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, and how do we best communicate results to design teams?
We conducted in-depth ethnographic research in this space in Greater London, speaking with four individuals with Type 1 diabetes involved in local diabetes support groups, Diabetes UK, research councils, and Meet Up groups. By carrying out in-depth interviews at participants’ homes, we were able to dive deeply into these individuals’ daily lives and the sources of support most important to them, whether it be certain friends, books or their computer.
A key element of our approach to design research at STBY is to have ‘empathic conversations’ with our participants, interviews in which researchers are equal parts attentive and sensitive, aiming to understand a participant’s experience and share their feelings. Empathic conversations allow us to reach a deep level of behavioural insight, uncovering participants’ practices and motivations. This is key to generating rich insights as well as connecting a client organisation with the people they design for, providing real-world context. De Lille et al (2012) describe the role of empathy in relation to the design of Product Service Systems (PSS), writing:
“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.”
Making our conversations empathic is a key goal in all our design research projects, one which we employ various methods in order to do so. This research we recently conducted into patient support networks is exemplary of our approach to design research, through fieldwork and the rich insights empathic conversations can generate. Continual contact with participants, using engaging interview materials, and visually capturing and communicating our research were three key aspects of the approach we took to enable and promote empathic conversations.
Continual contact with research participants was one technique that allowed us as design researchers to have empathic conversations, gaining deep insight into the lives of our participants and exploring a person’s life in a way that uncovers intimate behavioural and motivational drivers. Engaging with participants at multiple points during a project was a way to have this continual contact, which began with and included the recruitment process.
As we wanted to learn from individuals’ experiences who are already involved in some sense on a community-level with diabetes, we began recruitment by reaching out to organisations in London including Diabetes UK, JDRF and local groups such as Havering Family Diabetes Group. We began a snowball recruitment that put us in touch with individuals tapped-in to various support networks and channels, interested in sharing their experiences with us.
We had close contact with our participants during recruitment and prior to the in-depth interviews, providing a project info sheet, speaking on the phone beforehand and answering questions by phone and email. We aimed to ensure participants understood our research topic of interest, were comfortable with participation and understood what it entailed. This transparent communication of our research and ‘continual contact’ before the in-depth interviews built a certain level of trust already, necessary for open, empathic conversations during the interviews themselves.
We interviewed five individuals for this project at their homes: Alex and his mother Lara, Jeff, Jenna, and Lou. Alex, 14, and his mother Lara belong to a family support group for children with Type 1 diabetes; Lara plays a crucial role in supporting Alex to monitor and manage it. Jeff, 69, is heavily involved in the Havering Family Diabetes Group, having been diagnosed with 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 Diabetes and the Strategic Clinical Leadership Group. Lou, a part-time Credit Controller, volunteers at her local hospital and is affiliated with Diabetes UK, having “more of a mix of Type 2 and Type 1” diabetes after recovering from pancreatic cancer.
Engaging Interview Materials
Another important way in which we enabled empathic conversations was through the design of engaging, playful materials and prompts to be used during the in-depth interviews. Especially when exploring potentially more sensitive topics with participants such as their personal health, having something out on the table to talk around can help ‘break the ice’ and build that vital rapport and trust between design researcher(s) and participant(s).
For this research, we designed a large worksheet that combined an in-depth profile and ‘network map’. The in-depth profile captured important ‘background’ information from a participant such as their home, job and hobbies. The ‘network map’ looked at the support network(s) surrounding each participant, using physical icons to represent important sources of support in one’s life (e.g. partner, HCPs, Facebook). We used this activity of ‘network mapping’ to look at how close one considers these varying sources (e.g. local or external) and the relationship between these sources, which is perhaps the more important, and empathic question; what does it mean to this individual how their sources of support relate to one another? What can we as designers learn from this?
We also presented each participant with ‘scenario cards’ that gave prompts to participants to think about what they might do, think or feel given a certain situation. For example, cards read ‘if I have a pressing question about my condition…’ or ‘if I’m feeling great and want to have a good time…’; who might one call? What might one do? We asked participants to ‘re-enact’ for us their responses to these prompts, which we are able to capture with photography and film. Participant re-enactment allows for a deeper level of understanding and empathy, as more details of what someone might actually do in a given scenario emerge, as opposed to the participant ‘having to remember’ these valuable details.
Visually Capture & Communicate
The photographs we took during these empathic conversations and re-enactments are a powerful way for those not present first-hand in fieldwork to also engage and empathise with individuals’ experiences. Photography and film have a visual language that breaks down barriers of discipline and jargon, allowing us to take another’s perspective, ‘stepping into another’s shoes’. 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.
The act of taking photos during fieldwork itself can also promote empathy between researcher(s) and participant, as Maartje van Gestel (2015) reflects on and as we found through this research as well. She notes the importance of communication and trust in order to photograph participants in a familiar, personal way, often in the private environment of their home. We also aimed to build trust and empathy with participants in a way that not only put them at ease with us (and our camera’s) presence, but allowed them to understand the value of capturing these personal, sometimes mundane details of their lives.
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.
Emerging Rich Insights
After these in-depth interviews, we carried out an analysis that resulted in key emerging insights, one of which is illustrated following. With such a relatively small sample size of four, the value in these insights is certainly in their depth as opposed to their breadth. The insights themselves highlight the value of having empathic conversations in order to gain a 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 these 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 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:
“I find it hard to get support. I researched it a lot in the beginning, because 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 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.” — Lou
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”.
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, saying “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”:
“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
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 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.
As it was crucial within fieldwork to enable empathic conversations, it is also important for project results and deliverables to do the same. Empathic conversations across and within the wider design team are important, especially for those who perhaps were not present first-hand during fieldwork. In-depth participant profiles are one example of this, a way to help others ‘meet the participants’ and get to know more about them and their world. Presenting insights and opportunities as we do above, with personal stories in words and images, is crucial to create that empathy. In addition, participant profiles are another result that raises empathy with the creative teams we work with. Our participant profiles usually go beyond just the individual’s relation to the research topic; for example, one learns from Jenna’s profile that she trained as a professional musician, and her love of music shines through in her daily life.
This visual collage of Jeff and his world is another example of how we present research to a wider design team in a way that enables empathic conversations. The images aren’t just about how he manages and monitors his diabetes, but also tell the story of a man who loves playing chess, has a taste for fine whisky, and honours his first wife’s memory every day. Each individual has their own desires, motivations, preferences and quirks that can inform future design in this space. These should shine through project results and deliverables to illustrate the depth of insights and understanding gained through empathic conversations.
Through this research into patient support networks, we’ve seen the effectiveness of continual contact, engaging interview materials and visually capturing and communicating our research in enabling empathic conversations. These empathic conversations allowed us to get beyond the surface with participants, supporting in-depth insights that can engage and inspire a design team with the real, lived experiences of these individuals.
A full PDF of this article is available on our website here.
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