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 L Woolley

doi:10.1186/s40900-020-00190-w

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

Res Involv Engagem. 2020 Jun 24:6:34. doi: 10.1186/s40900-020-00190-w. eCollection 2020.

Authors

Lauri Arnstein¹, Anne Clare Wadsworth^{1

2}, Beverley Anne Yamamoto^{3

4

5}, Richard Stephens^{6

7}, Kawaldip Sehmi⁸, Rachel Jones⁹, Arabella Sargent¹⁰, Thomas Gegeny¹¹, Karen L Woolley^{1

12

13

14}

Affiliations

¹ Envision the Patient - Envision Pharma Group, Suite 5.11, 5th Floor, 1 Lyric Square, London, W6 0NB UK.
² Alligent EU - Envision Pharma Group, Wilmslow, UK.
³ Osaka University, Osaka, Japan.
⁴ Hereditary Angioedema Japan (Registered NPO), Hyogo, Japan.
⁵ Hereditary Angioedema International (Registered NPO/Charity), Fairfax City, VA USA.
⁶ Consumer Forum, National Cancer Research Institute, London, UK.
⁷ Research Involvement and Engagement, London, UK.
⁸ International Alliance of Patients' Organizations, London, UK.
⁹ Swii.ch Health, Manchester, UK.
¹⁰ Curo - Envision Pharma Group, London, UK.
¹¹ Engage - Envision Pharma Group, Southport, CT USA.
¹² ProScribe KK - Envision Pharma Group, Tokyo, Japan.
¹³ University of Queensland, Brisbane, Queensland Australia.
¹⁴ University of the Sunshine Coast, Maroochydore DC, Queensland Australia.

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.

Keywords: Authorship; Clinical trials; Health research; Medical writing; PPI; Patient and public involvement; Patient author; Patient participation; Research reporting; Systematic review.