ArticleResearch involvement and engagement2020
Patient involvement in preparing health research peer-reviewed publications or results summaries: a systematic review and evidence-based recommendations.
Article in Research involvement and engagement, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers, 3 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
29 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Evaluation of research co-design in health: a systematic overview of reviews and development of a framework.Implementation science : IS · 2024Pooled it
- How are health research partnerships assessed? A systematic review of outcomes, impacts, terminology and the use of theories, models and frameworks.Health research policy and systems · 2022Pooled it
- Patient and Patient Group Engagement in Cancer Clinical Trials: A Stakeholder Charter.Current oncology (Toronto, Ont.) · 2021Guideline
- Embedding Patient and Public Engagement in a Cancer Project: Protocol for a Qualitative Study.JMIR research protocols · 2026Article
- Adolescent Involvement in Co-Authoring Peer Reviewed Publications: A Reflection of Challenges and Best Practice Recommendations.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Supporting researchers to involve patient partners in health service research: developing and assessing the feasibility and acceptability of a co-produced training programme for researchers.Research involvement and engagement · 2026Article
- Article
- A rapid evaluation of the reporting and publishing practices of patient and public involvement and engagement in health research within a UK university institute.Research involvement and engagement · 2026Review
- Barriers and solutions for healthcare professionals to involve patients as partners in oncology research: Project RISE.Future oncology (London, England) · 2026Article
- Methods of Engaging Interest-Holders in Healthcare Evidence Syntheses: A Scoping Review.Cochrane evidence synthesis and methods · 2026Review
- The perspectives of people with lived experience, families, and researchers with the manuscript writing process in mental health and substance use research: a qualitative study.Research involvement and engagement · 2025Article
- Article
- How are patient partners involved in health service research? A scoping review of reviews.Research involvement and engagement · 2025Review
- Co-Authoring and Reporting on Lived Experience Engagement in Mental Health and/or Substance Research: A Qualitative Study and Guidance Document.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Enhancing patients' role in scientific writing: insights from a global participatory approach with people with multiple sclerosis.Research involvement and engagement · 2025Article
- Patient partner engagement in the publication process: challenges and possible solutions.BMC medical research methodology · 2025Review
- Conducting Patient-Oriented Research in Pediatric Populations: A Narrative Review.Children (Basel, Switzerland) · 2024Review
- Article
- Why publish? An interview study exploring patient innovators' reasons for and experiences of scientific publishing.Research involvement and engagement · 2024Article
- Involving parents of children treated for cancer in Sweden as public contributors to inform the design and conduct of an evaluation of internet-administered self-help for parents of children treated for cancer: a protocol.Research involvement and engagement · 2024Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThere 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.
methodsTo 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.
resultsAll 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.
conclusionsBased 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.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.