Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2026

What do we mean by ‘lived experience leadership’? Getting precise about defining the role of lived experience in cancer research leadership (146586)

Ursula M Sansom-Daly 1 2 3 , Clarissa E Schilstra 1 2 , Anna Glinatsis 1 , Mark Emery 1 , Brad Zebrack 4 , Christabel K Cheung 5 , Andrea L Smith 6 7
  1. Behavioural Sciences Unit, Discipline of Paediatrics & Child Health, School of Clinical Medicine, UNSW Medicine and Health, UNSW Sydney, Kensington, NSW, Australia
  2. Minderoo Children's Comprehensive Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia
  3. Sydney Youth Cancer Service, Prince of Wales/Sydney Children's Hospitals, Randwick, NSW, Australia
  4. School of Social Work and Rogel Cancer Center, University of Michigan, Ann Arbor, Michigan, USA
  5. University of Maryland, School of Social Work, Baltimore, MD, USA
  6. The Daffodil Centre, University of Sydney and Cancer Council NSW, Sydney, NSW, Australia
  7. University of Sydney, Camperdown, NSW, Australia

Background 

The mantra “Nothing about us without us” informs contemporary cancer research. Increasingly, policy and best-practice research standards internationally highlight that the meaningful integration of lived experience expertise into cancer research is essential to improving the relevance, quality, and impact of research. Yet, while patient and public involvement methods have expanded internationally, the extent to which people with lived experience of cancer hold leadership roles within academic cancer research remains unclear. Wholly led by investigators with lived experience of cancer, this scoping review aimed to examine 1) how lived experience leadership is conceptualised, enacted, and reported across cancer research; 2) what roles and responsibilities individuals with lived experience hold in research; and 3) barriers and enablers to incorporating meaningful lived experience leadership in cancer research.

Methods

Following PRISMA‑Scoping Review 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 or participatory methods.

Results

Of 5,228 publications screened, 12 met inclusion criteria. Most studies originated from the United Kingdom and United States, focused predominantly on psychosocial research, in adult populations. Lived experience leadership was typically framed as involvement of “co‑researchers” or “research partners,” with responsibilities centered on providing feedback on study documents, advising on patient-facing materials, and contributing 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 from conceptualisation to dissemination.

Conclusions

Overall, lived experience leadership in cancer research remains inconsistently defined and uncommonly reported in peer-reviewed literature. Advancing equitable integration of lived experience expertise will require clearer conceptual frameworks, supportive infrastructure, and recognition of researcher positionality to enable genuine leadership across the research continuum.