How are patient partners involved in health service research? A scoping review of reviews

Background Including patients and next of kin as partners in research can help promote the development and dissemination of results that are inclusive, usable and relevant to health service settings. However, the impact of such involvement remains largely anecdotal, necessitating research to identify methods for achieving meaningful involvement.

Objectives The aim was to examine how patient partners are involved in research across health service settings by addressing three objectives: (1) How are patient partners involved in the research process? (2) What is the impact of involving patient partners in research? (3) What defines effective patient partner involvement in research?

Methods We conducted a scoping review by searching five databases (Embase, Scopus, MEDLINE, CINAHL, PsycINFO) and grey literature. Published reviews within health service settings examining patient partner involvement were included. Protocol papers and reviews on patient involvement in treatment and care were excluded. The review adhered to Arksey and O’Malley’s methodological framework and followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Checklist.

Results A total of 124 reviews were included. Most reviews have been published after 2014, primarily from the United Kingdom, Canada and the United States of America. Patient partners were involved with consultation and collaboration approaches in different stages of the research process, including identifying and prioritising (n = 49), designing (n = 57), managing (n = 40), undertaking (n = 53) and disseminating (n = 51) and less in commissioning (n = 11), implementing (n = 6) and evaluating impact (n = 17). Impact reporting varied, with few reviews (n = 11) explicitly defining ‘impact’ and its related concepts. Sixteen key enablers for effective patient partner involvement were identified. The most reported enablers included partnerships built on trust and inclusive communication (n = 56), training and support for patient partners (n = 53), flexibility (n = 48) and adequate resources (n = 45).

Conclusion A significant gap exists in defining and measuring patient partner involvement. Adequate resources and training are essential for furthering trust-based, inclusive partnerships between researchers and patient partners. Future research should prioritise improving impact assessment, addressing power imbalances and refining best practices to enhance effective involvement.

Patient and public contribution Two authors contributed with lived experience as patients and next of kin. Four patient partners were consulted about the results, one of whom coauthored this scoping review.