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Lived experience leadership in cancer research: a scoping review of conceptual definitions, roles, responsibilities,
C E Schilstra1,2, A Glinatsis3, M Emery3
1Behavioural Sciences Unit, School of Clinical Medicine, Faculty of Medicine and Health, UNSW Sydney, Building C29 HTH, Level 3, 55 Botany Street, Kensington, NSW, 2033, Australia. c.schilstra@unsw.edu.au.
Background:
The meaningful integration of lived experience expertise into cancer research is increasingly recognized as essential to improving research relevance, quality, and impact. However, the extent to which people with lived experience of cancer hold leadership roles within academic research remains unclear. This scoping review examined how lived experience leadership is conceptualized, enacted, and reported in cancer research.
Methods:
Following PRISMA-ScR guidelines, searches were conducted in Google Scholar, PsycINFO, PubMed, and EMBASE (2015-2025). Eligible publications were peer-reviewed, English-language cancer research articles that described lived experience involvement beyond consultative/participatory methods.
Results:
Twelve publications were included, mostly from the UK and the USA, and focused on adult cancer. Lived experience leadership was typically framed as involvement of "co-researchers" who provided feedback on study documents, advised on patient-facing materials, and contributed to dissemination activities. Four publications described lived experience researchers in substantive leadership roles, and two employed the concept of the "embodied researcher"-described as individuals who draw upon both lived and academic expertise to lead research.
Conclusions:
Lived experience leadership in cancer research remains inconsistently defined and uncommonly reported. Advancing the lived experience leadership in cancer research, and recognition of this leadership, will require clearer frameworks, infrastructure, and recognition of researcher positionality to enable genuine lived experience leadership.
Implications For Cancer Survivors:
This review highlights that while lived experience is increasingly valued in cancer research, survivors are still rarely involved as substantive leaders of cancer research. Strengthening pathways for survivor leadership could help ensure that cancer research is more relevant, equitable, and responsive.
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