Patient co-design of digital health storytelling tools for multimorbidity: A phenomenological study

Abstract

Background: Interest in both narrative medicine and electronic health records has increased over the past 30 years. However, electronic health records are mainly written by and for clinicians, and the patient narrative and voice are not incorporated. Recent studies within the United Kingdom have indicated that there is a need to incorporate patient stories into health records, to improve quality and continuity of care. This is particularly important when treating people with multiple long-term health conditions (multimorbidity), whose health stories can be particularly complex. Objective: To understand the goals and requirements of people with multimorbidity for digital health storytelling tools. Methods: The methodology uses narrative within a phenomenological approach to inform a process of co-design. Results: The findings indicate that people living with multimorbidity would use health storytelling tools to understand and reflect on their journeys, convey their experiences to others and advocate for themselves against scepticism. Conclusion: Outputs from the project give insight into the lived experience of multimorbidity, as well as understanding the goals of people living with multimorbidity for using health storytelling tools as part of treatment and self-management. Future research could explore other areas such as collaborative health storytelling or the technical implementation of tools. Patient or Public Contribution: Five adults with multiple long-term conditions participated in the project, and research was carried out in three stages. First, semistructured interviews were used to understand each participant's health story. Second, each participant worked with the researcher to co-design a visual representation of their story. Finally, digital prototypes based on their health story were reviewed with each of the participants.