February, for me, was all about cancer. Before you switch off at the ‘c’ word, for a change, it’s been an uplifting and inspiring experience.
Before I left Melbourne to live in Sydney, I had an opportune encounter with a researcher who suggested I get involved with advocacy on behalf of others with cancer. It took a few years to take this on board, and find the time and energy to become a volunteer.
Studies in this relatively new area of consumer involvement with cancer researchers have shown that the quality and content of research benefit a great deal from consumer engagement – in its direction, in its applicability to community needs, and its end value for people affected by cancer… even if it’s a mouse model, or molecular biology study, the end object will benefit from an informed consumer view. Research funders are now convinced and most require evidence that applicants for their funding have engaged in a meaningful way with informed consumers.
Cancer Voices guide for consumers
Late last year, I completed my training and officially signed up as a consumer/advocate with Cancer Voices. Consumers are usually people whose lives are affected by cancer and are interested in collaborating with researchers and clinicians. We are the voice of the people that the research impacts (rather than being the subjects of the studies). We play different roles, including giving feedback on the study design and critiquing plain English research summaries to help researchers get funding. Consumer involvement is often mandatory for (or at the least, increases the chances of) obtaining research funding.
Cancer Voices has spearheaded consumers in research in Australia and is run by a team of dedicated volunteers – many of whom have, or previously had, cancer. The organisation also collaborates with Cancer Council NSW to train those interested in advocacy and consumer involvement, through workshops and online modules.
A new role
Other than involvement on a specific study, there’s also opportunities to be part of a research organisation’s in-house Consumer Advisory Panels (CAP). We work with practitioners and scientists to help identify research priorities, and give crucial feedback while they’re still framing their proposals.
I’ve had the honour of joining the Translational Cancer Research Network (TCRN) as a CAP member. It’s a bit of a mouthful but basically it brings together researchers and clinicians from a variety of NSW universities and hospitals to help translate scientific discoveries into actual clinical policies and treatments more quickly. Reducing these delays can really make a difference for those living with cancer.
In recent months the panel has met twice to share updates about the work going on in the Network, meet new researchers and give feedback to PhD students and medical scientists about their proposed studies.
These are full but uplifting days and I always leave with my head spinning about the potential research on the horizon, and with so much hope about the future of cancer detection, prevention and treatment.
Getting my geek girl on
“You are not expected to have or to gain an in-depth understanding of the science behind the research – what’s more important is that they can explain what its impact will be.”
Cancer Voices guide for consumers
While having four years of health science education under my belt is useful, as a consumer I have to put everything I know from my studies and professional experience aside, and rely on my lived experience of cancer.
But taking on some of my new consumer roles has given me the opportunity to well and truly get my geek girl on! As well as being privy to some mind-bending research proposals as a CAP member, I’ve been invited by a number of eminent researchers to be a consumer on their studies. Gowning up for a lab visit, looking down microscopes, and learning about how RNA and DNA is extracted, well and truly thrilled my inner geek.
Ovarian cancer focus
Being a bit of a unicorn in the world ovarian cancer, through surviving more than five years, I’m committed to be an advocate for women who’ve not been as fortunate.
Understandably, a cancer with such a poor survival rate, draws on a very small pool of those well enough to share their experience and be involved long term with researchers. This has opened up more opportunities as a consumer in ovarian cancer research, than I have time to volunteer. Starting work with four different teams in the space of a couple of weeks, has kept me busy. However this is likely to decrease soon as consumer input is usually sporadic over the life of a study.
If successful, these projects will potentially save the lives of many women. But cancer research funding is incredibly tight in Australia, and a very small percentage of projects receive the grants needed to go forward. Even with funding and years of research, only a fraction ultimately succeed to be adopted as a new test, treatment or clinical strategy.
Despite the potential disappointment, I’m so excited to play a tiny role in this.
Getting involved in cancer consumer advocacy
You don’t need to have had cancer to get involved as family members, partners and others are also welcome.
I found it useful to have a period of time between my own cancer and taking on this role. For me, it was important to process this life changing experience and emotionally recover first.
Want to know more about becoming a consumer? Contact Cancer Voices, your state Cancer Council, or contact me directly if you have any questions. Or if you are a cancer researcher wanting to know more about the benefits of being a consumer or are ready to add one to your team, get in touch directly with Cancer Voices Australia.