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- Title
Patient involvement in preparing health research peer-reviewed publications or results summaries: a systematic review and evidence-based recommendations.
- Authors
Arnstein, Lauri; Wadsworth, Anne Clare; Yamamoto, Beverley Anne; Stephens, Richard; Sehmi, Kawaldip; Jones, Rachel; Sargent, Arabella; Gegeny, Thomas; Woolley, Karen L.
- 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.
- Subjects
PATIENT participation; META-analysis; PUBLIC health research; INFORMATION resources; PUBLICATION bias
- Publication
Research Involvement & Engagement, 2020, Vol 6, Issue 1, p1
- ISSN
2056-7529
- Publication type
Article
- DOI
10.1186/s40900-020-00190-w