Co-constructing experiential knowledge in health: The contribution of people living with Parkinson to the co-design approach

Abstract

Background: The use of collaborative approaches in the design of digital health technologies could help researchers to better understand the patient perspective. Starting from a 2019 Canadian case study focused on co-design and Parkinson’s disease, this paper discusses the potential of using narrative interviews to capture the patient experience. Aim: The objectives of this study are to examine the process of co-construction of ‘experiential knowledge’ through the interaction during a narrative interview and stress the significance of this method in relation to a co-design approach. Methods: A qualitative analysis of transcripts from 19 narrative interviews conducted in 2019 with people living with PD and their caregivers was performed. Results: Materialized in embedded, embodied, and emergent knowledge, findings reveal the potential of narrative interviews to provide insight to how experiential knowledge of people living with PD is constituted. Discussion: In addition to generate a learning environment, the analysis indicates that narrative interviews help to make visible experiential knowledge through the interaction processes between patients, caregivers, and researchers. Conclusion: This suggests that narrative interviews permit a more patient-centered design of digital health technologies, as they collect the psychological, social, and medical factors that influence the experience of these individuals.