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

Abstract

Research 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. Using 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. Thematic 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. Compensation 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. These days, health research teams often include patient partners. Patient partners are people with lived experience of a health condition or the healthcare system, who use that experience to help with the planning, design, conduct, and sharing of health research. Their input and perspectives help to make research fit better with the real-life concerns of people who live with health conditions. One challenge is how best to reward patient partners for their work. Sometimes, there are rules and regulations that make payment complicated. We spoke with patient partners, researchers, and people who work for research and funding organizations from across Canada. We asked them about what works well and what does not when it comes to paying patient partners. We also asked about how the ways that we pay people for helping with research affect participation by people from diverse communities. We identified seven themes to describe what we found: Clear expectations and processes, Bureaucratic inertia, Reproduction of privilege, Institutional mistrust, Tax and benefit implications, Funding cycles, and Relational dynamics. Based on these themes, we give suggestions for changes that could make payment for research partnership easier and more inclusive.