People affected by cancer join the conversation

In 2008, Anna was diagnosed with a type of blood cancer called Polycythemia Vera (PV), a Myeloproliferative Neoplasm (MPN) – it’s rare, chronic and incurable.

But that hasn’t stopped Anna from effecting real change for her community.

“I consciously focus on the positivity of advocacy, fundraising and volunteering, which empowers me with courage, optimism and determination,” said Anna.

“It is a privilege to contribute to cancer research, prevention and support to improve the lives of Australians,” Anna continued. 

Anna joined the Cancer Council Victoria Community Advisory Network (CAN) – a group of over 140 volunteers affected by cancer, who share their experience and contribute to our work to improve outcomes in cancer research, prevention, and supportive care. 

Through CAN, Anna was invited to collaborate with Dr Nikki McCaffrey, a Senior Research Fellow at Deakin University, and contribute to her research proposal aiming to reduce the burden, and improve the quality of life, of people living with cancer.

The experience for both Anna and Nikki has been overwhelmingly positive. CAN enabled Anna to continue her advocacy and ensured there was community representation in the design of Nikki’s research. It also contributed to the increasing practice of incorporating real life experiences into ways we address cancer.

“Consumer engagement in cancer research is invaluable – ensuring Australians affected by cancer are at the centre of future decisions and policy planning; guiding funding, healthcare service delivery; and the research, support and prevention of cancer,” continued Anna.

For Nikki, integrating this valuable new perspective underscored the aims and outcomes of her research proposal.

“Anna helped me clarify the importance of the research, why it matters to the community, ways to communicate how the work addresses the community’s needs and dissemination strategies,” said Nikki. “It’s been an extremely positive experience for me.”

Dr Nikki McCaffrey has been working with Cancer Council Victoria since 2017.

Engagement with people affected by cancer is an especially critical part of delivering best cancer care post-pandemic. For Cancer Council Victoria’s Head of Strategy and Support, Danielle Spence, CAN provides a vital platform to involve people with a lived experience of cancer in decisions related to prevention, research, treatment and care.

“Through our Community Advisory Network, Cancer Council helped elevate the patient voice in working groups to affect outcomes on important issues involving palliative care, hospital visitor guidelines, telehealth and information needs,” explained Danielle.  

“It’s great to see the recognition from government, researchers and the healthcare sector over the last few years to incorporate the community voice in the delivery of best practice cancer care,” she continued.

And for community members affected by cancer who may be thinking about joining CAN, Anna has some simple advice – go slow and enjoy the process.

“Be involved when and how it suits you and your health. Don’t overcommit or feel compelled to participate in every project. Participating is voluntary and Cancer Council is unceasingly grateful and respectful for the contributions of consumer representatives,” explained Anna.

Cancer Council is working to improve cancer outcomes for all Victorians. Members of CAN are able to contribute in several ways including sharing their story, informing research, speaking at events, conducting media interviews or joining committees and workshops that advise our work.