Patient partner perspectives on compensation: Insights from the Canadian Patient Partner Survey

• DOI: 10.1111/hex.13971
• Publication Date: 2024-01-16T07:13:48Z
• Authors: Roma Dhamanaskar; Laura Tripp; Meredith Vanstone; Carolyn Canfield; Mary Anne Levasseur; Julia Abelson
• Keywords: Salary; Ambivalence

Abstract Introduction There is a growing role for patients, family members and caregivers as consultants, collaborators partners in health system settings Canada. However, compensation this not systematized. When offered, it varies both type (e.g., one‐time honorarium, salary) amount. Further, broad‐based views of patient on are still unknown. We aimed to describe the types frequency have been offered their attitudes towards compensation. Methods This study uses data from Canadian Patient Partner Study (CPPS) survey. The survey gathered experiences perspectives those who self‐identified working across system. Three questions were about compensation, asking what participants had if they ever refused whether felt adequately compensated. latter two included open‐text comments addition menu‐based scaled response options. Basic frequencies performed all analyzed through inductive qualitative content analysis. Results A total 603 individuals participated CPPS Most respondents never or rarely salary (81%), honorarium (64%), gift cards (80%) material gifts (93%) while half conference registration expenses at least sometimes. 129 (26%) 499 reported refusing Of 511 respondents, compensated always often, only sometimes, never. Open‐text revealed positive, ambivalent negative Attitudes framed by perceptions role, sentiments giving back system, feelings acknowledgement, practical considerations, values fairness equity accountability relationships. Conclusions Our findings confirm that standardized Half routinely feel inadequately diverse constitutes adequate inclusive personal considerations such preference volunteering, broader concerns promoting partnership. Organizations should attempt ensure practices clear, transparent attentive partners' unique contexts. Contribution Two research team fully engaged phases project conception knowledge translation. They co‐authors manuscript. was co‐designed pilot tested with partners.