Cancer is the second commonest cause of death for Aboriginal people in NSW, but is rarely mentioned as a health priority for Aboriginal people. Very little is known about cancer in Aboriginal people in Australia and what is known relates to Aboriginal people living in the remotest parts of the country, predominately the Northern Territory and Western Australia. New South Wales (NSW) has the largest population of Aboriginal people and the largest population living in urban areas.
Cancer Council NSW is addressing this large gap in knowledge and is aiming to improve the health of Aboriginal people. Our current research found that the overall mortality from cancer in Aboriginal people is 60% higher than that of non-Aboriginal people. However for some specific cancer sites the mortality rates are more than three (3) times that of non-Aboriginal people.
Study personnel
Aims of the study
Information about study protocol
Study news
Contact us
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Study personnel
Rajah Supramaniam
Cancer Epidemiology Research Unit, Cancer Council NSW
Professor Dianne O'Connell
Cancer Epidemiology Research Unit, Cancer Council NSW
Ms Jenny Rodger
Research Assistant, Cancer Epidemiology Research Unit, Cancer Council NSW
Ms Veronica Saunders
Aboriginal Community Liaison Officer, Cancer Epidemiology Research Unit, Cancer Council NSW
John Dennis
Data Collection Officer , Cancer Epidemiology Research Unit, Cancer Council NSW
Aims of the study
We are particularly interested in understanding and addressing the increased mortality due to cancer and determining whether the cause of this excess mortality is late diagnosis or differences in treatment or a combination of the two. The study will describe barriers to early diagnosis and access to cancer care. Results will be disseminated to policy makers and heath professionals to enable Aboriginal people to have greater control and be more involved about making decisions in their healthcare and treatment.
Study protocol
This study is funded by the National Health and Medical Research Council Health Services Research Program for 5 years. The study has been approved by the ethics committees of the Cancer Council NSW, The University of NSW and the Aboriginal Health and Medical Research Council. This study has four phases:
Phase one
The first stage involved data linkage from the NSW Cancer Registry with all inpatient records from NSW hospitals. This descriptive epidemiological work showed that the overall mortality from cancer in Aboriginal people is 60% higher than that of non-Aboriginal people and that Aboriginal people had lower rates of surgical treatment for their cancers compared to non-Aboriginal people in NSW.
Phase Two has two parts:
A Patterns of Care Study is being conducted from the Cancer Council. Treatment information from medical records will be extracted from 400 Aboriginal patients and their patterns of care will be analysed to determine if it was different to the general population.
Qualitative Interviews about an Aboriginal person’s cancer journey, this will be managed by the National Centre in HIV Research at The University of NSW (UNSW). In-depth interviews will be conducted with 50 Aboriginal people with cancer, 30 carers of Aboriginal people with cancer and 30 health care workers who work with Aboriginal people. The aim is to explore and understand Aboriginal people’s cancer journey using culturally appropriate research tools.
Phase Three
A Pathways to Diagnosis Study for Aboriginal people with cancer, examining the barriers to Aboriginal people being diagnosed at an earlier stage of their disease.
Phase Four
The Dissemination of key findings to and consultation with key stakeholders to improve cancer care and diagnosis for Aboriginal people in NSW.
Study news
Phase one of the study has been completed and results have been presented in conferences and to other stakeholder groups and will be published in the near future.
We are now in phase two of the study. For the qualitative arm the UNSW team is currently recruiting and training Aboriginal interviewers. Pilot interviews have been completed and the key barriers to optimal cancer care for Aboriginal people that have emerged are feelings of isolation, lack of support, difficulties with transport to treatment, communication difficulties with medical staff and viewing cancer as a very fearful disease. For the Patterns of Care study, the Cancer Council team is partnering with hospitals and Aboriginal Medical Services throughout NSW to undertake this study beginning in 2009.
Phases three and four will take place in 2010-2011.
Contact us
For further information, please email us at apocc@nswcc.org.au
or 1 800 247 029 (freecall) to speak to our Aboriginal Community Liaison Officer.
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