Patient- and Public-Led Research – How Is It Defined and Practiced: A Scoping Review
Ellen Wang, Linda Truong, Nejat Hassan, Erica Quershi, Khole Merry, Trinity Lowthian, Marisa Lin, Nelly D. Oelke, Heather Gainforth, Janet Curran, Linda C. LiBackground
Patient- and public-led research signals more than a redistribution of decision-making authority, positioning patients and public as key contributors of scholarly inquiry throughout the research process. Despite the growing awareness of patient- and public-led research endeavors, it is unclear how they are conducted. This scoping review aimed to synthesize how patient- and public-led research is defined and practiced in health research.
Methods
Our scoping review was guided by the Arksey and O’Malley’s framework (2005) and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR). A comprehensive search of health research databases and grey literature sources was conducted. Included studies were published in English and described how patients and public held final decision-making authority (
Results
Our search identified 4,723 records, of which 68 articles describing 62 studies met the inclusion criteria. Patient- and public-led research was described using terms including consumer-led, user-led, Indigenous-led; with only 14 (23%) studies offering an explicit definition. Our review identified three contexts in which patient- and public-led research occurred including: how research was carried out (operations), how decisions were made (governance), and how intellectual/experiential contributions from patients and public shaped research trajectories (accountability).
Conclusion
By shifting the focus from involvement to leadership, our findings provide a foundation for more intentional design, meaningful support, and robust evaluation of patient- and public-led health research.