Evidence map›Paper›PMID 41992724›Full record

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.

Patte Randal, Stefan Heinz

Abstract read
In one paragraph

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.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

2 authors.

Patte RandalExpertise by Lived/Living Experience.
Stefan HeinzDivision of Health, University of Waikato, Hamilton, New Zealand.ORCID 0009-0002-6374-0420

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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.

Indexed as

AuthorshipLeadershipHumansauthorshipco‐productionepistemic injusticeepistemic justiceethicslived experienceporous solidaritypower

Identifiers

PMID41992724
PMCPMC13087439

What OpenQuestion holds

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LicenceCC BY
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Registered trials

None linked

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.