Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2026

Co-design and collaboration: Elevating the voices of adolescents and young adults with cancer through multistakeholder ownership of a national study on experiences of cancer care (146055)

Fiona E.J. McDonald 1 2 , Andrew Murnane 3 , Jack Conroy 4 , Ruby D'Rozario 5 , Phoebe Heard 6 , Claire Josefsson 7 , Morgan Atkinson 8 , Megan Baiocchi 2 , Joanna Fardell 9 10 11 , Lyndal Moore 12 , Michael P Osborn 8 13 14 15 , Louise Reynolds 2 , Ursula M Sansom-Daly 9 16 , Kate Thompson 3 17
  1. Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia
  2. Canteen Australia, Sydney, NSW, Australia
  3. Victorian Adolescent & Young Adult Cancer Service, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia
  4. WA YCS Youth Advisory Group, Perth, WA, Australia
  5. NSW/ACT YCS Youth Advisory Group, Sydney, NSW, Australia
  6. QLD YCS Youth Advisory Group, Brisbane, QLD, Australia
  7. VIC/TAS YCS Youth Advisory Group, Melbourne, VIC, Australia
  8. SA/NT Youth Cancer Service, Adelaide, SA, Australia
  9. Behavioural Sciences Unit, School of Clinical Medicine, UNSW Medicine & Health, Randwick Clinical Campus, Discipline of Paediatrics & Child Health, UNSW, Sydney, NSW, Australia
  10. Western Sydney Youth Cancer Services, Crown Princess Mary Cance Centre, Westmead Hospital, Sydney, NSW, Australia
  11. Maridulu Budyari Gumal (SPHERE) Cancer Clinical Academic Group, Medicine & Health, School of Clinical Medicine, UNSW, Sydney, NSW, Australia
  12. Hunter & Northen NSW Youth Cancer Service, Newcastle, NSW, Australia
  13. Department of Haematology/ Oncology, Women’s and Children’s Hospital, Adelaide, SA, Australia
  14. Discipline of Paediatrics, Adelaide Medical School, Adelaide University, Adelaide, SA, Australia
  15. South Australian Comprehensive Cancer Network, Commission on Excellence and Innovation in Health, SA Health, Adelaide, SA, Australia
  16. Minderoo Children's Comprehensive Cancer Centre, Sydney Children’s Hospital Randwick, Sydney, NSW, Australia
  17. School of Medicine, Dentistry & Health Services, University of Melbourne, Melbourne, NSW, Australia

Background/Aims
The Australian Optimal Care Pathway (OCP) for adolescents and young adults (AYA) outlines the key components of high-quality cancer care. To understand whether these elements are experienced as intended, research must capture the perspectives of AYA in ways that reflect their priorities and lived experience.  This paper describes the collaborative development of a national AYA experiences of care survey comparing self-reported care experiences with prioritised aspects of the AYA OCP. Given ongoing challenges in AYA oncology research, participation and engagement, it also examines how shared ownership can be embedded to elevate AYA voices and support meaningful partnership in study design.  

Methods
The study is being developed through a national co-design approach involving researchers, multidisciplinary healthcare professionals (n=15) and AYA cancer survivors (n=5), via a steering committee, five working groups and a core project team. Learning from previous national AYA initiatives, study development was intentionally designed to promote meaningful engagement and shared ownership across all research stages. Stakeholders contribute to development of research questions, prioritisation of OCP domains, study materials, recruitment, implementation and dissemination approaches.

Results
The co-design approach has fostered shared ownership of the study. Integrating diverse perspectives throughout study development informed the selection of priority OCP domains, refinement of study materials, and development of recruitment and implementation strategies. Doing so has identified opportunities to strengthen study relevance, inclusivity and AYA engagement, while ensuring the findings can be utilised by services.  

Conclusions
Meaningful partnership with AYA and services is critical to understanding whether care is experienced in line with intentions of the AYA Optimal Care Pathway. Experiences from co-designing this national study demonstrate how AYA and service provider voices can be embedded throughout study development, highlighting opportunities to promote shared ownership and strengthen the relevance and inclusivity of future experience of care research.