Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2026

Finding their place: Consumer leadership in cancer care (141415)

Julia Paxino 1 2 , Natalie Maxwell-Davis 2 , Naveena Nekkalapudi 2 , Janne Williams 2 , Randall Adison 2 , Peter Gourlay 2 , Paul Harrison 2 , Tracey Bilson 2 , Charlotte Denniston 1 2 , Fiona Dangerfield 2 3 , Stacey Panozzo 2 4 , Joanne Britto 2 5 , Pauline Ryan 2 5 , Walter Eppich 1 2 6
  1. Collaborative Practice Centre, Faculty of Medicine, Dentistry and Health Sciences, The University of Melbourne, Melbourne, VIC, Australia
  2. Consumers Leading Transformational Change in the Cancer Sector: A State-wide initiative, Melbourne, Vic, Australia
  3. Violet Vines Marshman Centre for Rural Health Research, La Trobe Rural Health School, La Trobe University, Bendigo, Vic, Australia
  4. Regional Trials Network, Albury-Wodonga, Vic, Australia
  5. Victorian Comprehensive Cancer Centre (VCCC) Alliance, Melbourne, Vic, Australia
  6. Department of Medical Education, Melbourne Medical School, University of Melbourne, Melbourne, Vic, Australia

Background

Consumer leadership is increasingly recognised as critical to improving cancer research, services and policy (1). However, little is known about how individuals develop as consumer leaders or how leadership identities evolve over time (2). Understanding these developmental processes is essential for designing initiatives that support meaningful and sustainable consumer leadership within the cancer sector.

Methods

A longitudinal qualitative study using a consumer-led research approach was conducted alongside a Victorian statewide consumer leadership program. Participants with lived experience of cancer (n=21) completed semi-structured interviews at three timepoints across the program. Longitudinal narrative analysis was used to examine changes in participants' understandings of consumer leadership, leadership identities, and envisioned future contributions.

Results

Preliminary analysis identified diverse leadership developmental trajectories. A common pattern involved an expansion of possibilities, followed by increasing intentionality about future contributions. Participants moved from asking what consumer leadership might involve to identifying where their skills, interests and values could have the greatest impact. Some described "doubling down" on existing strengths, while others began "cherry-picking" opportunities aligned with their perceived strengths, interests and capacity. Over time, participants became more selective and strategic, recognising both opportunities for impact and the importance of self-care.

Conclusions

Consumer leadership development is not a linear process of becoming more confident but a dynamic process of identity formation through which consumers develop increasingly intentional understandings of their strengths, values and potential contributions to cancer system improvement. The diversity of developmental trajectories highlights the need for leadership initiatives that recognise and support multiple pathways into consumer leadership. Longitudinal qualitative research offers a unique lens for understanding how consumer leadership identities evolve over time and can inform the design and evaluation of future consumer leadership programs.

 

  1. National Health and Medical Research Council. Statement on Consumer and Community Involvement in Health and Medical Research. Canberra: NHMRC; 2026.
  2. Paxino J, Maxwell-Davis N, Nekkalapudi N, et al. Moving Beyond Visibility and the "Glass Box" Effect: A Scoping Review of Consumer Leadership in Healthcare [preprint]. SocArXiv. 2026