Aims
To review the establishment, development and achievements of the independent cancer consumer advocacy movement in Australia which has reached its twenty-first year milestone. A hallmark of the movement has been sharing with the “cancer world” the common goal of working in the interests of improving things for people affected by cancer. We will explore how this has been done through becoming able to contribute the “essential perspective” of the consumer experience to the decision-making mix.
Methods
Our presentation will outline the development of the movement since its inception in Victoria in 1994. We explore the reasons for its coming into existence, its common aims and the key players. We look at how they went about building the capacity of the independent cancer consumer voice, both for specific cancers and generically, and acquiring a respected profile and presence in matters of importance to people affected by cancer. We will also examine the movement’s expansion, achievements and consider priorities for the future.
Conclusion
Cancer is a major health priority for Australia and Australians. It is now the single greatest cause of death and sees 120,000 new diagnoses each year, with some hundreds of thousand living with it. It is now accepted as necessary that the voice of those affected by cancer be heard by decision-makers to improve the cancer experience for Australians, their families and friends, especially in the areas of diagnosis, information, treatment, research, support, care, survivorship and policy. This has been the goal and the achievement of the Australian cancer consumer movement, which this year celebrates its twenty-first year of successful advocacy based on “nothing about us without us”.