIPLES CONCLUSION

1 5 7 9 11 17 23 25 31

BACKGROUND This MRes research project was inspired by my MDes NHS 24: Alternative Now live project proposal (McIntosh et al., 2018), the Connected Community initiative utilised condition-specific Internet of Things (IoT) health monitoring devices through new Community Contributor interface roles, to establish health-centred citizen communities towards an innovative preemptive care strategy. This concept aimed to fulfil the Scottish Government’s 2020 Vision of an integrated health system with a focus on “prevention, anticipation and supported self-management” (2013). This proposal was targeted towards frequent and high-intensity users of NHS services, like those with long term conditions such as diabetes, to prevent avoidable primary care admissions. 1

INTERVENTION

Targeted citizens would be prescribed condition-specific IoT healthcare devices to provide consistent background tracking and localised responding. This pre-emptive response could help citizens who would otherwise struggle to evaluate when to reach out for urgent or critical need. By anticipating and preventing these instances, NHS services can be better optimised. Although the proposal and its pre-emptive care strategy were well received, this concept posed many ethical considerations, especially around constant IoT monitoring concerns and interface role intervention, as to how user relationships would be affected towards digital self-management devices. As such, there was an opportunity for design innovation to influence these technological tensions towards preferable futures.

PREFERABLE FUTURES?

TIME

RESEARCH QUESTION For this practice-based research project, I wanted to explore how participatory design practice can help discover the relational considerations of digital type 1 diabetes self-management devices, such as; trust, agency, responsibility and accountability of management beyond the self, to reveal preferable user-centred design principles for long term condition innovation. Type 1 diabetes was chosen as a contextual vehicle for this inquiry due to the symbiotic relationship and experiential insight those who self-manage this condition have with their devices to check their blood sugar levels and administer insulin every day with digital self-management devices such as a flash/continuous glucose monitor and/or an insulin pump device. 5

How help d of

i c

methodological approach

design opportunities

w can participatory design practice discover the barriers and facilitators type 1 diabetes self-management beyond the â&#x20AC;&#x2DC;selfâ&#x20AC;&#x2122;?

innovation challenge

contextual focus

AIMS & OBJECTIVES As such, I explored current practice for type 1 diabetes self-management with participants using digital devices, such as a flash/ continuous glucose monitor and/or an insulin pump, through semi-structured interviews to discover the barriers of using these digital selfmanagement devices in contextual reality. I then framed the barriers of type 1 diabetes self-management practice through situational stakeholder mapping with participants to define key facilitators for trusting relationships beyond the self. I lastly developed user-centred selfmanagement design principles for the long term condition industry through a participatory workshop to help develop preferable relationships towards prospective digital selfmanagement products and services. 7

To e curren for type manag userâ&#x20AC;&#x2122;s re with the

Throug interv disc experie with s devic aďŹ&#x20AC;e be

explore nt practice e 1 diabetes gement and elationships eir devices.

To frame the barriers and facilitators of type 1 diabetes selfmanagement beyond users and their devices.

gh semi-structured views, this research covered the lived ence of participants self-management ces and how they ect relationships eyond the self.

To co-create self-management design principles with a sample of participants with type 1 diabetes.

Through conducting situational stakeholder mapping with participants, this research deďŹ ned key facilitators for relationships towards the development of a synthesised relational stakeholder map.

Through a participatory workshop, this research developed a series of generative design activities towards the delivery of user needs and design considerations for future digital health products and services.

METHODOLOGICAL PROCESS

INIT

GENERATIVE METHODS

Through a participatory design methodology, I utilised Spinuzzi’s ‘participatory design process’ (2005) to frame my generative research methods. For the interactive interviews sessions, I undertook semi-structured interviews and an interactive situational mapping activity with six individual participants to create a synthesised relational map through situational analysis. Afterwards, I facilitated a participatory workshop with three collaborative participants featuring generative activities, building on the insights of previous fieldwork, towards the development of preferable self-management principles through thematic analysis. Participatory design practice was used for this study as it considers end-users of a contextual inquiry as “experts of their lived experiences” (Sanders, 2002: 8)

Semi-struct Interview

SPINUZZI’S PARTICIPATORY DESIGN PROCESS

TIAL EXPLORATION

PROTOTYPING

DISCOVERY PROCESS

NTERACTIVE INTERVIEWS

PARTICIPATORY WORKSHOP

1 2 3 4 5 6

tured ws

Situational Maps

SITUATIONAL ANALYSIS

Relational Map

Validation & Co-Analysis

Provotype Generation

Alternative Now Interventions

THEMATIC ANALYSIS

Spinuzzi, C. (2005) The Methodology of Participatory Design. Technical Communication (Washington), 52(2), pp 163–174.

INTERACTIVE INTERVIEWS Semi-structured Interviews For the interactive interviews, I designed engagement tools such as a semi-structured interview guide that allowed me to generatively question participants to explore the lived experience of managing diabetes and discover their relationships with current selfmanagement devices as well as their wider health network. To capture participantâ&#x20AC;&#x2122;s health network, I designed a stakeholder mapping tool that will enabled me to visually map selfmanagement situations with participants by laying out influential stakeholders between people, products and services to provoke analysis of relations towards interactions, trustpoints and opportunities as a discussion driver. 11

tured

Semi-Struc

Part 1: ur d g you and yo Understandin

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So tell me ab Why?

ily? W scribe your fam ur h Could you de yo ? What were childhood like nt to be when y u wa What did yo

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w? W you doing no So what are curr u are doing to do what yo

wou words, how In your own d w would you diabetes? Ho led ow ced or kn not experien

re u tell me mo So could yo h Type 1 dia diagnosed wit gnosi dia ur yo to What led time?

stions

Que d Interview

devices Part 2: ionship with g your relat Understandin

diabetes

? Where? What? When

Part 3: th network ur wider heal Exploring yo

e 1 Diabetes ging your Typ w was mana r prick’ blood Back then, ho thods (‘finge me l na tio uld you give en injections)? Co through conv rs and insulin glucose monito when this was difficult? of any examples

ur What was yo interests? hobbies and ? up w gre you

to contributes o/what else ur devices wh [Introduce stakeholder Alongside yo tes ment? be ge na dia ur ma yo in your diabetes do they play l] What role mapping too nt and why? manageme

se ns have aro complicatio what diabetes them? What would have If I could ask, ed us ca What has in the past? m? prevented the

at has

ey till now? Wh

ur motivation

What was yo rently?

e your uld you defin are people who describe it to condition? dgeable of the

you became e about how you? at age were abetes? Wh you feel at the did w Ho is?

s Glucose a Continuou devices and you have Pump? Which So I underst or an Insulin d/ es/first an M) t these devic ge Monitor (CG u g yo did When rney to gettin process/jou do you have? What was the tations meet reality? impressions? ec exp ur Did yo these devices? with your l day in a life How do ibe a typica scr de your devices? Could you ge na ards ma u w do yo d mentally tow devices? Ho otionally an em lly, ca ysi you feel ph your devices? ologies these techn ational were gement betes mana How transform entional dia nv fits? How co to be d ntages/ ne compare va ad the on/ at are your percepti practices? Wh did it change u… yo ct pa ? im did this s diabetes ard tow ok tlo behaviour/ou M/Insulin with your CG ationship like l devices more than rel ur yo ita What is dig se the st u tru trust these Pump? Do yo at makes you l? Why? Wh thods? conventiona n manual me tha re mo s’ ng connected ‘thi

we map your onships, could most trust? about relati at do you So thinking wh o/ Wh ections? current conn ur reasoning? u explain yo And could yo this twork, does ur health ne meet u think of yo ne/everything What do yo u ? Does everyo yo lity ng rea t lpi ec he map refl ir role in ions/play the points) What could be your expectat indiabetes? (Pa manage your y? d wh improved an at network, wh role in your se be? create a new uld its purpo If you could wo at e en Wh ? erv int e do would this rol connect to your devices/ they How would preferably? betes future of dia n, what is the reas? In your opinio Artificial panc nt? me ge mana

self-

ferable future scribe a pre

“Its very important to understand the condition well and at least have a base understanding of the human biological processes as well as understanding what the device is doing, rather than just following the device alone, like that will just manage it for you.” - TD

uld you de And lastly, co betes? world for dia

“I cannot explain how confident the CGM makes me feel… I don’t walk around terrified anymore! When my CGM got taken away from me, things started to slip as I didn’t have any safety net. At times like that I couldn’t even concentrate on managing myself, nevermind my diabetes.” - SM

“This is why I need help with all of this… its so hard to keep up with technology now a days! Things change so fast and can be confusing. But I have a few friends who have one of those [Freestyle Libre] devices and her partner can see all the results which I think is fantastic!” - LB

INTERACTIVE INTERVIEWS Situational Maps From conducting six interactive interviews with participants, contextual themes of relational, education and trust barriers towards selfmanagement practice emerged as initial findings from all participant engagements. Notably, almost all participants who used digital devices trusted their analogue counterparts more, but only if they trusted their knowledge and educational insight to manage their diabetes. Also notable from my sample was disparity towards clinical support roles, which subsequently places strain on non-clinical relationships. As such, these interviews explored relational barriers towards the lived experience of type 1 diabetes self-management practice. 13

â&#x20AC;&#x153;If I they up t But in a frien them

“LibreLink automatically uploads all my results and we have set it up so my mum can receive them in real time too... as a nurse she kept me and my dad right growing up, so the Freestyle Libre allows me to keep that connection even though I have my own life and family now.” - JH

CENTRAL

knew what or who my DSN was and y got a live feed and they could kick me the arse… that might be a good thing. I wouldn’t want it to be someone I was a relationship with or a close family nd as I don’t want my relationship with m to be medical.” - BS

DIRECT

INDIRECT

“You need someone there to actually motivate you to go. And I am okay because my Mum and Dad have forced me to do things… and for people who don’t really have supportive parents, ‘awh do what you want…” there is not going to be any motivation to push themselves” - IG

INTERACTIVE INTERVIEWS Relational Map Afterwards, from collating situational map data from all participants, I synthesised these activity findings into a collective relational map showing direct and indirect stakeholders within a diabetes health network through situational analysis. This relational map outcome illustrates how self-management practice goes beyond the self. Notably, trust-points were common among the stakeholders closest to the user. As such, the closer a stakeholder can be to the user proximally, the more opportunity for trusting relationships and experiential insight. Hence, these findings helped shift the focus of my inquiry beyond self-management devices to further stakeholder relationships going forward. 15

iPAG

Community Awareness & Education

Charit Sect

JDRF Scotland

Emergency Services

Health Service Provider

Pre-emptive Care Strategy

Lin

Family & Friends Family

Social Support Groups

Public Space Other Family Members Home

G Scotland

Other Acquaintances

Friends of friends

Partner Community Approaches

Blood Glucose Monitor

table tor

Parent or Guardian

Social Networking Continuous Glucose Monitor

Close Friend(s)

Colleagues

Diabetes Scotland

nk/Support Worker

Interface Role

Conventional Self-management Methods

User-friendly Interfaces & Interoperability

Control Algorithm

Dexcom: Share and Follow

Apps

My Diabetes My Way Suppliers LibreLink Accessibility & Reliable

Insulin Injections

Insulin Pump

OneTouch Reveal Diabetes Industry

Clinical First Port of Call

Diabetes Team

Other clinical staďŹ&#x20AC;

Diabetes Specialist Nurse (DSN)

Diabetes Clinic

Your GP/ Doctor More frequent consultations Diabetes Consultant

General Practice

Representatives

Non-clinical staďŹ&#x20AC;

General Practitioner (GP)

PARTICIPATORY WORKSHOP Validation and Co-analysis Following an icebreaker activity to introduce and prompt discussion around the workshop’s theme of self-management. I facilitated participants through the relational map interpreted from previous interview mapping. Participants validated the map relations and co-analysed it with further experiences that delved deeper into the relationships illustrated. Initial themes of relations, education and trust played a prominent role in many of these conversations as barriers between users and not only digital self-management devices but also other people illustrated within the relational map too. This highlighted the need to explore further stakeholder relationships beyond the user further throughout participant engagement. 17

“I tr tha “th I ca I ch wh low

rust my blood glucose monitor more an my Libre. Anytime I scan that I think hats not right!” Its actually an added job! an do too high or too low [...] And then heck it and think sometimes it is right… here other times its telling me that I am w, when I am sitting at 6.3!” - EM

“The only people who will understand are parents of diabetic children themselves because you have a child who has to eat exact amounts, and you think how hard that would be... it was more than a full time job! [We] have a very very close relationship, because we had to be close!” - JC

“They don’t stick! Watch this… this is what I have to do on my CGM. [Ohh have you got like a band or something?] Aye thats it! That is what you keep a drip on with! Because it falls off! It just comes off and I phoned Medtronic and said to the guy “Have you ever had one of these on?” - AL

Relational Map

Family & Friends Family

Community Awareness & Education

Social Suppo rt Groups

Public Space

Other Family Members

iPAG Scotla

Home Community Approaches

Partner

Friends of friends

Other Acquaintanc es

Charitable Sector Blood Glucose Monitor

Diabetes Scotland JDRF Scotland Link/Suppor t Worker

Parent or

Guardian Continuous Glucose Monitor

Close Friend

(s) Colleagues

Conventiona Self-manage l ment Methods

Social Networking

Interface Role Control Algorithm

User-friendl y Interfaces & Interoperab ility

Accessibility & Reliable

Emergency Services

Dexcom: Share and Follow

Apps Insulin Injections

My Diabet es My Way

Suppliers Insulin Pump

LibreLink

Clinical First Port of Call

Health Service Provider

OneTouch Reveal

Diabetes Industry

Diabetes Team Pre-emptive Care Strate gy Diabetes Clinic

Diabetes Specialist Nurse (DSN)

Other clinica l staﬀ Representat

ives

More freque nt consultation s

Your GP/ Doctor General Practice

Diabetes Consultant

Non-clinical staﬀ

General Practitioner (GP)

PARTICIPATORY WORKSHOP Provotype Generation Following in-depth discussions inspired by the relational map co-analysis, participants were invited to explore what if provocations that were derived from previous interview insights. These what if provocations were used to inspire new conversations and ideas in situ, such as diabetes as a “new normal” and positive notions of “our condition” rather individualistic perceptions, as what if scenarios together. Participants selected “what if others were better educated?” for the provotype generator. We created a provotype that saw those with lived experience of diabetes become ambassadors for the condition to educate others into the realities of selfmanagement and inspire positive perspectives for those living with type 1 diabetes. 19

“I wasn’t diabetes isn’t well for me. A going to perspect thats goi

‘Provotype’ Generator WHAT IF...

WHAT IF...

What if... Provocations

WHAT OTH IF... ER WER S E EDU BETTER CA AWAR TED AN D E?

W S HA O OM T IF T R M EO ... BE O S OT NE TT EL IV PU ER F-M AT SH ? AN E Y AG OU E

t well during the summer, nothing s related but he said that ‘mummy l’ and came in with a carton of juice Awh! God love you! [You can tell he is have such a different outlook and tive!] Yeah! Absolutely and for him ing to be ‘normal’.” - EM

“Actually it’s kind of… ‘our’ condition. Yeah its something that we manage together. […] Because thats what I had with my mum and now what I have got with my partner. [...] So its things like that where, it becomes both our responsibility. Its nice that its not just me that has to worry about it.” - AL

“A constant worry! And one of the saddest things about it was that people didn’t understand, and even see to listen to myself… I think that sounds as if you are really exaggerating - but I wasn’t... because what I quite likened it to was that she could quite literally, die… at any moment!” - JC

PARTICIPATORY WORKSHOP Alternative Now Principles Then we tested our provotype contextually against assembled user journey scenarios based on previous interviews. This ‘alternative now’ intervention activity sought to help participants to think and empathise from new viewpoints by considering all stakeholders in each scenario and how our provotype intervention could change the situation for those involved. Finally, participants were asked to reflect on the workshop activities holistically to consider principles for those interested in user needs for long term conditions, such as; government, health boards, digital health and care sector, self-management device manufacturers and user experience designers, through the principle pyramid tool to structure hierarchy. 21

ntio

terve ve Now’ In ‘Alternati

“Understanding that the person you are talking to is managing their condition. Daily, on their own! So Medtronic, for example… if I get a crack in my pump, which I usually do every 6 weeks because… [Every 6 weeks?!] Mine does! [I had heard…] No they are really really bad! - AL

“I felt as if I was judged all the time… I definitely did feel that with the consultant. Oh a huh! She would sit with the diary and I actually used to feel… I didn’t know why, but I would always be lower than her... do you understand? [...] And I was very fortunate because I had mine to a tee.” - JC

ons

“I have to say, the majority of my wider group of friends are not great when it comes to my diabetes at all - and actually I find them quite offensive! [Yeah!] [Ummhum!] There are a couple who understand, like my sister and best friend and things like that but my wider group… no!” - EM

Humanise the condition Emphasise to really understan d

Consider user’s experience

Streng rather th weaknthan ess

Bey num ond bers

I am still ‘me’ - I am a person

Every has request a reason

“I can’t” appreciate more positivity

‘new’ normal

Educate yourself and others

Principle Pyrami

SUMMATIVE FINDINGS To analyse the participatory workshop, I deployed thematic analysis for identifying patterns in workshop transcript data as codes; these codes were then mapped towards defining themes using the initial finding framework from earlier situational analysis of interactive interviews. Identified themes expanded on the relational, education and trust framework by further considering; Relational Roles and Experiential Insight, Trusting Agency and Empathetic Insight as well as Educational Opportunities and Asset-based Approaches. These cumulative findings enabled me to synthesise these themes further into selfmanagement principles for the digital health and care sector to design preferable products and services for long term condition users. 23

49 3

5 42

71 94

52 1

82 29

58 16

Relational Roles

19 Experiential Ignorance

RELATIONAL

30 37

65 66

48 EDUCATION

TRUST 77

53 Educational Opportunities

27 86

Asset-based Approaches

87 64

54 90

81 91

31 84

24 44

43 61

Empathetic Insight

35 83

Trusting Agency 80 74

23 70

22 72

95 96

PRINCIPLE 1 A principle from this participatory design practice was that a userâ&#x20AC;&#x2122;s self-management goes beyond the singular â&#x20AC;&#x2DC;selfâ&#x20AC;&#x2122; and their devices as long term conditions affect other stakeholders directly and indirectly. This was examined through the situational and relational mapping from the interactive interviews as well as co-validated during the participatory workshop. As such, through exploring the relationships from different perspectives, participants situational outlook of their condition changed to a more collective stance as well as empowering their role and agency as a user to influence change and transformation towards the design of their digital self-management devices and other stakeholder relationships involved in self-management practice. 25

Self-ma as

anagement relations go beyond singular â&#x20AC;&#x2DC;userâ&#x20AC;&#x2122; and their devices

PRINCIPLE 2 Another principle was that the design of selfmanagement devices needs to consider the holistic user experience to enable trusting relationships. This was prominent throughout engagements with participants questioning if manufacturers had considered the lived experience of using these devices as participants cited functional problems were common in everyday contexts, and some could even have fatal consequences, leading to participants preferring their older/traditional devices, such as blood glucose meters and insulin injections, over newer digital technology. As such, digital self-management devices should be designed around holistic user experience to build functionally trustworthy relationships towards connected systems. 27

Se consid

elf-management trust needs to der the holistic user experience

PRINCIPLE 3 The last principle was that education and experiential insight was a key opportunity to mitigate barriers to self-management practice. This was highlighted through the participatory workshop provotyping, where participants realised that through early intervention of better education and relational empathy, situations could be transformed towards positive outcomes and avoid ‘pain-points’ in user journeys. This can also be a way of ensuring effective and sustainable knowledge exchange within self-management practice going forward. As such, this signals that ‘user-to-user’ learning and insight to “educate yourself and others” has been an under-utilised resource and networking opportunity for those who self-manage a long term condition to develop their practice. 29

Self-management education and experiential insight is key

CONCLUSION The participatory design practice undertaken during this research did help discover the barriers of type 1 diabetes self-management beyond the self. On reflection, I believe the engagement conducted with participants was rich with narrative detail and the participatory design tools deployed helped discover and drive front-end innovation. This is evident in the principles delivered as they respond to participants suggesting that relationships beyond the enduser have not been fully considered within the design of current self-management devices and how these systems could be transformed towards preferable futures. Moving on, I would like the opportunity to disseminate my research in the future and welcome the chance to show summative outputs of this research as an engagement toolkit to gain feedback from various industry audiences and explore practical applications for the research framework and design tools developed in this study, beyond the MRes. 31

For more information about the project, please feel free to read the full MRes thesis/portfolio linked below or contact the researcher: Ross McIntosh r.mcintosh1@student.gsa.ac.uk Master of Research (MRes) in Design, Health & Care The Innovation School, The Glasgow School of Art

Read MRes Thesis/Portfolio:

http://radar.gsa.ac.uk/7309/ or scan QR code >

This research has been conducted during a full-time Masters of Research (MRes) at The Glasgow School of Artâ&#x20AC;&#x2122;s Innovation School and was awarded a fee-waiver studentship by the Digital Health & Care Institute (DHI). 32

Master of Research: Design, Health & Care