Patients’ Participation in Health Research: A Classification of Cooperation Schemes

BACKGROUND: The number of academic papers referring to patient engagement or to related terms has been rising sharply for at least 20 years; several review articles have recently been published enumerating a wide variety of situations of patient involvement in research and partnership with health professionals. OBJECTIVE: As no standardized keywords and no shared classifications exist to facilitate comparative studies of situations where patients and their organizations are recognized as coresearchers, this paper purports to create a typology to analyze those situations. METHODS: Based on 8 already existing meta-reviews or related studies, this work is achieved using a template based on Claude Bernard’s conceptualization about experimental medicine. RESULTS: This typology allows differentiating between modes of involvement and levels of patients reflexivity mobilized in evidence-based medicine (EBM) trials. Screening through a first set of various meta-reviews using this typology shows that a high level of reflexivity is seldom observed and seen only when a patient organization (PO) is involved in the process. This suggests that such an organization can play several roles essential to high reflexivity trials; the PO is capable not only of grouping singular approaches but also of synchronizing and correlating them. However, as nowadays health researchers and POs give more attention to syndromes or troubles for which EBM clinical trials are not relevant due to lack of biomedical indicators (eg, fibromyalgia, chronic fatigue syndrome, or psychiatric disorders), a supplementary mediation category is added to take into account action-research, community-based participatory research, and grounded theories. CONCLUSIONS: With this new category, this typology should be able to classify most of the cooperation schemes and thus be a useful tool for the next systematic reviews.