The health consumer in New South Wales
What is a health consumer and why should a health consumer be involved in decision making process about his or her health?
by Mr John Stubbs
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A health consumer is a person who uses the knowledge and experience they gained through treatment to advance the delivery of health outcomes for cancer patients.
A consumer contributes in a unique way to many health care discussions. They have a different focus – they have seen the health care system from the inside and have often been exposed to more medical teams than the average doctor! They may have dealt with the GP, the cancer surgeons, medical oncologists or haematologists, radiation oncologists and specialist cancer nurses in an array of settings from the chemotherapy suite to the radiation and theatre suites.
A consumer will often point out the ‘obvious’ when everyone else is looking at the bigger picture.
A Consumer Focus Collaboration in 1998 stated:
“The process of involving health consumers in decision-making about their own health care, health service planning, policy development, setting priorities and addressing quality issues in the delivery of health services cannot be overlooked. They have walked the walk.”
This remains the health consumer mantra and has been adopted by all levels of government in this country.
From the outset, the Cancer Institute has involved NSW consumers in its work. Following a brief ‘honeymoon’ period and discussion with the management team, consumers have gained the confidence of the Institute and now serve on various bodies and committees, providing advice at one off consultation meetings, developing, attending and having a role in focus groups, or appointment to steering committees and advisory/reference groups for fixed term projects. This relationship continues to help shape cancer policy in NSW.
Consumer representatives may be appointed by a consumer organisation or in their own right but bring skills and expertise to the body that complements that of other members as well as ensuring diversity of input.
To complement this, the Institute has shown leadership by establishing Memoranda of Understanding with consumer groups in this state and providing funds for ongoing administration. In addition, for the past three years, the Institute has maintained two consumer appointments to its Board.
This is to be applauded.
As a consumer advocate, I am reminded of the words by Susan Sontag from her book, Illness as Metaphor
“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
Being an active health consumer in this state is a means of shaping health policy in NSW. It is about providing your story, about collaboration and identifying and raising issues that affect not only you but the thousands of people whose lives are affected by cancer in this state each year. We have and continue to make a difference!
About the author: Mr John Stubbs, BA Dip Acct
Mr Stubbs is the Executive Officer of Cancer Voices Australia and Manager of the NSW Bone Marrow Transplant Network. Mr Stubbs is a survivor of Leukaemia and an active representative of cancer consumers.
He has served on the ANZ Clinical Trials Advisory Committee, the Radiation Oncology Jurisdictional Implementation Group (ROJIG) and the Therapeutic Goods Committee under the Department of Health and Ageing and the Australian Leukaemia Lymphoma Group Clinical Trials Data Monitoring Committee. He has also served on the Complementary Therapies Committee of the Cancer Institute NSW.
