Engagement of people with lived experience in studies published in high-impact psychiatry journals: meta-research review
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...
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| Format: | Article |
| Language: | English |
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BMC
2024-11-01
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| Series: | Research Involvement and Engagement |
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| Online Access: | https://doi.org/10.1186/s40900-024-00651-6 |
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| author | Claire Adams Elsa-Lynn Nassar Julia Nordlund Sophie Hu Danielle B. Rice Vanessa Cook Jill Boruff Brett D. Thombs |
| author_facet | Claire Adams Elsa-Lynn Nassar Julia Nordlund Sophie Hu Danielle B. Rice Vanessa Cook Jill Boruff Brett D. Thombs |
| author_sort | Claire Adams |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-b9fba500dc394005ac3dd67269a5aae8 |
| institution | DOAJ |
| issn | 2056-7529 |
| language | English |
| publishDate | 2024-11-01 |
| publisher | BMC |
| record_format | Article |
| series | Research Involvement and Engagement |
| spelling | doaj-art-b9fba500dc394005ac3dd67269a5aae82025-08-20T02:50:03ZengBMCResearch Involvement and Engagement2056-75292024-11-0110111210.1186/s40900-024-00651-6Engagement of people with lived experience in studies published in high-impact psychiatry journals: meta-research reviewClaire Adams0Elsa-Lynn Nassar1Julia Nordlund2Sophie Hu3Danielle B. Rice4Vanessa Cook5Jill Boruff6Brett D. Thombs7Lady Davis Institute for Medical Research, Jewish General HospitalLady Davis Institute for Medical Research, Jewish General HospitalLady Davis Institute for Medical Research, Jewish General HospitalLady Davis Institute for Medical Research, Jewish General HospitalDepartment of Psychology, St. Joseph’s Healthcare HamiltonLady Davis Institute for Medical Research, Jewish General HospitalSchulich Library of Physical Sciences, Life Sciences, and Engineering, McGill UniversityLady Davis Institute for Medical Research, Jewish General HospitalAbstract 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.https://doi.org/10.1186/s40900-024-00651-6Mental healthMethodologyPatient involvementPublic involvementProportionsResearch partnerships |
| spellingShingle | Claire Adams Elsa-Lynn Nassar Julia Nordlund Sophie Hu Danielle B. Rice Vanessa Cook Jill Boruff Brett D. Thombs Engagement of people with lived experience in studies published in high-impact psychiatry journals: meta-research review Research Involvement and Engagement Mental health Methodology Patient involvement Public involvement Proportions Research partnerships |
| title | Engagement of people with lived experience in studies published in high-impact psychiatry journals: meta-research review |
| title_full | Engagement of people with lived experience in studies published in high-impact psychiatry journals: meta-research review |
| title_fullStr | Engagement of people with lived experience in studies published in high-impact psychiatry journals: meta-research review |
| title_full_unstemmed | Engagement of people with lived experience in studies published in high-impact psychiatry journals: meta-research review |
| title_short | Engagement of people with lived experience in studies published in high-impact psychiatry journals: meta-research review |
| title_sort | engagement of people with lived experience in studies published in high impact psychiatry journals meta research review |
| topic | Mental health Methodology Patient involvement Public involvement Proportions Research partnerships |
| url | https://doi.org/10.1186/s40900-024-00651-6 |
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