Adams Claire, Nassar Elsa-Lynn, Nordlund Julia, Hu Sophie, Rice Danielle B, Cook Vanessa, Boruff Jill, Thombs Brett D
Lady Davis Institute for Medical Research, Jewish General Hospital, 3775 Cote Ste Catherine Road, Pavilion H4.83, Montreal, QC, H3T 1E2, Canada.
Department of Psychiatry, McGill University, Montreal, QC, Canada.
Res Involv Engagem. 2024 Nov 6;10(1):115. doi: 10.1186/s40900-024-00651-6.
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).
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.
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%).
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.
我们评估了发表在高影响力精神病学杂志上的研究，以评估：（1）文章中报告是否让有实际生活经验者参与的比例；（2）可能让有实际生活经验者参与的比例；以及，如果有参与情况，（3）研究阶段（规划、实施、解读、传播）；（4）参与程度（咨询、纳入、合作）。
我们于2022年12月14日在PubMed上搜索影响因子≥10的精神病学杂志上的文章，并根据研究前的精确性估计，按时间倒序回顾文章，直至纳入141篇。我们联系作者以获取有关参与情况的信息。
141项研究中有3项（2%）在文章中报告了有实际生活经验者的参与情况。在其他138项研究中，74位作者回复了跟进邮件，其中22位报告他们让有实际生活经验者参与了，但未在文章中报告。根据对未回复者参与情况的假设，我们估计总体上18%-31%的研究可能让有实际生活经验者参与了。参与发生在研究规划阶段（70%），很少在解读阶段（35%）。大多数是咨询（提供意见或观点，53%），很少是合作（11%）。
在精神病学研究中让有实际生活经验者参与并不常见，而且当确实发生参与时，人们通常只是被咨询，而没有在决策中发挥有影响力的作用。资助机构、伦理委员会、杂志和学术机构应采取措施，支持在精神病学研究中让有实际生活经验者参与。
