Patient involvement in preparing health research peer-reviewed publications or results summaries: a systematic review and evidence-based recommendations

Lauri Arnstein; Anne Clare Wadsworth; Beverley Anne Yamamoto; Richard Stephens; Kawaldip Sehmi; Rachel Jones; Arabella Sargent; Thomas Gegeny; Karen Woolley

doi:10.1186/s40900-020-00190-w

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Patient involvement in preparing health research peer-reviewed publications or results summaries: a systematic review and evidence-based recommendations

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Patient involvement in preparing health research peer-reviewed publications or results summaries: a systematic review and evidence-based recommendations

Lauri Arnstein, Anne Clare Wadsworth, Beverley Anne Yamamoto, Richard Stephens, Kawaldip Sehmi, Rachel Jones, Arabella Sargent, Thomas Gegeny and Karen Woolley

Research Involvement and Engagement, Vol.6(1), pp.1-14

2020

DOI: https://doi.org/10.1186/s40900-020-00190-w

PMCID: PMC7313171

PMID: 32587753

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Abstract

Patient participation

Health research

Patient and public involvement

PPI

Clinical trials

Patient author

Systematic review

Research reporting

Medical writing

authorship

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.

Details

Title: Patient involvement in preparing health research peer-reviewed publications or results summaries: a systematic review and evidence-based recommendations
Authors: Lauri Arnstein (Author) - Envision Pharma Group
Anne Clare Wadsworth (Author) - Envision Pharma Group
Beverley Anne Yamamoto (Author) - The University of Osaka
Richard Stephens (Author) - National Cancer Research Institute
Kawaldip Sehmi (Author) - International Alliance of Patients’ Organizations, London, UK
Rachel Jones (Author) - Swii.ch Health, Manchester, UK
Arabella Sargent (Author) - Envision Pharma Group
Thomas Gegeny (Author) - Envision Pharma Group
Karen Woolley (Author) - University of the Sunshine Coast, Queensland, School of Health and Sport Sciences - Legacy
Publication details: Research Involvement and Engagement, Vol.6(1), pp.1-14
Publisher: BioMed Central
Date published: 2020
DOI: 10.1186/s40900-020-00190-w
ISSN: 2056-7529
PMID: 32587753; PMC7313171
Copyright note: Copyright © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
Organisation Unit: UniSC Clinical Trials Centre; University of the Sunshine Coast, Queensland; School of Health and Sport Sciences - Legacy
Language: English
Record Identifier: 99469907702621
Output Type: Journal article

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