Aims
Cancer Voices NSW, the independent volunteer voice of people affected by cancer in our state, is proud of its ground-breaking achievements in this field. Our aim is to provide a brief overview and record from first advocacy steps towards what is now a well-developed program of consumer involvement and engagement in cancer research – a first of its kind in Australia. This is a useful model to share with other states, and indeed nationally.
Methods
Our presentation will discuss the substantial evidence and growing acceptance that research efforts are more effective and relevant when consumers are involved in selecting research questions, providing the informed consumer view to studies and assisting in funding decisions. A number of funders now require evidence within grant proposals that effective consumer engagement has taken place.
Utilising Cancer Voices access to informed consumer view, we developed a highly workable Consumer Involvement in Research(CIR) Program, with the assistance of an interested and willing partner and major research funder, the Cancer Council NSW. The development of this program over ten years (2005-2015) and its components are explored. They include training for interested consumers, identifying their priorities for research, implementing a successful electronic service to link researchers with trained consumers and various forms of consumer review.
Conclusion
A number of government agencies, cancer charities and research institutions have adopted the main elements of consumer involvement and review in research. Most incorporate training based on that developed between Cancer Voices and Cancer Council CNSW.
Cancer Voices see value in sharing this successful model, about which four peer reviewed journal papers have been published. This is an excellent example of consumers, those people affected by cancer, partnering with an organisation which could turn its proposals into reality. More importantly it has shown that the involvement of consumers in research does make a valuable difference, and has become well accepted by funders and researchers alike.