ArticleHealth expectations : an international journal of public participation in health care and health policy2026
Beyond Tokenism: Making Lived Experience Leadership Visible in Co-Produced Research Authorship.
Article in Health expectations : an international journal of public participation in health care and health policy, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
What it found
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Authors and funding
2 authors.
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Abstract
backgroundCo-production research values the lived/living experience (LE) of people navigating health challenges. Despite this, traditional academic authorship often disregards power dynamics that participatory research seeks to address. MAIN BODY: This critical reflection argues for centring LE collaborators as first authors in co-production research. We analyse authorship through Foucauldian power/knowledge dynamics, Derrida's deconstructive ethics and Levinasian ethics of responsibility, drawing on Critchley's synthesis of these traditions. This multiple lens reveals a tension: co-production research requires political solidarity ('us') to challenge epistemic injustice, yet demands ethical vigilance to preserve individual voices. The concept of porous solidarity is useful here. Acknowledging the value of experience-based expertise by means of first authorship embodies this framework: it redistributes epistemic authority and shifts research from studies about populations to studies by/with those populations.
conclusionsFirst author placement of experience-based experts where appropriate, plus explicit acknowledgement of all researchers' relevant LE where freely given, offers both an ethically responsive approach and a practical strategy for aligning co-production processes with publication practices. By centring LE collaborators as first authors and acknowledging the LE of academic researchers, co-production research teams can embody the principle rooted in disability activism, of 'nothing about us without us-leading' in academic literature. This supports epistemic justice, creates solidarity and builds capacity within communities conducting research. PATIENT OR PUBLIC CONTRIBUTION: This lived experience-led article was co-produced by two researchers with lived experience. Experiential expertise shaped the conception, argument development, drafting and critical revision of the manuscript and the practical implications presented.
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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.