Engagement of people with lived experience in studies published in high-impact rheumatology journals: a meta-research review

Engagement of people with lived experience in health research improves research quality and translation 1 Yeoh SA Burke B Castelino M et al. Patient and public involvement in rheumatology research: embracing the wave of change. Lancet Rheumatol. 2021; 3: e540-e542 Summary Full Text Full Text PDF PubMed Google Scholar , 2 Schoemaker CG Richards DP de Wit M Matching researchers' needs and patients' contributions: practical tips for meaningful patient engagement from the field of rheumatology. Ann Rheum Dis. 2023; 82: 312-315 Crossref PubMed Scopus (2) Google Scholar and is encouraged or mandated by major national research funding agencies worldwide. 3 Patient-Centered Outcomes Research InstituteAbout PCORI. https://www.pcori.org/about/about-pcoriDate: 2024 Date accessed: May 20, 2024 Google Scholar , 4 Canadian Institutes of Health ResearchStrategy for patient-oriented research. https://cihr-irsc.gc.ca/e/41204.htmlDate accessed: May 20, 2024 Google Scholar , 5 UK National Institute for Health and Care ResearchA brief guide to public involvement in funding applications. https://www.nihr.ac.uk/documents/a-brief-guide-to-public-involvement-in-funding-applications/24162#planning-and-preparing-for-public-involvementDate: 2020 Date accessed: May 20, 2024 Google Scholar , 6 Australian National Health and Medical Research CouncilConsumer and community engagement. https://www.nhmrc.gov.au/about-us/consumer-and-community-involvement/consumer-and-community-engagementDate accessed: May 20, 2024 Google Scholar We assessed studies published in accepted or final form between Jan 1, 2022, and March 3, 2023, in high-impact rheumatology journals to evaluate the proportion that reported whether they engaged people with lived experience and that actually engaged people with lived experience, including engagement reported and not reported in articles. Among studies that engaged people with lived experience, we evaluated research stages when engaged (ie, planning, conduct, interpretation, or dissemination) and level of decision making (ie, consultation by providing perspectives; involvement in research team and advising on research decisions; or partnership, including decision making). 7 International Association for Public ParticipationIAP2 public participation spectrum. https://www.iap2.org.au/resources/spectrum/Date accessed: May 20, 2024 Google Scholar