ArticleFrontiers in psychiatry2023
Epistemic injustice and mental health research: A pragmatic approach to working with lived experience expertise.
Article in Frontiers in psychiatry, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 54 papers, 2 of them syntheses that pooled it.
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.
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Who cites it
54 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Codesign of Mental Health Interventions With Young People From Racially Minoritised Populations: A Systematic Review of Methods and Outcomes.Health expectations : an international journal of public participation in health care and health policy · 2025Pooled it
- What Do We Know About Sharing Power in Co-Production in Mental Health Research? A Systematic Review and Thematic Synthesis.Health expectations : an international journal of public participation in health care and health policy · 2024Pooled it
- How, why, for whom, and in what contexts organisational and team dynamics shape, and are shaped by, service user researchers in higher education mental health research centres: a realist review protocol.Research involvement and engagement · 2026Review
- The Cycle of Equitable Codesign' Using Restorative Practice Principles to Address Epistemic Injustice and Advance Codesign in Mental Health.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Reintroducing community health psychology: A journal-based analysis of the visibility and integration of community-based participatory research.Applied psychology. Health and well-being · 2026Review
- Partnering with people with lived experience in eating disorder research: conceptual and practical considerations.Journal of eating disorders · 2026Article
- Co-Design With Mothers and Professionals to Enhance Care for Mothers Experiencing Adversity: Development of the METIC Model.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Co-Designing an Easy-Read Adult Social Care Outcomes Measure for Older People: Approach to and Reflections on Involving People Living With Dementia and Their Supporters.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Critically Exploring Self-Harm Through Lived Experience Perspectives: A Survivor-Controlled Integrative Review Employing Participatory Methodology.Health expectations : an international journal of public participation in health care and health policy · 2026Review
- Beyond Mistrust: A Semi-Systematic Review of Black Women's Health Care Decision-Making.Journal of racial and ethnic health disparities · 2026Review
- No Ethics Needed? Towards an Ethics of Care for Public and Patient Involvement and Engagement.Health expectations : an international journal of public participation in health care and health policy · 2026Review
- Dismantling the Diagnostic Construct of Borderline Personality Disorder: A Critical Discourse Analysis.International journal of mental health nursing · 2026Article
- Co-Production With Mental Health Family Carers: The Value, Outcomes and Benefits for Family Carers and Academic Researchers.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Barriers and opportunities for participation in health policy decision-making by civil society groups organized for cancer in Chile: a qualitative study.Health research policy and systems · 2026Article
- Article
- Exploring Responsible Research and Innovation (RRI) in youth mental health: reflections from researchers and young people.Research involvement and engagement · 2026Article
- Who gets to decide? Matters arising from Robinson et al. (2024), "Can people with longstanding bulimia nervosa suffer from severe and enduring eating disorder? A qualitative study".Journal of eating disorders · 2026Article
- Neurodiversity as an epistemic stress test for psychotherapy and health care: a neuroaffirmative conceptual analysis of relational-proximity priors in clinical, institutional, and AI-supported models.Frontiers in psychiatry · 2026Review
- Design Justice in Action: Co-Developing an HIV and Substance Use Linkage Intervention with Young Adults Involved in the Carceral System.Social sciences (Basel, Switzerland) · 2026Article
- Indigenous oral traditions and psychological well-being under modernization: from external valuation to relational selfhood.Frontiers in psychology · 2026Review
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
"Epistemic injustice" refers to how people from marginalized groups are denied opportunities to create knowledge and derive meaning from their experiences. In the mental health field, epistemic injustice occurs in both research and service delivery systems and particularly impacts people from racialized communities. Lived experience involvement and leadership are often proposed as methods of combatting epistemic injustice, a tool for ensuring the views of people at the center of an issue are heard and can inform decision-making. However, this approach is not without challenges. In this paper, we draw on our work as intermediary organizations that center lived experience perspectives to challenge epistemic injustice. We highlight two problems we have identified in working in the mental health research field: "elite capture" and "epistemic exploitation". We believe that these problems are barriers to the radical and structural change required for epistemic justice to occur. We propose a pragmatic approach to addressing these issues. Based on our work we suggest three considerations for researchers and our own organizations to consider when involving people with lived experience. These include reflecting on the purpose of creating knowledge, with a focus on impact. Embedding lived experience roles, with appropriate employment, support and remuneration, and acknowledging that it may be necessary to work alongside existing systems as a "critical friend" while developing new spaces and structures for alternative forms of knowledge. Finally, the mental health research system needs to change. We believe these three considerations will help us better move toward epistemic justice in mental health research.
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