Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2026

Community members as research partners: A scoping review of consumer training programs in cancer research (146210)

Lizzy Johnston 1 2 3 , Alyssa Taglieri-Sclocchi 1 , Rachael Madders 1 4 , Anna Stiller 1 , Leah Zajdlewicz 1 , Sini Skariah 5 , Susannah Ayre 1 3 , Xanthia Bourdaniotis 1 6 , Renee Clapham 7 , Rachel Hebbard 7 , Susan Hayes 8 , Anna Nankivell 9 , Julia Morris 5
  1. Viertel Cancer Research Centre, Cancer Council Queensland, Brisbane, Queensland, Australia
  2. School of Nursing and Midwifery, University of Southern Queensland, Toowoomba, Queensland, Australia
  3. School of Exercise and Nutrition Sciences, Queensland University of Technology, Kelvin Grove, QLD, Australia
  4. Lung Foundation Australia, Milton, Queensland, Australia
  5. Cancer Council South Australia, Eastwood, South Australia, Australia
  6. School of Psychology, University of Queensland, St Lucia, Queensland, Australia
  7. Cancer Council Victoria, East Melbourne, Victoria, Australia
  8. Consumer Representative, WA, Western Australia, Australia
  9. Cancer Council Western Australia, Subiaco, Western Australia, Australia

Aims: Partnering with community members with lived experience (‘consumers’) is essential for conducting cancer research that is relevant, meaningful, and equitable for those it aims to benefit. Training to support consumers as cancer research partners is recommended, yet no guidance exists to inform the design of these programs. This review sought to identify best practice for developing consumer training for cancer research.

Methods: A scoping review of peer-reviewed and grey literature was conducted using PRISMA-ScR guidelines. Eligible programs included training (i.e., structured and organised activities to develop or enhance knowledge, skills, and competencies) for community members (not healthcare professionals or students) to participate as research team members or reviewers. Programs had to be fully developed and published in English from 2015 onwards.

Results: Twelve unique training programs were identified from the United States (N=6), Denmark (N=3), Australia (N=2), and Sweden (N=1). Australian programs covered consumer involvement principles, ethics and funding processes, and study designs. International programs included broader topics (e.g., cancer biology and biopsychosocial impacts (N=2), social determinants of health (N=2), community-based participatory methods (N=2), implementation science (N=1), interview techniques (N=2), data analysis (N=2)). Delivery mode was reported for six programs (N=2 online, N=1 in-person, N=3 hybrid). Time commitment was equivalent to ≤1 day for most programs (N=9). Australian programs were free to access, with fees not reported for programs elsewhere. Few reported consumer involvement in program development (N=3). Several programs were developed using theoretical frameworks for participatory research and experiential learning (N=4). No programs reported development and delivery costs. Evaluation was limited, mostly addressing program completions (N=8), change in knowledge (N=3), satisfaction (N=2), and session attendance (N=1). 

Conclusions: Globally, several training programs exist to support consumers participating as research partners in cancer research. However, few programs have been designed with consumers or evaluated for their accessibility, benefit, and outcomes.