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

Abstract

Abstract Background We evaluated studies published in high-impact psychiatry journals to assess (1) the proportion that reported in articles whether they engaged people with lived experience; (2) the proportion that likely engaged people with lived experience; and, if engagement occurred, (3) stages of research (planning, conduct, interpretation, dissemination); and (4) engagement level (consult, involve, partner). Methods We searched PubMed on December 14, 2022, for articles in psychiatry journals with impact factor ≥ 10 and reviewed articles in reverse chronological order until 141 were included, based on pre-study precision estimation. We contacted authors to obtain information on engagement. Results Three of 141 (2%) studies reported engagement of people with lived experience in articles. Of the other 138 studies, 74 authors responded to follow-up emails and 22 reported they engaged people with lived experience but did not report in the article. Depending on assumptions about engagement by non-responders, we estimated, overall, 18-31% of studies may have engaged people with lived experience. Engagement occurred in research planning (70%) and rarely interpretation (35%). Most involved consultation (providing opinions or perspectives, 53%) and few involved partnership (11%). Conclusions Engagement of people with lived experience in psychiatry research is uncommon, and when it does occur people are typically consulted but not engaged in roles with influence on decision-making. Funding agencies, ethics committees, journals, and academic institutions should take steps to support engagement of people with lived experience in psychiatry research.

Keywords

• Mental health
• Methodology
• Patient involvement
• Public involvement
• Proportions
• Research partnerships