Vancouver, B.C. – (July 7, 2026) As patients and members of the public take on greater leadership roles in health research, a new study is helping define what meaningful leadership looks like in practice.
Led by Arthritis Research Canada trainee Ellen Wang, alongside scientist Dr. Linda Li, the study examined how patient- and public-led research is defined and carried out across the health research process. By reviewing 62 published studies from 1996 to 2024, the research provides a clearer understanding of how leadership is shared between researchers and people with lived experience.
While patient engagement has become increasingly common in health research, the study found that leadership extends far beyond participation or consultation. Instead, patients and members of the public can play central roles in shaping research priorities, guiding decision-making, conducting research activities, interpreting findings, and sharing results. Researchers, in turn, contribute technical expertise, mentorship, and institutional support to help bring these projects to life.
“Our review shows that patient leadership is more than having a seat at the table,” said Wang. “When people with lived and living experience are recognized as experts and supported to lead research in ways that reflect their strengths, we can strengthen the relevance and impact of research on the communities it is intended to serve.”
The review also found that leadership is rooted in a redistribution of power, with lived experience recognized as an important form of expertise. Half of the studies included in the review were led by Indigenous communities, while 84 per cent included patients and public as authors.
Supporting patient leadership means moving beyond participation to create conditions for recognition of lived experience as expertise, meaningful support and shared power. By providing conceptual clarity for understanding patient- and public-led research, the study offers practical guidance for building more equitable research partnerships.
Read the full study here.
Click the image below to enlarge and view the study infographic.
