Patients' Associations as Co-Creators of Knowledge: Insights From a Community-Based Participatory Research Study...

Patient and public involvement and engagement (PPIE) in research is crucial for producing knowledge that is meaningful to the participating community. Sharing PPIE principles into practical tools and strategies enriches the development of participatory research methodologies. This article describes the co-creation process of ProSafe, a Community-Based Participatory Research (CBPR) project conducted in Italy, which explores community perspectives on the reorganization of territorial healthcare toward proximity care. The aims are: (1) to describe the co-creation process, (2) to examine its successes and challenges, and (3) to propose strategies and practical recommendations for fostering partnerships and engagement throughout all research stages.

The project is based on an explanatory sequential mixed-method design. A Patient Safety Council (PSC) acted as a co-researcher. The five-level spectrum of public engagement developed by the International Association for Public Participation (IAP2) guided the analysis of the decision-making power balance between academics and the PSC at each phase. Emphasis was given to the process of survey co-creation. A SWOT (Strengths, Weaknesses, Opportunities, Threats) analysis was performed to identify strategies and practical recommendations to strengthen engagement.

The SWOT analysis results informed the development of OPERA-PACT (Opening a Participatory and Equitable Research Agreement based on Partnership, Awareness, Collaboration, and Trust), a framework co-created with the PSC to formalize shared principles, values, and attitudes that sustain collaborative partnerships. The framework also includes a commitment to continuous monitoring, verification, and feedback to reinforce partnership over time.

All instruments, strategies, and methodological insights proposed in the article may serve as practical support tools to strengthen the voice of communities in research and to contribute to the production of valid and translational results. Implementing the OPERA-PACT framework may further help align team members with PPIE principles and lay the foundation for effective and sustainable collaboration.