Consumer Advisory Committee at the Forefront of Research Success

Consumer input into research development is more important than ever, with major funding bodies like the NHMRC and the Cancer Council of New South Wales placing heavy emphasis on consumer contributions to applications for research funding. Facilitating strong partnerships between researchers and consumers has been the remit of the TCRN’s Consumer Advisory Committee ("CAC") since it was launched in 2012. 

The CAC exists to provide consumer expertise to support TCRN-led translational cancer research projects. It is comprised of 10 members who have all had personal experiences with cancer. Collectively, the CAC has provided input into 38 research projects, grant applications and research plans, and established 19 research partnerships.

Extending the reach of the CAC is the goal of the Consumer Engagement Workshops, which the committee hosts twice a year. According to Stella Jun, a project officer at the TCRN, these workshops educate researchers on the importance of consumer involvement in their projects.

“Two weeks before the workshop, researchers submit summaries of proposed research projects for the consumers to review, prior to writing their grant applications. At the second workshop, researchers can bring along their funding applications for further feedback,” she said.

“The advantage of attending both workshops is that researchers can demonstrate engagement with consumers regarding the planning and communication of their research before embarking on writing their grants. This is highly regarded by funding bodies as it illustrates meaningful engagement with consumers, giving opportunity for input from an early stage.”

As cancer patients, survivors and carers, members of the CAC have a unique perspective on cancer research and how its design, implementation and outcomes are likely to impact people needing treatment and care. 

“Consumers’ real life experience helps researchers improve research design and implementation and promote better communication of their research purpose and its potential impact,” Stella said.

While funding applications are an important component of the CAC’s work, they are by no means the only contribution that members make to TCRN-led research. For example, the committee has worked collectively to provide input into a new patient consent for the TCRN’s HSA Biobank consent project, and into information booklets for radiotherapy patients as part of the 2014 Cancer Challenge of the Year project. This input ranges from editing the content of documents and presentations to make them more suitable for patients and carers, or translating the patient experience of undergoing tests, treatments or follow-up care to assist researchers in understanding the needs of the end user.

Dr Nham Tran, who runs a head and neck cancer research group at UTS, is a TCRN researcher who has benefitted from a research partnership with the CAC. Dr Tran has been working in partnership with CAC member Sue Suchy since March 2014 and says that Sue’s input adds significant value to the research process.

“Most of the time as scientists, we are just in the lab and we don’t really have direct contact with the patients unless we go through our clinical collaborators, so having Sue involved has been fantastic,” Dr Tran said.

“When she came in and talked to our lab, she had a real impact on the younger students – the students who are actually doing the research who never have contact with the patients. It gives them real incentive to work toward finding a solution because there is this person standing in front of them who will benefit from their discoveries.”

Dr Tran’s research is focused on biomarkers that reveal the early presence of oral cancer, and says that understanding how patients would use his diagnostic test in real life has also been helpful in the ongoing development of his research.

“For example, if we rolled out the product, would the consumer be willing to pay for it, how would the consumer use it, what might make it user friendly – how to get patients into the doctor to have the tests done?”

For Sue, the CAC provides a unique opportunity to remind researchers that at the end of the translational pipeline, there are real people waiting for research outcomes that have the potential to transform lives.

“With cancer, it’s a specifically scary diagnosis when you get it, no matter what type of cancer. I guess my view was that consumers need to be involved in the terms of research that’s done and help shape priorities for research, but also provide a voice for patients from the beginning to the end of that cancer journey,” she said.

The next Consumer Engagement Workshop will be held 17 February 2016.

Please contact TCRN@unsw.edu.au for more information.

Visit the CAC webpage to learn more about consumer engagement.