Patients' Associations as Co-Creators of Knowledge: Tools and Insights into Stakeholders’ Engagement Process. The Experience of the ProSafe Project for Advancing Treatment Safety in Proximity Medicine

Abstract Background. Active involvement of stakeholders in research is crucial to validate findings and facilitate their practical application for enhancing the health of the participating community. Despite a growing body of evidence on the implementation of participatory research (PR) in various contexts, evidence on practical tools and strategies for translating PR principles into practice is limited. The main aim of the study is to provide a detailed description of the co-creation process of a Community-Based Participatory Research (CBPR) project, named ProSafe, emphasizing community engagement actions and proposing practical tools and strategies for fostering collaboration. The ProSafe project involves academic researchers, Presidents and members of four Patient Associations (Patient Safety Council, PSC), and a pharmaceutical company which supported the project and facilitated the partenership. The study involves the co-creation of a comprehensive survey exploring and comparing community and healthcare professional perspectives on therapeutic safety challenges arising from the territorial reorganization of the proximity network foreseen by Italian Resilience and Recovery Plan. Results: The structured and problem-oriented methodology of ProSafe identifies several practical tools and strategies for survey and project co-creation, including a SWOT analysis to systematically assess strengths, weaknesses, opportunities, and threats, and develop improvement strategies from the co-researchers’ perspective. A framework named OPERA-PACT (Opening a Participatory and Equitable Research Agreement based on Partnership, Awareness, Collaboration, and Trust) was co-created with the PSC to provide a structured way for sharing a formal agreement and commitment toward a set of principles, values, and attitudes that characterize a collaborative partnership. Within the framework, a commitment to continuous monitoring, verification, and feedback is valuable, as it plays a key role in promoting virtuous cycles of improvement and fostering partnership and involvement over the long-term. Conclusions: All instruments, strategies, and methodological insights proposed in the paper may serve as useful and practical support to ensure communities may have increasingly strong voices in research, contributing to producing valid and translational results. The process of partnership identity built with the implementation of OPERA-PACT may help synchronize team members to the right atmosphere and create the basis for future efficient collaboration.