ReviewJournal of cancer survivorship : research and practice2026
Lived experience leadership in cancer research: a scoping review of conceptual definitions, roles, responsibilities, and impacts.
Review in Journal of cancer survivorship : research and practice, 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
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.
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.
Who cites it
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe 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.
methodsFollowing 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.
resultsTwelve 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.
conclusionsLived 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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Identifiers
42734874What OpenQuestion holds
Registered trials
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.