HEALING FABULATIONS

A healing methodology for digital health codesign and prototyping

We aim to use the ‘Design Research’ section of this website to introduce some of the academic outputs that result from applying and developing design research methods across health, care and wellbeing contexts. We hope these introductions offer insight to design students, practitioners, and anyone interested in using design approaches to tackle challenges in these contexts. We will also link to the full publications for anyone interested in learning more.

INTRODUCTION

Marissa Cummings and Gemma Teal, two of DHI’s design researchers, have published an article in CoDesign, the International Journal of CoCreation in Design and the Arts, titled Healing fabulations: a dialogic methodology for digital codesign in health research. The article describes a new methodology for working with participants when prototyping digital health systems. Marissa developed the methodology through her DHI-funded Master of Research project at GSA. Here, we will summarise the new methodology and how you can apply some of these ideas in your work. 

Why do we need this new methodology?

Health experiences can be emotionally challenging, even traumatising, and it is difficult to express the depth of these experiences. These stories can be extremely complex as they can take place over long periods of time. Commonly used digital design research methods tend to flatten lived experiences by combining stories from many participants or over-simplifying them (e.g. by turning them into personas). This loses much of the stories’ emotional resonance and disregards “outlier” experiences which may be where participants experience the most stress. This can also be retraumatising when findings are shared with participants, who may feel their most meaningful experiences have been omitted. 

In this project, we used some principles from narrative medicine alongside codesign to better capture these stories while working with participants in a supportive, healing way. Narrative medicine is a field of medicine which uses storytelling, writing and listening as part of the treatment process. The project’s goal was to understand how to design tools that could be used by people with long-term health conditions for recording and sharing their health stories.

How does the methodology work?

In this approach, we worked in-depth with only five participants on a one-to-one basis. We asked each participant to attend three sessions, each lasting at least one hour. In the first session, we asked participants to share their stories using a set of simple prompts. For example: What was it like when you were diagnosed? What changed afterwards? What do you imagine will happen in the future?

After this session, we created a small set of sketches and lo-fi prototypes for each individual participant capturing the essence of a tool that could communicate their ‘health story’ (you can learn more about this concept and it’s generation here). In the second session, we reviewed these and did a codesign activity with the participant, which generated their ideas for a storytelling tool. These ideas were used to create a more detailed, interactive prototype which we reviewed with them in the final session. 

Why was this beneficial?

Using individual prototypes for each participant meant we could capture their stories and ideas in more detail. The individual approach meant we could customise each prototype to the participant in terms of the imagery and functionality, making each one a true representation of the person’s story and avoiding any representations they might find traumatic. It also resulted in a much wider range of ideas than a traditional prototyping process, which typically focuses on developing only one or two variations.

One potential drawback to this approach is that it can be emotionally intense for both participants and researchers, so greater care must be taken to ensure that those involved are properly supported. Journaling, time for individual reflection, and follow-up care can all be used here.

Participants expressed great pleasure at seeing the final designs. The feedback showed the methodology successfully supported participants and created prototypes of tools that participants valued.

Summary

The story of a person’s health experience can be traumatising and complex. In traditional digital codesign, it can be hard to translate these into prototypes without losing the richness. One way to deal with this problem is to work in greater depth with a smaller number of participants, designing a prototype for each participant. This process can be very beneficial and even healing for participants, however care should be taken to ensure that both participants and researchers are appropriately supported.

For those interested in learning more, the full article detailing the methodology is available online from CoDesign. You can read more about the health experiences gathered in this journal article or access Marissa’s thesis online or in the GSA library.

Authors

Marissa Cummings

Gemma Teal

FURTHER INFORMATION

For further information please contact:

Marissa Cummings | m.cummings@gsa.ac.uk