ArticleHealth expectations : an international journal of public participation in health care and health policy2021
Measuring the impact of participatory research in psychiatry: How the search for epistemic justifications obscures ethical considerations.
Article in Health expectations : an international journal of public participation in health care and health policy, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 32 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
32 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Facilitators of and barriers to patient and public involvement in mental health research within university settings: a systematic review and meta-synthesis.Psychological medicine · 2025Pooled it
- The impact of Patient and Public Involvement in the SlowMo study: Reflections on peer innovation.Health expectations : an international journal of public participation in health care and health policy · 2022Trial
- 'That Essence of Empowerment': An Exploration of People Living With Mental Illness', Healthcare Professionals', and Researchers' Experiences of Co-Design.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Food insecurity in adults living with severe mental illness in Australia: an exploration of causes and experiences using a co-design approach.Social psychiatry and psychiatric epidemiology · 2026Article
- Practical learnings from a research engagement process involving youth with lived experience of suicidality.Research involvement and engagement · 2026Article
- Questions for more insightful and useful analyses of barriers and facilitators to public involvement and engagement in health research: a critical narrative review.Research involvement and engagement · 2026Review
- [DNVF Memorandum Participatory Health Services Research (Part 1)].Gesundheitswesen (Bundesverband der Arzte des Offentlichen Gesundheitsdienstes (Germany)) · 2026Article
- Developing and applying the 'Participatory Research to Action Framework' for meaningful engagement of experts-by-experience in applied health services research: a case study approach.Research involvement and engagement · 2025Article
- 'Co-Production Is Caring': Young People's Reflections on Responsible and Dialogic Co-Production in Youth Mental Health.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Dialogical meanderings - evaluation framework and learnings from stakeholder involvement in the co-design of a participatory systematic review.Research involvement and engagement · 2025Article
- Co-creating mental health promotion and prevention interventions with groups in vulnerable situations in Europe: a mixed-methods study protocol for co-creation implementation and participatory evaluation.Health research policy and systems · 2025Article
- Citizen science for research in public health: perspective.Frontiers in public health · 2025Article
- Participatory research with co-researchers with lived experience of psychosis high risk states.Frontiers in psychiatry · 2025Article
- Establishing a peer advisory board in a mental health ethics research group - challenges, benefits, facilitators and lessons learned.Frontiers in psychiatry · 2025Article
- Exploring the subjective experience of researchers and co-researchers with lived experience of psychosis high risk states: a qualitative analysis within a participatory research process.BMC psychiatry · 2024Article
- Neurodivergence, intersectionality, and eating disorders: a lived experience-led narrative review.Journal of eating disorders · 2024Review
- Science for tomorrow's neurosurgery: insights on establishing a neurosurgery patient group focused on developing novel intra-operative imaging techniques.Research involvement and engagement · 2024Article
- Bridging the divide: supporting and mentoring trainees to conceptualize, plan, and integrate engagement of people with lived experience in health research.Research involvement and engagement · 2024Article
- Co-designing a participatory evaluation of older adult partner engagement in the mcmaster collaborative for health and aging.Research involvement and engagement · 2024Article
- Being in a position to know: attuned responsiveness as the hallmark of experiential knowledge and expertise in mental healthcare.Frontiers in psychiatry · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
Abstract
contextBoth within politics and practice, the field of psychiatry is undergoing a significant transformation, as increasing emphasis is placed on the importance of involving those with lived experience in research. In response to this participatory turn, a push towards measuring the impact of patient involvement is also growing, seeking to identify how participation can improve research.
objectiveThis paper examines the recent push towards measuring impact in relation to justifications underlying the democratization of research in psychiatry, revealing a disconnect between the two, and harms that could result from a singular focus on measuring impact. DISCUSSION: While those promoting and regulating participatory research tend to focus on the epistemic benefits of such research, many have pointed to both epistemic and ethical justifications underlying participatory research. The ethical reasons for involving service users loom especially large in psychiatry, given its unique history of abuse, the ways diagnoses can be utilized as tools for oppression, and the prevalence of coercion. The current focus on measuring the impact of involvement can be harmful, in that it obscures ethical reasons in favour of epistemic ones, potentially exacerbating issues common to participatory research, such as role confusion and ineffective, tokenistic participatory efforts.
conclusionsWe argue that to take the ethical reasons behind involvement in mental health research seriously will involve looking beyond impact and towards sharing power. We suggest three ways this can be done: measuring more than impact, building service user capacities and sharing power in realms outside of research.
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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.