Secret or superpower? A narrative reflection on navigating dual identities as cancer survivors and cancer scientists.

Authors

Ursula M Sansom-Daly, Clarissa E Schilstra

Published in

Journal of cancer survivorship : research and practice. Sep 25, 2026. Epub Sep 25, 2026.

Abstract

International research policy increasingly recognises lived experience as a form of expertise, encouraging meaningful involvement of lived experience expertise in research. However, such guidance often assumes a binary distinction between researchers and those with lived experience, offering little direction for individuals who embody both identities. This commentary examines the tensions, opportunities, and ethical considerations faced by adolescent and young adult (AYA) cancer survivors who also work as psycho-oncology researchers.
Drawing on our positionality as survivor-scientists, we reflect on how disclosure of lived experience is shaped by academic culture, career stage, mentorship, and evolving norms regarding experiential expertise.
Our narratives illustrate divergent pathways: one characterised by caution, driven by concerns about credibility and perceived bias, another enabled by mentorship that explicitly valued lived experience as an asset to rigorous research. Situating these reflections within existing literature on identity negotiation among AYA cancer survivors, we extend this work by examining how these challenges are intensified within academic and healthcare settings.
We call for a shift from binary thinking about research and lived experience expertise, toward a continuum of expertise. Clear guidance and cultural change are needed to enable the lived experience expertise of academic cancer researchers to enhance the inclusivity, relevance, and quality of cancer research.
This commentary highlights that lived experience of cancer should not undermine the credibility of academic cancer researchers. Rather, increased guidance and culture change can open pathways through which survivor-scientists can contribute their expertise safely and authentically.

PMID:
42789211
Bibliographic data and abstract were imported from PubMed on 26 Sep 2026.

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