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.

Co-Designing an Integrated Care Network with People Living with Parkinson’s Disease: A Heterogeneous Social Network of People, Resources and Technologies

“…For this article, we will be sharing the results from the Canadian study specifically. While the first two phases of the approach helped prepare the groundwork for the collective effort to capture patients’ and CP’ stories to identify care trajectories [ 22 , 23 ], it is in this third phase that respondents participate in design workshops to help develop an improved model of integrated care. At this stage of the research project, each country developed a “journey map” and a table identifying main touchpoints (an important point of contact with a person or service at the time of the event), key resources, and technologies to support integrated care.…”

Co-design with affect stories and applied ethics for health technologies

“…Narrative interviews are a classic tool in participatory approaches, particularly those who referred to Experience-Based Co-design (EBCD) (Bate and Robert, 2007;Donetto et al, 2015;Goodrich, 2018;Dimopoulos-Bick et al, 2019;Gaborit et al, 2021;Sendra et al, 2022). The objective is to draw on the stakeholders' experience to create space for dialogue and reflection.…”

“…We believe that the role of the researcher is to facilitate the different discussion loops that are to be orchestrated between the different stakeholders, to model the main arguments of each and to bring them collectively into discussion. This is where the added value of co-design lies: succeeding in collectively writing the ethics that the collective will decide to mobilize within the framework of the development of technological innovation (Provencher et al, 2022;Sendra et al, 2022). It is a question of moving away from a techno-determinist vision according to which the impact of a health device and its uses derive directly from the technologies developed, to recognize that these are in reality the fruit of a complex construction between the different stakeholders that is highly dependent on the context (Lehoux and Williams-Jones, 2007;Greenhalgh et al, 2017).…”

Coping Styles in Patients with Parkinson’s Disease: Consideration in the Co-Designing of Integrated Care Concepts

“…Co-design approaches applied in research may enable the development of healthcare delivery services and healthcare technology directly and in close collaboration with future users [ 25 , 26 ]. In co-design, the user’s perspective and experience are critical to the development process [ 26 ], which is why the concepts of collaboration and engagement are central to any co-design approach [ 27 , 28 ]. Co-design approaches link doing, talking, thinking, feeling, and the exchange of experience and knowledge in a complex process [ 27 ].…”