Jane wanted to give back following her cancer diagnosis in 1998.
When did you first become involved with cancer research as a consumer representative?
After I was diagnosed with cancer in 1998, I wanted to do something to give back, and Cancer Council NSW’s mission resonated strongly with me, so I commenced volunteering. During that time, I was encouraged to complete both the consumer training and consumer review courses and later was on CCNSW research committee.
What motivated you to become a consumer representative?
I was motivated for a number of reasons wanting to give back to all the incredible doctors and support I received during my cancer journey, interest to learn more about cancer and its long-term effects and with three daughters, the firm belief that, with more research, we can transform cancer into a manageable disease.
What research projects have you been involved with?
My involvement commenced with reviewing grant applications from a consumer perspective for a number of funding bodies and later on assisting researcher on specific projects. I have been involved in a number of different research projects – not all in breast cancer research. Some are basic science projects, while others are preclinical and service delivery. Currently, I am involved with cancer researchers who receive funding from both government and non-government organisations.
How have you been involved with cancer researchers?
In the early years, my involvement was mainly as a member of a Consumer Panel assessing Research Grant applications, then as a consumer on Cancer Research Committees, Scientific Committees and Advisory Panels. Over the years I have seen a shift to personalised medicine and immunotherapy in the grant applications and I feel very privileged to see what the best researchers in NSW are working on. In more recent times (the last 5-7 years), I have worked with individual researchers which is very insightful, seeing the projects develop and reviewing their grant application to ensure its consumer-friendly and easy to read.
What do you enjoy the most about being involved with a research project?
The connection with the researcher, two-way dialogue, learning, seeing young researchers build their careers, while been totally impressed by their passion, commitment and dedication to find new ways to detect, treat and cure cancer. You come away feeling uplifted and inspired.
What are some of the challenges that you have faced as a consumer representative?
Pre family, I was involved in Investment Banking so the medical terminology and acumens were a struggle to begin with, Google helped as did asking lots of questions. Over the years, the acceptance of consumer involvement in research projects and in reviewing grant applications has changed significantly, with greater knowledge and with researchers seeing the value/benefits of involving consumers in their research. Researchers are more accepting and enormously gratefully of our time plus consumers get a glimpse of researcher’s world and its struggles.
How have you been able to help your researcher with their project?
By talking over the project with David, assisted by giving the consumer or end user point of view, asking about access for all and equity to pay. Ensuring the use of lay terms/language to make the grant proposals easier to understand and all criteria are addressed.
We do this either face to face over coffee, via email and by telephone/zoom.
What do you know now that you would like to have known at the beginning of your involvement with researchers?
That researchers are so committed and research is dynamic and continually changing so don’t sweat on the things you may have trouble fully understanding and you are new to this; be kind to yourself and there’s no such thing as a bad or silly questions, all questions are good.
If you could say one thing to a new consumer representative, what would it be?
That your experience and insights as a consumer representative are invaluable. The work is very important, interesting and enormously rewarding, you get to read and be involved with the best researchers. Remember it’s a partnership and both the researcher and you are learning together. Ask for an overview of the application prior to your informal catchup either by zoom or face to face, that way its gives time to have a think about the project and jot down any questions you may have.
Is there anything else you would like to add?
Enjoy the process, it’s very fulfilling and researchers are great people.