ArticleResearch involvement and engagement2026
Compensating patient partners on health research teams: a qualitative descriptive study of barriers, facilitators, and implications for equity, diversity, and inclusion in Canadian patient-oriented research.
Article in Research involvement and engagement, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Authors and funding
13 authors.
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Abstract
backgroundResearch teams increasingly rely on patient engagement-where patients are engaged as partners in knowledge production-to improve the quality and relevance of health research. An ongoing challenge is how best to compensate patient partners for their time and expertise, given diverse personal, financial, and institutional contexts. This study identifies common barriers and facilitators to patient partner compensation; examines how compensation practices actively shape who can participate in patient-oriented research, enabling or constraining equity, diversity, and inclusion within health research teams; and explores strategies to mitigate barriers to equitable compensation and boost diverse and inclusive patient engagement in health research.
methodsUsing a qualitative descriptive design, and with active involvement from patient partners on our research team, we recruited geographically and socially diverse participants from across the spectrum of patient-oriented research in Canada, including patient partners, research staff, administrative and finance employees, and funding organization staff. Semi-structured interviews (n = 25) and focus groups (10 in number, n = 24), conducted between 2023 and 2025, elicited respondents' impressions of the interactions between patient partnership, compensation practices, and equity, diversity, and inclusion. We applied inductive thematic analysis to identify shared values and common experiences, and explore solutions to compensation practices that challenge equitable patient engagement.
resultsThematic analysis of interviews and focus groups generated seven themes: Clear expectations and processes, Bureaucratic inertia, Reproduction of privilege, Institutional mistrust, Tax and benefit implications, Funding cycles, and Relational dynamics.
conclusionCompensation is an integral component of effective patient-oriented research and has significant implications for research engagement among structurally marginalized communities. We propose recommendations for advancing equitable and inclusive compensation practices within Canadian patient-oriented research.
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