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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. 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? 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. 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). 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. 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. Patients and next of kin are encouraged to participate in planning, conducting and evaluating research studies. This involvement can generate more diverse, usable and valid research results. However, what constitutes ‘good enough’ involvement has not been thoroughly investigated. We aim to describe how patients and next of kin can be involved in research by answering three main objectives: (1) How are patient partners and next of kin involved in research? (2) How does involvement change the research? (3) What makes patient involvement in research work well? We carried out a scoping review, a type of research that maps out what has been studied so far, to summarise how researchers report involving patient partners in their studies and how this involvement affects the quality of the studies. We looked at 124 reviews. Most of the reviews were published in the United Kingdom, Canada, and the United States of America. Patients and next of kin take part in different research, mostly by giving advice or working closely with researchers. However, most reviews did not define what impact or related terms mean. Most also pointed out that researchers do not report clearly how patient involvement makes a difference. Sixteen enablers were found to foster the effective involvement of patient partners. In short, good teamwork based on trust, clear communication, and enough funding, training, and support is key to making patient involvement work well. We suggest that future research should create better guidelines to support effective involvement and find ways to measure its impact.
Tscherning et al. (Tue,) studied this question.