Oral Presentation 2025 Joint Meeting of the COSA ASM and IPOS Congress

Strengthening Consumer-Researcher Partnerships: Building Capability for Meaningful Engagement in Cancer Research    (126544)

Amanda Winiata 1 , Sarah Dwyer 1 , Joy Wolfram 2 , Raluca Ghebosu 2 , Ashley Demond 3 , Benedette Watson 4 , Erik (Rik) Thompson 5 , Fernando Souza-Fonesca-Guimaraes 6 , Jo Maxwell 7 , Leonie Young 8 , Merran Williams 9 , Siobhan Dunne 1
  1. Breast Cancer Network Australia, Camberwell, VIC, Australia
  2. Australian Institute for Bioengineering and Nanotechnology, University of Queensland, Brisbane, QLD, Australia
  3. Breast Cancer Consumer, Houston, United States
  4. Translational Research Institute, Brisbane, QLD, Australia
  5. Faculty of Health, Queensland University of Technology, Woolloongabba, QLD, Australia
  6. Faculty of Medicine, University of Queensland, Woolloongabba, QLD , Australia
  7. Faculty of Health, Medicine and Behavioural Sciences,, University of Queensland, Herston, QLD, Australia
  8. Breast Cancer Consumer, Brisbane, QLD , Australia
  9. Breast Cancer Consumer, Buderim, QLD, Australia

Background: 

Consumer engagement is increasingly recognised as essential in shaping research priorities, funding decisions, and outcomes that reflect consumer needs. While co-design and inclusive practices are promoted as best practice, meaningful engagement remains challenging due to skill and knowledge gaps among both consumers and researchers. Targeted training is critical to building capability and fostering effective partnerships that can drive improvements in cancer care. 

 

Objectives / Aims: 

  • Enhance skills and confidence of consumers and researchers for meaningful engagement 
  • Strengthen relationships between consumers, cancer organisations, researchers and healthcare professionals 
  • Generate evidence on the impact of consumer-researcher upskilling to support sustainable capacity-building initiatives  

 

Description / Methodology: 

Two in-person workshops were co-designed in October 2024 and March 2025. Each included presentations, discussions, and interactive. Participants included individuals with lived experience, researchers, and representatives from non-profit organisations. Evaluations involved pre- and post-surveys capturing qualitative and quantitative feedback, with ethics approval obtained.  

 

Results / Outcomes: 

  • 142 individuals attended both workshops, all reported gaining valuable insights, knowledge and skills.   
  • 100% gained new knowledge of consumer-research collaboration (UQ) 
  • 29% and 24% increase in understanding of how to collaborate with consumers and confidence in doing so, respectively (UQ) 
  • 100% are likely to attend another workshop and recommend it to others (BCNA)  
  • 73% of consumers had previously attended similar workshops compared to only 30% of researchers (BCNA) 
  • 91% felt the workshop met or exceeded their expectations (combined) 

 

Discussion: 

Workshops demonstrated that training enhances engagement capability. Prior experience played a role, influencing participants’ baseline and perceptions. Strategic collaboration between consumer organisations and research institutions provide opportunities to reduce duplication, address training gaps, and strengthen national leadership. A six-month follow-up evaluation of the BCNA workshop will offer valuable evidence on the lasting impact of short-term training.