Lived experience leadership in cancer research: a scoping review of conceptual definitions, roles, responsibilities, and impacts

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Publication Details

Journal
Journal of Cancer Survivorship
Published
2026-09-14
DOI
https://doi.org/10.1007/s11764-026-02119-w
Primary Topic
Mental Health and Patient Involvement
Type
article
Field-Weighted Citation Impact
0.00

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article

Lived experience leadership in cancer research: a scoping review of conceptual definitions, roles, responsibilities, and impacts

Clarissa E. Schilstra, B. Zebrack, C. K. Cheung, A. Smith et al.
Journal of Cancer Survivorship
Mental Health and Patient Involvement
article

Lived experience leadership in cancer research: a scoping review of conceptual definitions, roles, responsibilities, and impacts

Clarissa E. Schilstra, B. Zebrack, C. K. Cheung, A. Smith, M. Emery, U. M. Sansom-Daly, A. Glinatsis
article en

Abstract

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.

Journal of Cancer Survivorship
University of Maryland, Baltimore (US), The University of Sydney (AU), UNSW Sydney (AU), Cooperative Trials Group for Neuro-Oncology (AU), Prince of Wales Hospital (AU), Children's Cancer Institute Australia (AU), Michigan Center for Translational Pathology (US), Sydney Children's Hospital (AU), Cancer Council NSW (AU)
CanTeen, University of New South Wales
Industry, innovation and infrastructure
Openalex Percentile: Top 7%
Mental Health and Patient Involvement
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