Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2024

Meaningful and effective consumer involvement in cancer care: recommendations for optimal co-design (#438)

Nicole Kiss 1 , Hannah Jongebloed 2 , Brenton J. Baguley 1 , Skye Marshall 2 , Victoria M White 3 , Trish M Livingston 2 , Kathryn Bell 4 , Leonie Young 4 , Sabe Sabesan 5 , Dayna Swiatek 6 , Anna Boltong 7 , Joanne M Britto 8 , Anna Ugalde 2
  1. Institute for Physical Activity and Nutrition, Deakin University, Burwood, Victoria, Australia
  2. Institute for Health Transformation, Deakin University, Burwood, Victoria, Australia
  3. School of Psychology, Deakin University, Burwood, Victoria, Australia
  4. Consumer representative , Clinical Oncology Society of Australia, Sydney, NSW
  5. Department of Medical Oncology, Townsville Cancer Centre, Townsville, Queensland
  6. Faculty of Health, Deakin University, Burwood, Victoria, Australia
  7. Kirby Institute, University of New South Wales, Sydney, NSW
  8. Victorian Comprehensive Cancer Centre Alliance, Parkville, Victoria

Aims

Co-design refers to active engagement with stakeholders in the development of an initiative. Although the benefits of consumer engagement in research and healthcare initiatives are known, there is a need to optimise this for all people affected by cancer. This study co-designed recommendations to guide the application of optimal co-design in oncology research, practice, and policy, underpinned by a systematic literature review.

Methods

An expert stakeholder group was formed, including consumers, senior representatives from key oncology organisations in Australia who have led national initiatives on consumer participation in healthcare, and researchers with strong consumer engagement in their research programs. Stakeholders were involved in 1) developing the review protocol, 2) reviewing a draft list of recommendations generated from the review, and 3) workshopping to explore review results and discuss draft recommendations. Workshop feedback was organised into themes to refine the recommendations followed by two further rounds of consultation with stakeholders.

Results

Themes that emerged were 1) methodological issues, including inconsistent reporting and use of frameworks, inconsistent consideration of power dynamics, and inconsistent engagement of consumers; 2) co-design participation issues, including limited rationale for the choice or diversity of consumers and other stakeholders, and limited reporting of consumer recognition such as renumeration or authorship; 3) evaluation issues, including poor reporting of evaluation of the co-design process and the co-designed initiative limiting assessment of factors influencing the effectiveness or uptake of co-designed initiatives. From these themes, nine recommendations were developed relating to co-design methodology, recruitment and engagement of consumers and other stakeholders, and evaluation of co-design initiatives.

Conclusions

Co-design is an important and increasingly used methodology for engaging people affected by cancer in the development of cancer control initiatives. The recommendations generated guide researchers, clinicians, health services, government policy makers and consumer advocacy organisations to meaningfully and robustly utilise co-design processes.