Public involvement in health research systems: a governance framework

Area of Science:

• Health Services Research
• Public Health Policy
• Research Governance

Background:

• Growing interest in public involvement in health research necessitates understanding its organizational and policy implications.
• Policy-oriented scholarship is identifying network arrangements shaping public involvement activities.
• Conceptualizing public involvement in health research through a governance lens is increasingly important.

Purpose of the Study:

• To analyze governance functions related to public involvement in health research.
• To adapt established health research system frameworks and scoping review methods for this analysis.
• To synthesize evidence from scholarly papers and policy reports on public involvement governance.

Main Methods:

• Utilized an established health research system framework.
• Adapted scoping review methodologies to identify relevant literature.
• Employed a qualitative interpretive approach for synthesizing findings.

Main Results:

• Identified 45 relevant scholarly papers and policy reports.
• Found consensus on the need for governance across stewardship, financing, resource creation, and research production.
• Highlighted divergent visions for public involvement, particularly concerning the stewardship function.

Conclusions:

• A governance perspective is valuable for coordinating and institutionalizing public involvement in health research.
• This perspective reveals challenges inherent in public involvement as a political intervention.
• Diverse publics should be involved in and govern health research systems.