ArticleHealth expectations : an international journal of public participation in health care and health policy2025
Co-Authoring and Reporting on Lived Experience Engagement in Mental Health and/or Substance Research: A Qualitative Study and Guidance Document.
Article in Health expectations : an international journal of public participation in health care and health policy, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
13 citing papers in PubMed.
- The Many Faces of Engagement: A Scoping Review of Paediatric Patient and Family Engagement in Clinical Care, Education and Research.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Meta-Research on the Science of Lived Experience Engagement in Mental Health and Substance Use Health Research: A Scoping Review and Qualitative Synthesis.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Do new labels solve old problems? Conceptual, ethical, and clinical challenges of constructing restrictive eating behaviours as "self-harm".Journal of eating disorders · 2026Article
- "Truly having a conversation with each member about their needs": accessibility considerations for the engagement of people with lived and living experience and caregivers in mental health and substance use health research.Research involvement and engagement · 2026Article
- Tools and Resources for Engaging People With Lived and Living Experience and Caregivers in Mental Health and Substance Use Research: Findings From a Survey and Community Consultation Events.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- "Being treated as the expert:" A blueprint for a community advisory board approach to elevate the voice of people with living experience with substance use in academic research.Journal of clinical and translational science · 2026Article
- Patient- and Public-Led Research - How Is It Defined and Practiced: A Scoping Review.Journal of patient experience · 2026Article
- A Case Study of Veteran Patient-Researcher Partnerships in Mental Health Research and Practice: Three Recommendations From a Veteran Patient Engaged in Research (VPER).Health expectations : an international journal of public participation in health care and health policy · 2025Article
- The perspectives of people with lived experience, families, and researchers with the manuscript writing process in mental health and substance use research: a qualitative study.Research involvement and engagement · 2025Article
- A systematic review of co-production approaches that involve family members, loved ones, or carers in the development of mental health or substance use resources/interventions.Research involvement and engagement · 2025Review
- 'Every Voice Matters': A Photovoice Study on the Personal Impacts of Co-Production in Recovery Colleges.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Gaps in the Engagement of People With Lived and Living Experience and Caregivers in Mental Health and Substance Use Health Research: A Qualitative Study of Untapped Potential.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Article
Corrections and comments
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Authors and funding
8 authors.
Funding
Abstract
introductionThere is a move towards engaging people with lived experience and families (PWLE/F)-also referred to as PWLE/F engagement-in mental health and/or substance use research. However, PWLE/F engagement is inadequately reported on in mental health and/or substance use research papers.
objectiveTo understand what PWLE/F and researchers perceive are important components to report on related to engagement in mental health and/or substance use research.
methodsThis study included a qualitative description study underpinned by pragmatism. Data were collected through virtual interviews with 13 PWLE/F and 12 researchers across Canada and analysed using template analysis. The results were used to develop a reporting guidance document for engagement in mental health and/or substance use research.
resultsThe results from the template analysis were structured through the following themes: (1) establishing the need for a guidance document; (2) aspects of engagement to report and reflect on; (3) guidance around co-authorship with PWLE/F; (4) practical tips for reporting on engagement and (5) considerations for journals. Participants identified a need for tailored guidance that is flexible and reflective, yet can promote transparency, accountability and learning in the field. A reporting guidance document was developed for engagement in mental health and/or substance use research that balances flexibility and standardisation while incorporating reflection into reporting. Guidance around co-authorship with PWLE/F partners was also included.
conclusionThe guidance document is intended to be used as a roadmap to help guide authors to meaningfully write about engagement without the rigid boundaries of a reporting guideline. We encourage research teams that engage PWLE/F in mental health and/or substance use research to consider using the guidance document as they write up their work. PATIENT AND PUBLIC INVOLVEMENT: PWLE/F members were engaged throughout the study from conception to manuscript production. This included a PWLE partner on the doctoral committee and a Lived Experience Advisory Group consisting of two PWLE and one family partner.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.