Cancer Voices NSW has received the inaugural ‘Consumer Engagement in Cancer Research Award’, part of the 2023 NSW Premier’s Awards for Outstanding Cancer Research. (See link to the NSW Government media release below)
Cancer Voices NSW (CVN) provides the independent voice of people affected by cancer in NSW and beyond. In the twenty-three years since our formation in 2000, Cancer Voices NSW has been influential in improving cancer care, information, support and the direction of cancer-related research in NSW.
The Award was announced and presented at the awards ceremony on Monday, 13 November 2023. The Hon Ryan Park, Minister for Health and Minister for Regional Health, the Hon David Harris, Minister for Medical Research and Susan Pearce AM, Secretary, NSW Health attended the event. The Award itself was accepted by Elisabeth Kochman, Chair, Cancer Voices NSW.
The citation for the Award reads ‘’Awarded to Cancer Voices NSW, for making a significant and sustained contribution to cancer research in NSW, supporting people living with or impacted by cancer’. The basis for the recognition is the CVN ‘Consumer Involvement in Research Program’ that has been operating since 2005. The Program provides a matching service for cancer researchers to partner with a trained research consumer.
The awards process involves a nomination by somebody who knows a person or organisation involved in cancer research in NSW. CVN was nominated by Dr Anna Singleton. Anna is a Senior Research Fellow in the School of Health Sciences at the University of Sydney, and is a National Health, Medical and Research Council Emerging Leadership Fellow.
Anna uses our CIR Program to identify and work with cancer research consumers. Pleasingly, she was the recipient of the ‘Outstanding Early Career Researcher’, which was also presented at the awards event.
In accepting the award, Elisabeth indicated that CVN was honoured and grateful to be the recipients of the inaugural award, saying that it provided ‘Recognition and validation of consumers and how far we have come, and the importance and value of what we bring and contribute to shaping the research landscape.’ Elisabeth also acknowledged CVN Executive members present: Kathryn Leaney, Lillian Leigh, Sarah Lukeman and Bev Noble.
‘Cancer Voices NSW is made up of people who have benefited, are benefiting from, and will continue to be the beneficiaries of all the wonderful work and innovations of cancer researchers generally. Through the Cancer Voices NSW Consumer Involvement in Research (CIR) Program, we have been involved with researchers for nearly 20 years,’ Elisabeth continued.
In describing the history and growth of consumer involvement in cancer research, Elisabeth referred to the long, sometimes frustrating but rewarding journey of a completely voluntary organisation and its volunteers who are motivated by their individual cancer experiences. She acknowledged the vision, determination and persistence of consumers, led by the late Sally Crossing AM, who advocated for consumer involvement in research back in 2002 under the mantra of ‘Nothing about us without us’ as, for too long it hadn’t always been about us, but too often was done ‘to us’.
Elisabeth also thanked Cancer Council NSW for its willingness to partner with CVN, including in the development of training and appropriate processes and criteria for grant review panels, those members of CVN who have chosen to do the training and be involved, in some cases over many years, and who have been extraordinarily generous with their time since the program began in 2005, researchers and their organisations and universities that CVN now works with right across Australia, the funding bodies that now require mandatory inclusion of consumer involvement in funding applications and, in particular, those who have taken the reins to manage the actual process of matching researchers and consumers over the years.
In pointing to the reasons as to why people with an experience of cancer choose to become involved in cancer research, Elisabeth referred to an email that was received in June last year from a CVN member who had been an active and passionate consumer representative, and who had kindly given permission for it to be used when talking about consumer involvement:
My health has taken a turn for the worse, so I’ll no longer be able to participate.
At the end of June, I will have lived with metastatic breast cancer in my liver for five years. This timeframe seemed impossible at the beginning. It’s thanks to the work of consumer representatives, clinicians and researchers I’ve lived this long. Thanks for the privilege of doing a little bit in the huge effort to make the voices of consumers heard.
Sadly, Kim died as a result of her cancer in December last year.
Professor Tracey O’Brien, CEO of the Cancer Institute and NSW Chief Cancer Officer, in congratulating CVN on the award, has indicated that ‘working in partnership with consumers is key to our work at the Cancer Institute NSW and it’s a privilege and honour to partner with Cancer Voices NSW. Your unique insights are key to driving advancements in cancer care and research and improving the experience for people living with or impacted by cancer.’
Kathryn Leaney, Manager of the CVN CIR Program, has said that ‘Receiving the award, and being recognised for the vital role that consumers provide in cancer research, has given us great encouragement to continue and expand our activities in helping to ensure genuine consumer involvement.’
There are so many passionate and dedicated cancer researchers and health professionals in NSW and we are all working within the framework of the fifth NSW Cancer Plan. Together we can do so much more for those affected by cancer, and Cancer Voices NSW looks forward to continuing to be central to that work in the years ahead.
Link to the Cancer Institute NSW website https://www.cancer.nsw.gov.au/what-we-do/news/leading-pathologist-wins-state-s-top-cancer-resear
Link to Government media release: Leading pathologist wins state’s top cancer research prize | NSW Government