Abstract: FR-PO340
Evolution of Patient Partner Roles in a Canadian, Patient-Oriented Kidney Research Network: A Qualitative Study
Session Information
- CKD: Clinical, Outcomes, Trials - II
November 08, 2019 | Location: Exhibit Hall, Walter E. Washington Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: CKD (Non-Dialysis)
- 2102 CKD (Non-Dialysis): Clinical, Outcomes, and Trials
Authors
- Elliott, Meghan J., University of Calgary, Calgary, Alberta, Canada
- Schick-Makaroff, Kara, University of Alberta, Edmonton, Alberta, Canada
- Love, Shannan, University of Calgary, Calgary, Alberta, Canada
- Manns, Braden J., Foothills Medical Center, Calgary, Alberta, Canada
- Fernandez, Nicolas, Université de Montréal, Montreal, Quebec, Canada
Background
Engagement of patients as partners in health research is a mandate of the patient-oriented kidney research network, Can-SOLVE CKD. However, how patients assume and integrate their unique roles within the Network has not been examined. The aim of this study was to explore how researchers and patient partners characterize the roles and responsibilities of patients in the context of their individual projects and broader Network governance.
Methods
This study used a qualitative descriptive methodology informed by Role Theory. We purposively sampled across all research teams within Can-SOLVE CKD and conducted interviews and focus groups with researchers (i.e. project leads, co-investigators, and research coordinators) and patient partners (i.e. persons living with chronic kidney disease and their informal supports) from 17 of 18 Network projects. We conducted 4 focus groups (2 patient and 2 researcher groups; N=26) and 28 interviews (N=12 patients, N=16 researchers). We analyzed transcript data using an inductive, thematic analysis approach. Coding was done in duplicate (MJE, NF), and themes were developed in relation to the objectives.
Results
With increasing familiarity and comfort engaging together in research partnership, participants described an evolution of perspectives on patient partner roles within the Network and patient-oriented research more generally. We identified 3 themes to support this: 1) Receptivity to novel engagement opportunities – patient partners assume roles that align skills and interests with project needs; 2) Acknowledgement of role fluidity – roles and responsibilities evolve naturally with increasing experience and confidence; 3) Commitment to moving knowledge forward – patient partners increasingly engage in knowledge translation and moving research into practice.
Conclusion
The perceived roles of patient partners within the Can-SOLVE CKD Network have evolved since the Network’s inception, as has participants’ receptivity toward patient-oriented research. Future work will further characterize unique opportunities for patients to engage in kidney health research and the perceived impact of this engagement.