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07 Oct 2019
10-October 2019

Consumer contribution vital to improved cancer health outcomes

  • Walter and Eliza Hall Institute
  • Victorian Comprehensive Cancer Centre
  • Peter MacCallum Cancer Centre

Jo Cockwill, a member of the VCCC Cancer Consumer Advisory Committee (CCAC) presented a poster at the Australian Clinical Trials Alliance (ACTA) International Clinical Trials Conference in Sydney last week.

The poster: Investigator-Initiated Trials Development Panel: a consumer perspective is the result of months of involvement with the VCCC Investigator-Initiated Trial Capacity Building program that aims to build capacity and quality of researchers and is one of the 19 programs that make up the current VCCC Strategic Research Plan. Jo (pictured with fellow committee member Katya Gray) shares how she became involved.

“I was a member of the Peter MacCallum Cancer Centre Consumer Advisory Committee for six years and during that time the VCCC alliance was created. I became one of the Peter Mac and now the Walter and Eliza Hall Institute consumer representatives on the VCCC Cancer Consumer Advisory Committee. I try to strengthen the VCCC consumer partnership through effective two -way communication.

“I expressed interest in being a consumer participant in the Investigator-Initiated Trials program because I believe there is a huge need to increase participation in clinical trials in Victoria and beyond if the health outcomes for cancer patients are to improve. Providing resources and support to help investigators open and conduct clinical trials builds the capacity and experience of our own talented investigators and increases collaboration with global research teams.

Equal role in trial voting selection

“My role on the VCCC Investigator-Initiated Trial Development Panel was to participate equally in the trial voting selection process to determine which of the many applications would receive VCCC assistance and to determine the nature of that support. The votes were cast and collated before the panel met. A summary of the trial, discussion and an opportunity to adjust votes followed at the meeting before the sharing of individual votes. Whilst the detail of the science was not always clear to me, my concern was with the quality of life aspects, time to translation, ease of recruitment, long term benefits to patients and need in the cancer community from a consumer perspective. My role on the Steering Committee, which ratified the selected trials, was to provide an assurance of transparency and accountability.

“The consumer researcher partnership cannot be underestimated in what it can achieve long term for improved cancer health outcomes for the community.”

“Getting these new initiatives off the ground naturally means that there are challenges to be overcome. Establishing a shared understanding of the consumer role on a crucial trial selection process is not easy. Acceptance of the importance of a community perspective is critical if the consumer is to be confident enough to contribute to discussion effectively. The time commitment, workload and meeting deadlines can also present challenges for all involved.

Opinion heard and vote valued

“During the process I felt included as a relevant member of the panel and my opinion was heard and my vote valued. The experience was a huge learning curve for me personally and I hope that my contribution provided an overall reminder of how critical and how valued cancer research is to the community as a whole.

“The consumer researcher partnership cannot be underestimated in what it can achieve long term for improved cancer health outcomes for the community.”

Registrations are now open for the VCCC Consumer Engagement Forum 2019 to be held 4 December at Woodward Conference Centre, University of Melbourne. The meeting will bring together consumers, as well as those who work with consumers across the Victorian cancer sector. A range of resources will be introduced to help implement meaningful engagement.