Salty Lives is an experiment into how design-led approaches might begin to unravel, interrogate, and re-envision healthcare by exploring it through the lens of living with the chronic illness cystic fibrosis. By investigating this specific context, its barriers, and opportunities, it aspires to also interrogate the organisational structures, services, and systems around healthcare more generally.
The project uses design research to critically examine emerging patterns of living in this area, to address and explore the questions they throw up, and to uncover and articulate alternative trajectories. It is therefore not only an inquiry into how we might live, but also into how we might design. It explores how design practices can be applied to reimagine the cultures, institutions and systems that shape our world.
As a result of this design research journey, I proposed Compass - an app for wayfinding. It allows people with cystic fibrosis to get in touch with others who live with similar health challenges using medical data. A phone call provides a direct, personal, but non-committal way of contact. Compass aims to bridge the gap between medical and measurable data, patient activism, and research - and the more human layer of well-being, sensemaking and wayfinding through storytelling and personal contact. It does not intend to provide answers, but show possible trajectories, challenge what might be seen as inevitable or impossible, and open up discussions. This applies to living with CF, as well as to broader issues of sharing medical data, of how health knowledge is defined and controlled, and what it means for quality of life.
The first part of this project is looking at how we might live with chronic illness. At cystic fibrosis as specific context, its barriers, and opportunities. But also at the organisational structures, services, and systems that make up healthcare more generally. The second part is looking at how we might design, at how design research can critically engage with emerging patterns of living, ask new questions, and uncover alternative trajectories. And at how design practices can then be applied to reimagine the institutions and systems that shape our world. The project is named Salty Lives because people with cystic fibrosis have more salt in their sweat and their skin tastes extremely salty. Salty is also a synonym for lively, vigorous, spirited, colourful, and sparkling, and these are very appropriate words to describe some of the people living with cystic fibrosis I have come across during this project.
I decided to focus on CF for two reasons: First, I also live with CF. This made this project a little complex at times, but overall it helped me a lot. It was easier to gain access, I am already part of some of the communities I spoke to, and it helped me to gain deeper understanding in a short time. But more importantly, people with CF are basically extreme users of the healthcare system, and this provides an insightful perspective on healthcare.
With this in mind, I looked at healthcare as a network of actors and relationships connecting them. My approach to exploring this network consisted of activities that zoom in and out of this network, its actors, and their relationships, and explore emerging trends.
I learnt that digital technology is becoming increasingly important, and this goes hand in hand with social innovation and new attitudes, needs, and behaviours. Yet I also ended up with many more questions, especially in the area of consent, privacy, and sharing data. For example, I started having more questions around the usefulness of more and more data gathering and whether we really are producing new kinds of knowledge and using it differently this way. And also around the role of the patient in all of this, as it is becoming more and more blurred and contested from all sides of the healthcare system, including patients themselves.
Yet I also ended up with many more questions, especially in the area of consent, privacy, and sharing data. For example, I started having more questions around the usefulness of more and more data gathering and whether we really are producing new kinds of knowledge and using it differently this way. And also around the role of the patient in all of this, as it is becoming more and more blurred and contested from all sides of the healthcare system, including patients themselves.
I started by asking What If questions to articulate where things are going, how they could change to benefit healthcare users more, and why this matters.
My response to this is Compass, an app for wayfinding. This app will let people with CF get in touch with others who live with similar health challenges, and explore other people's journeys with CF and beyond.
And it works like this: First, you share some of your health data with Compass. You can also add a question or topic. And based on this, compass will point you to others who had a similar experience, challenge, or question, or just live their lives in a body similar to yours. It will offer you the possibility to start a phone call with this person.
This concept is about bridging the gap between medical and measurable data, patient activism, and research on one hand - and on the other hand the more human layer of well-being, sensemaking, and wayfinding through personal interaction. It does not provide answers, but its benefits lie in showing possible trajectories, helping to challenge what might be seen as inevitable or impossible, and opening up discussions. This applies to living with CF, as well as to broader issues of sharing medical data, of how health knowledge is defined and controlled, and what it means for quality of life. Using Compass might in fact throw up more questions like what data to reveal, what it means, what is a life well lived, what is important? Compass users would complement simply collecting, sharing, and using medical and measurable data, with a way to make sense of it, to understand its meaning, and to use it to find their own way through life with CF and beyond.
This is obviously a suggestion based on the emerging future of healthcare, but I tried to test the basic concept. I e-mailed someone with CF who blogs, and has a similar decision to make as me, and asked her to have a phone call. It lasted 11 minutes and 32 seconds, and here are some of her comments after. It was quite positive, and it was interesting to discuss questions doctors and nurses do not have answers for, but that are also hard to bring up with friends and family, without having to explain a lot.
With more time it would be interesting to find out how the idea behind Compass could apply to wider healthcare contexts where relationships are changing, and where data is playing an increasing role, to add a layer of meaning, sensemaking, and wayfinding.
I think what you have done is wonderful, profound and important. There are some incredible insights. I think, in the end, we are all searching for meaning as well as trying to do what we can to stay well and live full lives. Your project recognises that and the fact that all these things are intrinsically and intimately linked.
I can see there is a real need for Compass app and, for what it's worth, I would use it myself. I really like your "What ifs". The "Appointment Journey" is fantastic and actually brought a tear to my eye as did "Testing and Reflections". I have found that reading something that really captures and nails down a thought I have had but struggled to complete or articulate can bring a tear of joy. It is a kind of magic.