E-poster Presentation 2014 World Cancer Congress

Consumer engagement in cancer research: Development of a consumer advisory committee for researchers in Sydney, Australia (#853)

Stella Jun 1 , Carmel Quinn 1 , Lena Caruso 1 , Robyn L. Ward 1
  1. Prince of Wales Clinical School, UNSW Australia, Sydney, New South Wales, Australia

Background and Context:

The value of consumer engagement in the planning and delivery of cancer research projects is increasingly recognised by both researchers and funding bodies. In order to encourage widespread participation, many funding bodies now incorporate a score for consumer involvement when allocating grants. However, researchers who are unfamiliar with this concept can struggle to access appropriate information and resources.


The Translational Cancer Research Network (TCRN) aimed to develop a new consumer committee structure to provide a more effective, continuous research support service to its members.


The TCRN established an in-house Consumer Advisory Committee (CAC), engaging trained consumers to provide informed advice to its members. The CAC’s unique structure reduces reliance on a single individual, while allowing for 1:1 researcher-consumer relationships within the committee structure. Consequently:
• The CAC provides comprehensive, group support to researchers
• If an individual consumer is unavailable to assist with a project, continuity is maintained by other CAC members.

Programme/Policy Process:

The TCRN recruited an independent chair and 10 consumers, all with experience as cancer patients, survivors or carers. Members received training in consumer involvement in research, via the TCRN.

Outcomes/What was learned:

The CAC’s role includes:
• Influencing research plan development and direction
• Helping researchers articulate the purpose of their work and its potential impact on the broader community.
Since its launch in 2012 the CAC has:
• Provided a consumer perspective for over 20 research projects
• Engaged with 25 TCRN supported PhD students, connecting them to real-world outcomes and helping them effectively communicate their research from the earliest stages of their careers.
The TCRN CAC are increasingly recognised and utilised by TCRN members and consequently are successfully promoting the concept of consumer engagement in cancer research.