Community-based research in therapeutic patient education: practices and contributions. A literature review

Introduction: Community-based research (CBR) in health involves both researchers and people concerned by the results of the research. It aims to empower populations, using their exposure to the phenomenon being studied as a starting point. The use of CBR in the field of therapeutic patient education (TPE) is of interest, as the two share such characteristics as the desire to foster self-reliance and participation and a culture of interdisciplinarity. Aim: To characterize CBR in the therapeutic patient education field. Methods: A literature search on PUBMED using the keywords "community-based (participatory) research", "patient education", "self-care" and "self-management" retrieved 121 articles. The analysis looked at the type of research, the characteristics of both the populations involved and the co-researchers, the collaborative actions (analysed using a grid from the literature), and the difficulties in implementing these actions. Results: Thirty-one studies were included. Ten consisted of methodological studies, which tended to show the added value of collaborating with users in implementing TPE programmes compared to standard methods. The remaining 21 studies described the co-design and/or co-execution of new educational programmes. We identified 5 collaborative actions that involved a preparatory phase of the research, and 17 collaborative actions that involved the prioritization, conduct, and analysis of the research and dissemination of the results. Preventive measures are needed for potential methodological, organizational, ethical, and emotional difficulties. Discussion: The 22 identified actions need to be confirmed by other studies. The analysis grid could ultimately become a tool for guiding researchers for their researches within the CBR framework.