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

Abstract

Context 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. Objective To synthesize the qualitative literature on the experience of patients as partners in research. Design 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). Data collection 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. Analysis 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. Results 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. Conclusions 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.

Implementing an Activity Tracker to Increase Motivation for Physical Activity in Patients With Diabetes in Primary Care: Strengths, Weaknesses, Opportunities and Threats (SWOT) Analysis

“…Patient engagement in health research is an emerging phenomenon and contributes, among others, to identify research questions and outcomes important to patients and clinicians, data collection processes, interpretation of results, and dissemination [ 25 , 26 ]. Indeed, patient engagement allows patients to become partners with academic researchers to create a meaningful and active collaboration in governance, priority setting, conducting research, and knowledge transfer [ 27 , 28 ]. Patient engagement helps transfer research findings into practice and can ultimately improve patients’ outcomes [ 29 ].…”

A qualitative evidence synthesis exploring people after stroke, family members, carers and healthcare professionals’ experiences of early supported discharge (ESD) after stroke

“…The CASP checklist is endorsed by the Cochrane Qualitative and Implementation Methods Group [ 33 ] and is commonly used for quality appraisal in health-related qualitative evidence syntheses [ 34 ]. Although studies were not excluded based on CASP scores, critically appraising studies served to evaluate and allow discussion on the credibility of findings within the research team which influenced the process of analysis [ 35 ]. A customised template, Table 2 , was used to extract the descriptive characteristics of each study which included the number and characteristics of participants, location of study, methodology, data collection and key research aims.…”

Researchers’ experiences with patient engagement in health research: a scoping review and thematic synthesis

“…A charting form was used to assist team discussion and approbation as a support to the full-text screening and for the descriptive analysis. For each article, the information extracted in a charting form, inspired by the charting forms developed by Joanna Briggs Institute [ 19 ], Lauzon-Schnittka et al [ 12 ] and Arnstein et al [ 20 ], were: authors, year of publication, country of origin, title, aim, type of evidence source, participant number and demographics, whether a specific population was targeted, definitions of PPs and PE, whether PPs were engaged in the study, whether PPs were coauthors or otherwise acknowledged, interview guide subjects, and main findings. If the data items were not specified, the field was left blank.…”

“…The literature suggests that efforts should be invested in understanding how partnerships with patients can produce positive impacts in health research and how to facilitate the engagement of patient-partners (PP) in health research [ 9 , 11 ]. Although we know a lot about the experience of PPs in health research [ 12 ], our understanding of the experience of researchers collaborating with PPs in health research is limited.…”