Poster Presentation 2025 National Cancer Survivorship Conference

Insights from researchers and consumers on how to build and maintain a long-term successful researcher-consumer collaboration  (#159)

Gill Stannard 1 , Jacinta Frawley 1 , Kristin Young 1 , Amanda Warrington 1 , Caroline Ford 2 , Deborah Marsh 3 , Nikola A Bowden 4
  1. Consumer Representative, Cancer Voices, Australia
  2. Gynaecological Cancer Research Group, School of Clinical Medicine, Faculty of Medicine and Health, , University of New South Wales, Kensington, NSW, Australia
  3. Translational Oncology Group, School of Life Sciences, Faculty of Science, University of Technology Sydney, Sydney, NSW, Australia
  4. School of Medicine and Public Health, University of Newcastle and Hunter Medical Research Institute, Callaghan, NSW, Australia

In June 2020, discovery scientists and consumers began a successful collaboration on a drug repurposing program for ovarian cancer funded by the Medical Research Future Fund (MRFF). Over the past 4 years together the researcher-consumer team has moved drugs from the lab to a planned clinical trial. Team members shared their perspectives on what has made this partnership successful, with active consumer input from inception, through to drug selection and trial design; navigating the challenges inherent in recruiting a team of consumers from a community where trained consumers with lived experience of ovarian cancer are scarce, to nurturing engagement through a project spanning many years. 

There were 5 key insights both researchers and consumers described about the success of the collaboration:

Collaborative Relationships: Both consumers and researchers highlighted the genuinely collaborative nature of their relationship, with mutual respect and active engagement.

Recognition and Value: Consumers' roles are recognised as integral, with their contributions valued and respected. This recognition includes authorship on presentations and involvement in key decisions.

Diverse Contributions: The diversity of experiences and professional skills that consumers bring enriches the project, with both sides acknowledging the unique perspectives and insights this diversity provides.

Commitment to Consumer Input: Researchers' commitment to incorporating consumer feedback, with actions taken to integrate consumer suggestions into the research process.

Community and Professional Networks: Both consumers and researchers benefit from the extensive networks and community connections that consumers bring, enhancing the project's impact and reach.

The inclusive approach has fostered mutual respect between researchers and consumers, creating genuine engagement and a collaborative environment. This collaboration highlights how long-term consumer relationships can significantly shape research outcomes, empowering consumers as vital stakeholders in medical research.