The involvement of consumers in cancer services in Australia over the past few decades has already had a significant impact on all aspects of cancer control. But there is far more work to be done and involved consumers are usually in short supply!
Because consumers bring a unique view to health services and organisations, there is potential for you to contribute immediately. Whether you are involved in a committee, attend consultations, help design a research study or fill in a survey, you will be making a contribution to the planning and evaluation of services.
You will join a vibrant consumer movement in Australia and will receive support from other consumers and the organisations that need your expertise and experience.
Read about how consumers make a difference to one health professional:
‘[We try] to get consumers involved right at the beginning, right at the development of ideas... So you are not just paying lip-service to it, but actually getting them involved.
A good example would be a highly complex study, funded by the National Breast Cancer Foundation study called the EMPathy study, which is a $5 million dollar piece of research collaborative around the country looking at on how breast cancer is spread, looking at this really complex scientific thing. And despite the difficulties of this being highly technical, right from the beginning, we got a patient with advanced breast cancer to be there. And she came to every meeting and often she would say, “Oh, I don’t know if I can contribute.” But she always did contribute and she always brought it back to what was important.
It keeps you honest…You have to actually have consumers as part of the study team. Their names go on the grant. Their names go on the papers that are written. And they are actually part of the study team, rather than a kind of separate advisory team that get fed a little bit of information and then they feed some back.’
−Christobel Saunders, Deputy Head, University of Western Australia School of Surgery
Are there any benefits for me?
Many consumers get involved in health services or health organisations as a way of ‘giving back’ to those who have helped them. Others do it to improve services. Still others may get involved because of a negative experience that they don’t want to see repeated with anybody else. There can be enormous satisfaction in making a difference to something very important like quality health care.
While you should be reimbursed for any out-of-pocket expenses, most of your work as an involved consumer in health care will be voluntary. Getting involved is also unlikely to mean immediate changes in your own or your family’s health care, though hopefully there will be noticeable improvements for everyone in the medium to long term.
Read about the benefits from another consumer
‘It’s been very valuable to me as an individual, even just through my own cancer experience because I’ve been much better informed… And I think for me it offered a sense of individual power over my disease. It’s also provided me with a really challenging, stimulating environment. And it’s brought up a whole lot of stuff in me that I didn’t know I had: the ability to carry an argument, the ability to speak strongly and to be a respected voice, and to be able to influence an agenda. Just from that personal perspective it’s been extremely challenging, stimulating and rewarding for me.’
—Lyn Swinburne, consumer, Founding CEO Breast Cancer Network Australia