What does this research mean for the field?

Lived experience leadership in cancer research remains inconsistently defined and uncommonly reported, with survivors rarely involved as substantive leaders despite the increasing recognition of their value. Novelty: ClaimNovelty.SYNTHESIS. Consensus alignment: ConsensusAlignment.NEUTRAL.

What question did this study set out to answer?

To examine how lived experience leadership is conceptualized, enacted, and reported within cancer research literature.

September 14, 2026Journal of Cancer SurvivorshipOpen Access

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

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Authors

CSClarissa E. Schilstra AGA. Glinatsis MEM. Emery

Discussion

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Overview

Scoping review reveals limited substantive leadership roles for cancer survivors in oncology studies, highlighting the need for standardized frameworks and recognition of lived expertise.

Key Points

To examine how lived experience leadership is conceptualized, enacted, and reported within cancer research literature.
Conducted a scoping review in accordance with PRISMA-ScR guidelines across Google Scholar, PsycINFO, PubMed, and EMBASE for peer-reviewed English-language articles published from 2015 to 2025.
Screened for cancer research papers describing lived experience involvement that extended beyond basic consultative or participatory methods.
Included 12 publications, predominantly originating from the UK and USA and focusing on adult cancer populations.
Most publications framed lived experience leadership as 'co-researchers' assisting with document review, patient-facing materials, and dissemination, with only four reporting substantive leadership roles.
Two publications characterized the 'embodied researcher,' defined as an investigator who integrates personal lived experience of cancer with formal academic expertise.

Cite This Study

Schilstra et al. (2026) studied this question.

synapsesocial.com/papers/6aa7dfc60926e14a848b3d68 https://doi.org/10.1007/s11764-026-02119-w

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September 14, 2026Journal of Cancer SurvivorshipOpen Access

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

View Full Paper

Ask AI

Bookmark

Authors

CSClarissa E. Schilstra AGA. Glinatsis MEM. Emery

Discussion

Member takes

Overview

Scoping review reveals limited substantive leadership roles for cancer survivors in oncology studies, highlighting the need for standardized frameworks and recognition of lived expertise.

Key Points

To examine how lived experience leadership is conceptualized, enacted, and reported within cancer research literature.
Conducted a scoping review in accordance with PRISMA-ScR guidelines across Google Scholar, PsycINFO, PubMed, and EMBASE for peer-reviewed English-language articles published from 2015 to 2025.
Screened for cancer research papers describing lived experience involvement that extended beyond basic consultative or participatory methods.
Included 12 publications, predominantly originating from the UK and USA and focusing on adult cancer populations.
Most publications framed lived experience leadership as 'co-researchers' assisting with document review, patient-facing materials, and dissemination, with only four reporting substantive leadership roles.
Two publications characterized the 'embodied researcher,' defined as an investigator who integrates personal lived experience of cancer with formal academic expertise.

Cite This Study

Schilstra et al. (2026) studied this question.

synapsesocial.com/papers/6aa7dfc60926e14a848b3d68 https://doi.org/10.1007/s11764-026-02119-w

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