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Plain English summary Checklists (such as the GRIPP2) have been proposed as a way to improve how research papers report patient and public involvement in research projects. We were recently asked to complete a GRIPP2 as part of a peer review process, and it felt divisive. AB—a service user researcher—was just as much a part of the research team as was BS—a critical health psychologist. However, the role of BS in the research did not have to be justified or reported in the same way that was being asked of AB. A further concern about being required to use the checklist was that it did not necessarily lead to better reporting. Rather, it created a false sense of objectivity about patient and public involvement, and this might serve to hide power imbalances and tokenism in the research process. We recommend that instead of relying on such checklists, that researchers, reviewers, editors and readers reflect on patient and public involvement processes and the ways in which these are reported. We also make recommendations to make future iterations of the GRIPP more inclusive.

Abstract Background There are increasing calls for patient involvement in sharing health research results, but no evidence-based recommendations to guide such involvement. Our objectives were to: (1) conduct a systematic review of the evidence on patient involvement in results sharing, (2) propose evidence-based recommendations to help maximize benefits and minimize risks of such involvement and (3) conduct this project with patient authors. Methods To avoid research waste, we verified that no systematic reviews were registered or published on this topic. We co-created, with patients, a PRISMA-P–compliant protocol. We included peer-reviewed publications reporting the effects of patient involvement in preparing peer-reviewed publications or results summaries from health research studies. We searched (9/10/2017) MEDLINE, EMBASE and the Cochrane Database of Systematic Reviews, and secondary information sources (until 11/06/2018). We assessed the risk of bias in eligible publications and extracted data using standardized processes. To evaluate patient involvement in this project, we co-created a Patient Authorship Experience Tool. Results All nine eligible publications reported on patient involvement in preparing publications; none on preparing results summaries. Evidence quality was moderate. A qualitative synthesis of evidence indicated the benefits of patient involvement may outweigh the risks. We have proposed 21 evidence-based recommendations to help maximize the benefits and minimize the risks when involving patients as authors of peer-reviewed publications. The recommendations focus on practical actions patient and non-patient authors can take before (10 recommendations), during (7 recommendations) and after (4 recommendations) manuscript development. Using the Patient Authorship Experience Tool, both patient and non-patient authors rated their experience highly. Conclusions Based on a systematic review, we have proposed 21 evidence-based recommendations to help maximize the benefits and minimize the risks of involving patients as authors of peer-reviewed publications.