Patient- and Public-Led Research - How Is It Defined and Practiced: A Scoping Review.

Area of Science:

• Health Services Research
• Patient and Public Involvement in Research
• Research Methodology

Background:

• Patient- and public-led research positions individuals as key contributors throughout the scholarly inquiry process.
• Growing awareness of patient- and public-led research contrasts with a lack of clarity on its practical implementation.
• This scoping review addresses the need to synthesize definitions and practices of patient- and public-led research in health.

Purpose of the Study:

• To synthesize how patient- and public-led research is defined in health research.
• To understand the practical application and contexts of patient- and public-led research.
• To identify key elements of patient and public leadership in health research.

Main Methods:

• A scoping review guided by Arksey and O'Malley's framework and reported using PRISMA-ScR guidelines.
• Comprehensive search of health research databases and grey literature, including studies where patients/public held final decision-making authority (IAP2 continuum).
• Analysis using Contributor Role Taxonomy (CRediT) and iterative discussions to identify shared contexts and emergent roles.

Main Results:

• Identified 62 studies meeting inclusion criteria from 4,723 records.
• Found diverse terminology (e.g., consumer-led, user-led, Indigenous-led) with limited explicit definitions (23%).
• Three contexts of patient- and public-led research emerged: operations, governance, and accountability.

Conclusions:

• Findings shift focus from patient/public involvement to leadership in research.
• Provides a foundation for designing, supporting, and evaluating patient- and public-led health research.
• Emphasizes the importance of intentional design and robust evaluation for effective patient and public leadership.