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; Proportions; Public involvement; Research partnerships.
Engaging people with lived experience in research is important to ensure research is relevant to people’s needs. We do not know, however, how often people with lived experience are engaged in psychiatry research and whether engagement is reported in journal articles. We evaluated studies published in top psychiatry journals and assessed the (1) percentage that reported in the articles whether they engaged people with lived experience and (2) percentage that likely engaged people with lived experience based on author queries. Additionally, if people with lived experience were engaged in the studies, we also evaluated (3) the stages of research that people with lived experience were involved in (planning, conduct, interpretation, dissemination); and (4) their level of influence on decision-making (consult, involve, partner). Articles published in psychiatry journals with impact factor greater than or equal to 10 were eligible. We searched for studies on PubMed, a popular database of medical research, and reviewed articles from most to least recent until 141 were included. We calculated that we needed to review 141 articles to have enough to make reasonably precise estimates (confidence intervals around estimates of 10% or less) of how many studies engaged people with lived experience. We found that 3 of 141 (2%) studies reported on engagement in articles. We contacted authors of studies that did not report on engagement in their articles and asked whether they engaged people with lived experience. Of the 138 articles that did not report on engagement, 74 authors responded to email queries, and 22 reported they engaged people with lived experience. We estimated, overall, 18-31% of studies may have engaged people with lived experience, depending on whether we assumed that non-responders did or did not engage. Among all studies that engaged people with lived experience, both those reported and unreported in the articles, engagement commonly occurred in research planning (N = 14 of 20 studies, 70%) but rarely in the interpretation of results (N = 7 of 20 studies, 35%). Engagement mostly involved consultation, where people with lived experience provided perspectives to researchers (N = 10 of 19 studies, 53%). Few involved partnership, where they worked with researchers to make decisions (N = 2 of 19 studies, 11%). Funding agencies, ethics committees, academic journals, and universities should take steps to support engagement of people with lived experience in psychiatry research.
© 2024. The Author(s).