Abstract: FR-PO268
Perceived Significance of Engagement in CKD Research Priority Setting Among Stakeholders: A Qualitative Study
Session Information
- CKD: Clinical, Outcomes, Trials - II
October 26, 2018 | Location: Exhibit Hall, San Diego Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: CKD (Non-Dialysis)
- 1902 CKD (Non-Dialysis): Clinical, Outcomes, and Trials
Authors
- Elliott, Meghan J., University of Calgary, Calgary, Alberta, Canada
- Goodarzi, Zahra S., University of Calgary, Calgary, Alberta, Canada
- Sale, Joanna, St. Michael''s Hospital, Toronto, Ontario, Canada
- Wilhelm, Linda A., Canadian Arthritis Patient Alliance, Midland, Kings County, New Brunswick, Canada
- Hemmelgarn, Brenda, University of Calgary, Calgary, Alberta, Canada
- Straus, Sharon, Li Ka Shing Knowledge Institute, Toronto, Ontario, Canada
Background
Patients and other stakeholders are increasingly engaging as partners in research, although how they perceive such experiences, particularly over the long term, is not well understood. We sought to characterize how participants from a chronic kidney disease (CKD) research priority-setting project conducted two years previously perceived the significance of their involvement.
Methods
This was a qualitative study involving participants across Canada from a prior CKD research priority-setting project. We purposively sampled across stakeholder roles (i.e. patients with non-dialysis CKD, caregivers, healthcare professionals, and policymakers) and engagement types (i.e. involvement on the project’s steering committee and/or final prioritization stage). We conducted individual, in-depth Interviews, which we analyzed using an inductive, thematic analysis approach.
Results
We conducted 23 interviews across all stakeholder roles and engagement types, and characterized three themes. Participants identified research engagement as an opportunity to facilitate integration of distinct CKD stakeholder communities (i.e. patients/caregivers and healthcare professionals/researchers). All participants appreciated the experiences that stakeholders, and particularly patients, brought to research, which furthered their understanding of the CKD lived experience and the value of patient-oriented research. Stakeholders suggested that their involvement in the project helped re-focus their commitment CKD research and care, which encompassed a subsequent interest in research engagement and patient-centered care approaches.
Conclusion
When reflecting on their of experience engaging in CKD research prioritization, stakeholders viewed the significance of their involvement in relation to the integration of different CKD communities, an appreciation of the CKD experience, and a re-focusing of their commitment to research and CKD care. Findings highlight considerations for future health research that engages stakeholders, and in particular those living with CKD or other chronic illnesses, as research partners.