Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2026

Lead from Lived Experience: Integrating consumer leadership in the cancer sector    (144528)

Pauline Ryan 1 2 , Melissa Sheldon 2 , Sufi Salieh 2 , Rob Ormsby 2 , Kathleen Wilkins 2 , Sophy Athan 2 , Harry Thomas 2 , Gabrielle Prior 2 , David Attwood 2 , Liz Stickland 2 , Rochelle Serry 2 , Jo Cockwill 2 , Karen Bonello 2 , Lucinda Mathieson 2 , Amanda Piper 2 3 , Ali Peipers 4 , Katherine Burnard 4 , Pia Sappl 4 , RIki Long 2 3 , Cassie Haynes 2 5 , Stacey Panozzo 2 6 , Julia Paxino 2 7 , Lahiru Russell 8 , Michelle Barrett 1 2 , Joanne Britto 1 2
  1. Victorian Comprehensive Cancer Centre (VCCC) Alliance, Parkville, VIC, Australia
  2. Consumers Leading Transformational Change in the Cancer Sector: A State-wide initiative, Melbourne, Victoria
  3. Cancer Council Victoria, Melbourne, Victoria, Australia
  4. Health Voices Victoria, Burwood, Victoria, Australia
  5. Monash Partners Comprehensive Cancer Consortium, Clayton, Victoria, Australia
  6. Regional Trials Network-Victoria, Albury-Wodonga, Victoria, Australia
  7. Collaborative Practice Centre, University of Melbourne, Parkville, Victoria
  8. Deakin University, Burwood, Victoria, Australia

Aim 

Consumer leadership is increasingly recognised as a distinct form of expertise, yet remains inconsistently integrated across cancer research and care. A pilot study was conducted to determine whether a capability-building education program, combining formal learning, peer mentoring and opportunity to contribute directly to the cancer sector, strengthens skills and enhances preparedness to engage.   

Methods 

An immersive education program was co-designed with lived experience leaders and representatives from five cancer control organisations. The program entailed 10 weeks of education (in-person workshops, online modules), a real-world placements of up to 12 weeks, and peer mentoring. Intentional recruitment of participants was designed to prioritise groups with an equity focus. A mixed-method, pre–post design evaluation was conducted. Participant surveys assessed knowledge, confidence and expectations at baseline and post education. Semi-structured interviews and focus groups explored the experience of participants, mentors, and supervisors. Qualitative data were analysed using the Consolidated Framework for Implementation Research to examine implementation factors and behavioural determinants.  

Results 

Twenty-one participants (60% regionally based) supported by 11 mentors, and 19 supervisors across 10 organisations Victoria-wide, completed the pilot. Of the 18 (86%) participants that completed the post‑education survey, 15 (83%) reported increased knowledge and confidence; 13 (72%) rated themselves very/extremely confident; and 17 (94%) would recommend the program. Qualitative findings showed strengthened leadership identity and validation of lived experience as expertise. Placements were pivotal for translating learning into practice, while mentoring provided emotional and reflective support when well facilitated. Variance in organisational readiness, administrative delays, and role ambiguity were identified as barriers to sustained engagement.  

Conclusion 

Our study demonstrates lived experience as expertise, fostered through advocacy skills and leadership identity. Sustainable leadership requires organisational readiness and capability in engagement practices. With role clarity and supportive structures, people with lived experience are essential partners in driving meaningful cancer reform.