The experience of patient partners in research: a qualitative systematic review and thematic synthesis.

Patient engagement in research consists in involving patients as partners across the research cycle. This practice has quickly become an international standard, with funding bodies actively encouraging it. As the increased incentive to engage patients can lead to tokenistic partnerships, it is important to consider the experiences of patient-partners. To synthesize the qualitative literature on the experience of patients as partners in research. A systematic review of the literature with thematic synthesis was realized, guided by the framework developed by Thomas and Harden (Bmc Med Res Methodol 8: 45, 2008). A search strategy was developed to encompass keywords relating to patient-partners in research, their experience, and the qualitative nature of the target studies. 10 databases were searched using the EBSCO-host engine, along with the Scopus engine to include EMBASE. The search results were screened for the following inclusion criteria: articles written in English; articles reporting on the experience of patient-partners in research; qualitative studies or mixed-methods studies with a distinct qualitative section. Included articles were charted for general information. The CASP qualitative checklist was used for critical appraisal. The "results" section of each article was coded line by line. Codes were aggregated inductively to form descriptive themes and analytical themes, in order to synthesize the ideas found in the selection of articles. The initial search yielded 10,222 results. After the removal of duplicates, 5534 titles and abstracts were screened, 88 full-text reports were evaluated, and 41 studies were included. Articles reporting on these studies were published between 2005 and 2020. Seven themes emerged from the analysis: "motivations to engage in research", "activities in patient engagement", "structure", "competence", "team dynamics", "impacts on broader life", and "illness". Articles reported varying degrees of perceived impact on research and satisfaction concerning the level of engagement. The importance of power differentials and team dynamics were widely stated. Findings provide an in-depth view of the experiences of patient-partners in research. Most articles reported a generally positive experience, but challenges and pitfalls of patient engagement were identified. This will serve research teams by highlighting good practices and possible improvements. Patient engagement is the practice of involving patients as partners in research teams. Through these partnerships, patients become co-researchers, which promotes patient-centered research. In recent years, this practice has quickly gained popularity and is now encouraged by scientific funding bodies. This financial incentive to engage patients helps to promote the practice but can lead to tokenistic partnerships. Therefore, it is important to understand how patient-partners experience engagement in research.This systematic review aimed to describe the experience of patient-partners in research by synthesizing existing studies on the subject. 41 relevant studies were found, which described seven general themes in patient-partners’ experience. These themes were “motivations to engage in research”, “activities in patient engagement”, “structure”, “competence”, “team dynamics”, “impacts on broader life”, and “illness”. Within these themes, many positive experiences were described, such as the stimulating intellectual challenges of research, or the pride of helping others. Negative experiences were also identified, such as when patient-partners felt inadequately prepared for research activities, or when hierarchies of powers were formed. These findings will allow future research teams to improve patient engagement and will hopefully lead to better experiences for patient-partners.

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