Mara became a consumer representative in 2015
When did you first become involved with cancer research as a consumer representative?
I think around 2015 or so.
What motivated you to become a consumer representative?
During the time that I was going through the breast cancer treatment process, I was impressed with the support services available – eg all the information and documents on the BCNA website, and simple things like the “Look Good, Feel Better” program. So, when the opportunity arose to participate in a Consumer Panel, I thought it would be good to be involved, and an opportunity to give back to this community. Sounds a bit corny, but nonetheless true.!
How have you been involved with cancer researchers?
Over the years, my involvement has primarily been as a member of a Consumer Panel assessing Research Grant applications. I have been doing this for some years now for both Breast Cancer Network Australia and Cancer Council NSW and continue to be impressed by the innovative and, in some cases, ground breaking proposals that are being worked on. I have also participated as a nominated consumer in a couple of research projects, helping the research team (especially the junior researchers) to be less jargon-oriented and more consumer friendly in their approach where appropriate.
I have also volunteered for the Cancer Connect phone helpline, which I found personally very rewarding, being a support for someone experiencing similar issues to myself when I was going through treatment.
What are some of the challenges that you have faced as a consumer representative?
I’ve noticed significant change in the past 8 or so years in the research community understanding the consumer perspective – however, education is an ongoing challenge, and there are still those who pay lip service to the concept. Cultural change takes time!
How have you been able to help your researcher with their project?
I‘ve worked with Tatyana in reading and reviewing her research applications, ensuring that the reviewing criteria are met as closely as possible. Also, via phone calls and personal meetings to discuss research progress. And finally, to jointly determine appropriate means/opportunities within the various cancer organisations to disseminate research findings.
If you could say one thing to a new consumer representative, what would it be?
Please volunteer for this exciting and important work – and don’t be scared of the scientific jargon. The training, information and guidelines we have been given make this quite doable.