See me, Hear me, Know me: Digital design for health storytelling
Interest in both narrative medicine and electronic health records have increased over the past 30 years. However, current electronic health records are unlikely to be patient-focused or to use narrative modes of care. Recent studies within the UK have indicated that there is a need to incorporate patient stories into health records, particularly for those with long-term conditions.
The aim of this project was to understand how digital tools can support people with multiple long-term conditions in making sense of and conveying their health stories. Outcomes from the project include recommendations for the design of such tools, alongside digital prototypes which embody the participants’ health stories. The project also used a narrative-led methodology to explore how a phenomenological approach can contribute to digital design for health and care.
Five adults with multiple long-term conditions participated in the project, and research was carried out individually in three stages. Firstly, semi-structured interviews were used to understand each participant’s health story. Secondly, participants worked with the researcher to co-design a visual representation of their story. Finally, digital prototypes based on their health story were reviewed with the participants.
The findings from the project are a set of recommendations which can be used to inform future digital design for health storytelling. Future research could explore other areas such as collaborative health storytelling or technical implementation of tools.