Ethical Reflections on Co‑Authoring With People With Lived Experience Across Health, Education and Community Settings.

Authors

Hilary Moss, Katie Fitzpatrick, Patricia O'Shea, Hannah Healy, Anne MacFarlane

Published in

Health expectations : an international journal of public participation in health care and health policy. Volume 29. Issue 6.

Abstract

Co‑authoring with people who have lived experience is increasingly recognised as essential to meaningful patient and public involvement (PPI) (Involve 2012). Yet genuine power‑sharing in academic writing remains rare, particularly in music and health research. Traditional research models position participants as 'informants', while academic authors retain interpretive authority. Participatory Learning and Action (PLA) offers principles and methods to shift research from extractive, top-down models towards collaborative knowledge creation.
This viewpoint argues that co‑authoring with lived‑experience contributors is not merely a methodological choice but an ethical stance requiring time, humility and structural disruption. Drawing on the experience of co‑editing a book with 11 lived‑experience authors, this article briefly examines the ethical, relational and practical challenges of co‑authorship through the lens of PLA reversals.
Nine themes are presented and discussed based on the authors reflections of co-authoring a book with participants with lived experience.
Co-authoring with participants with lived experience is not only feasible but vital. PLA reversals support meaningful, ethical and impactful collaboration.

PMID:
42952362
Bibliographic data and abstract were imported from PubMed on 29 Oct 2026.

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