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EMPATHIC CONVERSATIONS JANUARY 2017 London: Here at STBY, our team of design researchers recently worked on a project to better understand how those with health conditions that require frequent monitoring seek support and advice, whether through friends, family, healthcare professionals or online forums. We used effective approaches in our in-depth interviews to enable empathic conversations with our participants, generating rich insights for design. What are key enablers of such empathic conversations,


001 EMPATHIC CONVERSATIONS


We conducted in-depth ethnographic research in Greater London, speaking with four individuals with

CONTINUAL CONTACT Continual contact with research participants was one

Type 1 diabetes involved in local diabetes support

technique that allowed us as design researchers to

groups, Diabetes UK, research councils, and Meet Up

have empathic conversations, gaining deep insight

groups. By carrying out in-depth interviews at

into the lives of our participants and exploring a

participants’ homes, we were able to dive deeply into

person’s life in a way that uncovers intimate

these individuals’ daily lives and the sources of

behavioural and motivational drivers. Engaging with

support most important to them, whether it be certain

participants at multiple points during a project was a

friends, books or their computer.

way to have this continual contact, which began with and included the recruitment process.

EMPATHIC CONVERSATIONS A key element of our approach to design research at

As we wanted to learn from individuals’ experiences

STBY is to have ‘empathic conversations’ with our

who are already involved in some sense on a

participants, interviews in which researchers are equal

community-level with diabetes, we began recruitment

parts attentive and sensitive, aiming to understand a

by reaching out to organisations in London including

participant’s experience and share their feelings.

Diabetes UK, JDRF and local groups such as Havering

Empathic conversations allow us to reach a deep level

Family Diabetes Group. We began a snowball

of behavioural insight, uncovering participants’

recruitment that put us in touch with individuals

practices and motivations. This is key to generating

tapped-in to various support networks and channels,

rich insights as well as connecting a client

interested in sharing their experiences with us.

organisation with the people they design for, providing real-world context. De Lille et al (2012) have

We had close contact with our participants during

described the crucial role of empathy in relation to

recruitment and prior to the in-depth interviews,

the design of Product Service Systems (PSS).

providing a project info sheet, speaking on the phone

“Empathic understanding goes beyond knowledge: when empathising you do not judge, you ‘relate’ to (the user) and understand the situations and why certain experiences are meaningful to these people, a relationship that involves an emotional connection.” - De Lille et al (2012) Making our conversations empathic is a key goal in all

beforehand and answering questions by phone and

our design research projects, one which we employ

email. We aimed to ensure participants understood

various methods in order to do so. This research we

our research topic of interest, were comfortable with

recently conducted into patient support networks is

participation and understood what it entailed. This

exemplary of our approach to design research,

transparent communication of our research and

through fieldwork and the rich insights empathic

‘continual contact’ before the in-depth interviews built

conversations can generate. Continual contact with

a certain level of trust already, necessary for open,

participants, using engaging interview materials, and

empathic conversations during the interviews

visually capturing and communicating our research

themselves.

were three key aspects of the approach we took to enable and promote empathic conversations.

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We interviewed five individuals for this project at their

playful materials and prompts to be used during the

homes: Alex and his mother Lara, Jeff, Jenna, and

in-depth interviews. Especially when exploring

Lou. Alex, 14, and his mother Lara belong to a family

potentially more sensitive topics with participants

support group for children with Type 1 diabetes; Lara

such as their personal health, having something out

plays a crucial role in supporting Alex to monitor and

on the table to talk around can help ‘break the ice’

manage it. Jeff, 69, is heavily involved in the Havering

and build that vital rapport and trust between design

Family Diabetes Group, having been diagnosed with

researcher(s) and participant(s).

Type 1 diabetes at 21. Jenna, diagnosed with Type 1 diabetes at 13, is also heavily involved with various research councils and local groups in London, including the All-Party Parliamentary Group for

For this research, we designed a large worksheet that combined an in-depth profile and ‘network map’. The in-depth profile captured important ‘background’

Diabetes and the Strategic Clinical Leadership Group.

information from a participant such as their home, job

Lou, a part-time Credit Controller, volunteers at her

and hobbies. The ‘network map’ looked at the

local hospital and is affiliated with Diabetes UK,

support network(s) surrounding each participant,

having “more of a mix of Type 2 and Type 1” diabetes

using physical icons to represent important sources of

after recovering from pancreatic cancer.

support in one’s life (e.g. partner, HCPs, Facebook).

ENGAGING INTERVIEW MATERIALS Another important way in which we enabled empathic

how close one considers these varying sources (e.g.

conversations was through the design of engaging,

sources.

We used this activity of ‘network mapping’ to look at local or external) and the relationship between these

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1. Jeff shows his ‘museum’ of collected monitoring devices. 2. Lou’s refrigerator. 3. Jeff shows his ‘museum’ of collected monitoring. 4. Lou’s refrigerator is a shrine to her travels.

005 EMPATHIC CONVERSATIONS


This is perhaps the more important, and empathic

VISUALLY CAPTURE & COMMUNICATE

question; what does it mean to this individual how

The photographs we took during these empathic

their sources of support relate to one another? What

conversations and re-enactments are a powerful way

can we as designers learn from this?

for those not present first-hand in fieldwork to also engage and empathise with individuals’ experiences.

We also presented each participant with ‘scenario

Photographs have a visual language that breaks down

cards’ that gave prompts to participants to think

barriers of discipline and jargon, allowing one to take

about what they might do, think or feel given a

another’s perspective or ‘step into another’s shoes’.

certain situation. For example, cards read ‘if I have a pressing question about my condition…’ or ‘if I’m

The act of taking photos during fieldwork itself can

feeling great and want to have a good time…’; who

also promote empathy between researcher(s) and

might one call? What might one do? We asked

participant, as Maartje van Gestel (2015) reflects and

participants to ‘re-enact’ for us their responses to

as we found through this research. She notes the

these prompts, which we are able to capture with

importance of communication and trust to

photography and film. Participant re-enactment allows

photograph participants in a familiar, personal way.

for a deeper level of understanding and empathy, as

We also aimed to build trust and empathy with

more details of what someone might actually do in a

participants in a way that not only put them at ease

given scenario emerge, as opposed to the participant

with us (and our camera’s) presence, but allowed them

‘having to remember’ these valuable details.

to understand the value of capturing these personal, sometimes mundane details of their lives.

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Photographs from this project include off-the-cuff snapshots but also go beyond this, such as these photographs over Lou’s shoulder as she takes her daily dose of cod liver oil. Photographs like these can make a viewer feel as though they are there with us as well, looking on first-hand with the participant.

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At Lou’s home for example, at first she questioned why we’d be interested in taking photos of some of her belongings on the shelf in the living room, or the magnets on her refrigerator. These images help paint a richer picture of a woman who isn’t only someone with Type 1 diabetes, but also for example collects paperweights as well as magnets which speak to her extensive world travels.

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EMERGING RICH INSIGHTS After in-depth interviews, we carried out an analysis that resulted in key emerging insights, one of which is illustrated following. With such a small sample size of four, the value in these insights is certainly in their depth versus their breadth. The insights highlight the value of empathic conversations to gain deep understanding of individuals’ experiences, adding colour and detail to insights that at surface level may not appear particularly groundbreaking or revelatory. The intricacies and diversity of individuals’ experiences that support these insights are what is most valuable, enabling design teams to be informed and inspired by the very detail and intimacy of individuals’ stories. RESILIENCE & ASSERTION REQUIRED Individuals find it necessary to be both resilient and assertive in order to effectively navigate through the various sources of information to make sense of it all, from local GPs to specialist clinics to online forums. For someone diagnosed with Type 1 or Type 2 diabetes, there’s a wealth of information to take in

“It’s not going to be handed to you… I had to just do my own thing.” - Lou from various sources and to understand in terms of how to monitor and manage the condition on a daily basis. It can feel overwhelming and confusing, and as Lou says, “it’s not going to be handed to you.” Lou has been diagnosed with Type 2 diabetes in her 60s, and after recovering from pancreatic cancer, said it is “more of a mix of Type 2 and Type 1.” Lou shared with us her story of finding sources of information and support that work for her:

because then you know what you should and shouldn’t eat. But there’s not a lot of support and you don’t know where to go. The clinic is so busy that you have to wait every 3 months to go back. You can call them whenever, and I did once - I was having a colonoscopy and I needed to to know if I should still do my injections. They actually didn’t even know the answer so it wasn’t a lot of support. I had to just do my own thing, which was fine.” There’s a sense of empowerment that comes along with feeling like you’ve navigated through it, that you know a lot about diabetes and how to manage your own daily life with it. Jenna echoed this sentiment: “If you’re thick, you’re not going to get it. I’ve been on courses with people who aren’t very bright, and I can see their health suffering, because actually they don’t get it. It’s awful, and it’s heartbreaking. Again, that’s why I do the research. I do try and share info with other people, but I’m empowered because I’ve had it [Type 1 diabetes] for a long time and I know all about it.” In addition to being proactive about finding the information he needs, Jeff is also assertive in contacting local government officials by mail and and campaigning for causes near to him, such as providing more affordable glucose sensors through the NHS to those with diabetes. He echoes Lou’s approach to just “finding your own way”. Regardless of the size of one’s physical and digital support networks, resilience and assertion are necessary attributes to remain undeterred to get the information and care you want, need and deserve. However, not everyone is inherently as assertive as Jeff or as resilient as Lou for example. Important design opportunities lie in designing services and products that either do not require one to be so

“I find it hard to get support. I researched a lot in the beginning, as I didn’t know where to go to get support. How do you know if you’re doing it right with the injections? What are you supposed to be doing? I went on a [diet] course called DAFNE provided by the Diabetic Clinic. It’s really good

resilient and assertive in order to get the care and support they require, and/or assist those who may need it in being more resilient and assertive to navigate the current system(s) of information and support.

009 EMPATHIC CONVERSATIONS


Lou describes “doing her own thing” as speaking with friends, looking on the Diabetes UK website, and attending local events. As she says, “you have to discover your own support, if you want that support…I know all about it now, I feel like I have enough support”.

010 EMPATHIC CONVERSATIONS


“There are lots of little gimmicks out there, making life a lot easier, but no one knows about them. I always go on to the Diabetes UK website, and there’s another website, diabetes.co.uk, which has a lot of information. There are loads of different societies like JDRF (Juvenile Diabetes Research Foundation), I go onto their site as well. They do show you all these different things that are available.” - Jeff

011 EMPATHIC CONVERSATIONS


JENNA CHANGING POLICY 1 - I’m busy full-time doing diabetes-related work. I work on health research with doctors, professors and parliament. I’m a trustee of various charities and work with the All-Party Parliamentary Group for Diabetes. I’m interested in research on diabetes-related technology and education.

SNACKS AT HAND 2 - I love Jelly Babies! I always have them in my bag with me in case my blood sugar drops. 1

LOVE OF MUSIC 3 - I trained as a professional musician, piano and clarinet. I go to concerts every week with my husband and still enjoy playing the piano.

INSULIN PUMP 4 - I check my blood sugar probably 100 times a day. I have the Animas Vibe insulin pump. I still have to often check by pricking my finger to calibrate the system. 2

3

Jenna is an extremely active member of her community, involved in several local diabetesrelated groups, meet ups, and charities. She is passionate about changing policy and education around diabetes, making care and information more easily available to more people. She works with doctors and professors on various research projects, and is on the Strategic Clinical Leadership Group. Jenna was diagnosed with Type 1 diabetes at 13, and at first struggled with it as she ignored it and wasn’t careful. She know nows a lot about Type 1 diabetes through her work and is now quite confident in her knowledge and management of it. Jenna lives with her husband in a home they’ve shared for 26 years, and tighter they are also active in the community with the local church; they also sing and go to see music performances at least twice a week. Together her and her husband go on walks and belong to different walking groups in the area. 4

EMPATHIC RESULTS

design team in a way that enables empathic

As it was crucial within fieldwork to enable empathic

conversations. The images aren’t just about how he

conversations, it is also important for project results

manages his diabetes, but tell the story of a man who

and deliverables to do the same. Empathic

loves playing chess, has a taste for fine whisky, and

conversations across and within the wider design

honours his first wife’s memory every day. Each

team are important, especially for those who were not

individual has their own desires, motivations,

present during fieldwork. In-depth participant profiles

preferences and quirks that can inform future design

are an example of this, to help others ‘meet the

in this space. These should shine through to illustrate

participants’ and get to know more about their world.

the depth of insights and understanding gained

Presenting insights and opportunities as we do above

through empathic conversations.

with personal stories is crucial to create that empathy. Participant profiles are another result that raises

Through this research into patient support networks,

empathy with the creative teams we work with, and

we’ve seen the effectiveness of continual contact,

can go beyond an individual’s relation to the research

engaging interview materials and visually capturing

topic; for example, one learns from Jenna’s profile

and communicating our research in enabling

that she trained as a professional musician, and her

empathic conversations. These empathic

love of music shines through in her daily life.

conversations allowed us to get beyond the surface with participants, supporting in-depth insights that

This visual collage of Jeff and his world is another

can engage and inspire a design team with the real,

example of how we presented research to a wider

lived experiences of these individuals.

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FURTHER READING Daam, Heather L., van Gestel, Maartje and Raijmakers, B. (2015) Metaphors as a Common Language for Empathic Conversations in Collaborative Networks. Design Academy Eindhoven. De Lille, C., Roscam Abbing, E., and Kleinsmann, M. (2012). A designerly approach to enable organisations to deliver product-service systems. In International Design Management Research Conference, 8-9 August. Boston MA, USA. Gestel, M.V. (2015). The design researcher as photographer. In Empathy Through a Lens (pp.15-40). Eindhoven, Design Academy. Kouprie, M. & Sleeswijk Visser, F. (2009). A framework for empathy in design: stepping into and out of the user’s life. Journal of Engineering Design. Vol. 20, No. 5, pp. 437-448. McDonagh, D. (2006). Empathic research approaches to support the designer: a supra-qualitative research for designing model. Design Issues. Raijmakers, B. and Van Dijk, G., et al. (2009) “Designing Empathic Conversations for Inclusive Design Facilitation”, Paper presented at Include09, Royal College of Art, 5-8 April. London, UK. Young, Robert. (2014). The role of empathy as a core value for service co-design practitioners engaged in social innovation. In Moving Stories (pp.11-18). Eindhoven, Design Academy.

013 EMPATHIC CONVERSATIONS


MEET & GREET

1

JEFF THE MUSEUM 1 - I keep a museum of all the old monitoring devices and pumps I’ve used over the years. I also accept donations to the collection from friends!

LOCAL GROUP 2 - I’m retired but work for the Havering Family Diabetes Group; we’ve received some awards and recognition. I book speakers, venues for fundraising, and organise monthly hospital visits.

2

Jeff (69) lives at home with his partner and two dogs. He was diagnosed with Type 1 diabetes at 21; he’s lived with it for a long time and confidently manages it with the help of his partner. He first struggled for years, but using an insulin pump changed his life. His wife passed away 6 years ago and has a profound impact on Jeff ’s life, driving him to stay involved with the community. He is retired but heavily involved in the community, spending most days working for the Havering Family Diabetes Group as the Vice Chair & Fundraiser. He organises events and meetings and goes to hospitals to educate others about diabetes and the latest technologies. He keeps his own ‘museum’ of old devices and gadgets he’s used to monitor and manage his diabetes over the years, which he brings with him to events and enjoys sharing.

GLUCOSE SENSOR

3

SINGLE MALT WHISKEY 4 - I have a taste for single malt whiskey, and now that I’m on my own and can afford it I enjoy that! 4

MEET OUR PARTICIPANTS

3 - I was diagnosed with Type 1 diabetes at 21 and knew a little bit about it. The first 19 years were very rough, but after finally getting an insulin pump I could manage it much more easily. I just started using the Freestyle Libre sensor! I know the latest things to make life easier, but not everyone does. I know people and I do research on Diabetes UK and other websites.


JENNA CHANGING POLICY 1 - I’m busy full-time doing diabetes-related work. I work on health research with doctors, professors and parliament. I’m a trustee of various charities and work with the All-Party Parliamentary Group for Diabetes. I’m interested in research on diabetes-related technology and education.

SNACKS AT HAND 2 - I love Jelly Babies! I always have them in my bag with me in case my blood sugar drops. 1

LOVE OF MUSIC 3 - I trained as a professional musician, piano and clarinet. I go to concerts every week with my husband and still enjoy playing the piano.

INSULIN PUMP 4 - I check my blood sugar probably 100 times a day. I have the Animas Vibe insulin pump. I still have to often check by pricking my finger to calibrate the system. 2

3

Jenna is an extremely active member of her community, involved in several local diabetesrelated groups, meet ups, and charities. She is passionate about changing policy and education around diabetes, making care and information more easily available to more people. She works with doctors and professors on various research projects, and is on the Strategic Clinical Leadership Group. Jenna was diagnosed with Type 1 diabetes at 13, and at first struggled with it as she ignored it and wasn’t careful. She know nows a lot about Type 1 diabetes through her work and is now quite confident in her knowledge and management of it. Jenna lives with her husband in a home they’ve shared for 26 years, and tighter they are also active in the community with the local church; they also sing and go to see music performances at least twice a week. Together her and her husband go on walks and belong to different walking groups in the area. 4


LOU TRAVEL SOUVENIRS 1 - My husband is a bit of a hippie traveler, so he isn’t always here. I enjoy traveling too, that’s my big hobby. To everywhere, really. I find it hard to just sit still!

HEALTH REGIMEN 2 - I take statins, vitamin D and enzymes for my high cholesterol. Every day I test my blood sugar 3 times and inject insulin 5 times. I’m on a long-acting and short-acting insulin, one before meals, the other is twice a day. The diabetic clinic advises me on this.

CREDIT CONTROLLER 3 - I’ve worked as a Credit Controller for 25 years, chasing people for bills they haven’t paid. Now I work from home, doing 2 hours a day. Then I volunteer visiting patients at the hospital. Some people don’t have visitors and like to see a friendly face.

1

Lou lives with her husband and her son (for the moment) at her home in Sussex for the last 24 years. She’s been diagnosed with Type 2 diabetes and after recovering from pancreatic cancer, says “it’s more of a mix of Type 2 and Type 1”. As she gets older, she’s gone through her share of health problems, including arthritis, high cholesterol, under-active thyroid and skin cancer. However, Lou now feels relatively fit and keeps busy all the time, working part-time as a Credit Controller, volunteering at her local hospital, and is involved with her local diabetes support group, affiliated with Diabetes UK. She enjoys traveling and going to the cinema and theatre, as well as playing some Candy Crush on her computer.

2

3

MEET OUR PARTICIPANTS


1

LARA & ALEX GLUCO TABS 1 - Alex keeps a stash of these in his school bag in case his blood sugar gets low, it’s easy to take one.

SENSORS & INSULIN 2 - We keep boxes with what Alex brings with him every day. This has the glucose sensors and some insulin.

4

MONITORING APP 3 - Alex uses a glucose sensor which takes a reading every 5 minutes and levels his blood sugar through a pump. These sensors last about a week, and it’ll tell you on your phone when you need to replace it. A transmitter sends the data to Alex’s phone through this diasend app, so he can check his levels through it.

2

MUSICAL FAMILY 4 - Even though we (almost) all enjoy music, we don’t often play together. Alex also really enjoys acting and singing with a coach, and is in a group at school for this. He focuses on art, drama and music at school.

Lara and Alex live at home in South London with Lara’s husband and daughter (Alex’s father and sister). Alex is 14 years old, his sister 10. Lara has worked in IT support for 22 years, now working part-time so she can more easily take care of her two children. The family has a pet fish together, and everyone (except for Lara) is quite musical - having 2 guitars, an electronic drum set, and a piano in the dining room. Alex has Type 1 diabetes, and Lara plays a central role in making sure Alex has what he needs at home and at school to monitor and manage it. Often this includes conversations with Alex’s teachers, to try to educate them and increase understanding of Alex’s needs throughout the day.

3

MEET OUR PARTICIPANTS


ABOUT STBY At STBY, our creative research projects connect organisations with the lives and experiences of their customers. This helps our clients innovative their service offering, making it more valuable for both their customers and their business. Our projects generate rich, visually illustrated and engaging materials, that bring real people into the heart of service innovation processes. STBY 221-222 Shoreditch High Street London E1 6PJ +44 (0)2073928996 www.stby.eu

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Empathic Conversations  

How we use empathic conversations at STBY in design research to generate rich, in-depth insights for design.

Empathic Conversations  

How we use empathic conversations at STBY in design research to generate rich, in-depth insights for design.

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