Cancer Voices: The importance of consumers in research
We talk to Lee Hunt, Executive Member of Cancer Voices NSW about the impact consumers can have in the cancer research space.
Having been diagnosed with an aggressive Grade 3 breast cancer at the age of 53, Lee Hunt understands first-hand what a cancer diagnosis means.
‘What many people don’t know is that the cancer journey doesn’t stop when the treatment finishes,’ she explains. ‘The side effects of treatment can be long-term and harrowing, and often don’t show up until years later.’
Lee required aggressive chemotherapy in order to improve her outcome, which left her with serious toxicity throughout her body. She also had to undergo radiotherapy, causing burns to her skin and oesophagus which have forced her to drastically modify her diet.
In addition, Lee had to fund over $50,000 worth of medication herself, meaning she was unable to give up work throughout the gruelling treatment. Since then, she has undergone $22,000 worth of dentistry to replace lost tooth enamel as a result of chemotherapy.
Despite all this, Lee hasn’t lost her sense of humour; ‘The main thing is, I’m still here…and because I paid for everything on my credit card, I managed to get a free holiday to Italy out of it all!’ she laughs.
Nevertheless, it is this personal journey that prompted her to look for ways to connect with and advocate for others who had been through similar experiences.
Enter, Cancer Voices
Established in 2000 by Sally Crossing, Cancer Voices is a volunteer organisation that provides a voice for people affected by cancer.
‘Cancer Voices aims to improve the cancer experience for any Australian affected by cancer,’ explains Lees, who leads and coordinates the Cancer Voices Consumers in Research program for News South Wales and Victoria. ‘We exist to promote improved access for those who have experienced cancer. As consumers, their perspective is crucial.’
Lee’s role is to partner consumers with relevant researchers so they can provide a personal perspective into what research is most needed.
‘Because we’ve been on the journey ourselves, we can help researchers develop questions that reflect the needs and issues faced by real people. We can then promote and publicise findings to the wider community, which leads to improved understanding and support of research, and opens up the possibility of more funding in areas which have greatest end-user impact.’
Consumers and Cure Cancer Australia
The importance of consumers in research is something that Cure Cancer Australia also champions. As part of the Cure Cancer Australia grant process, all applications must pass through a consumer panel for consideration before any grants are awarded.
In addition, we ensure our researchers are continually exposed to ‘real people’ through Can Too Training Pod programs, showcases and community focused activities throughout the year.
‘We always say that we need to work together to beat cancer because we genuinely believe that.’ says Nikki Kinloch, Cure Cancer Australia CEO. ‘Raising money to fund our grants is crucial to our organisation, but it’s also important to have a variety of different perspectives - particularly those of people who have experienced cancer first hand - when considering our grant recipients.’
‘Organisations like Cancer Voices give real people an opportunity to be involved in the research process, and our researchers find their input invaluable. By involving the consumer, we can support innovative research that truly makes a difference.’
If you’d like to find out more about Cancer Voices and how you can be involved, head to their website: www.cancervoices.org.au