Data collection underway in First Nations-led cancer study

12 July 2023

A first of its kind study exploring cancer in Indigenous Australian communities has begun data collection.

The Kulay Kalingka study led by The Australian National University (ANU) will gather information about First Nations' experiences of cancer where no data currently exists.

Launched at Wiradjuri Condobolin Corporation in Condobolin NSW, it will fill important gaps in understanding experiences of cancer - the fourth leading cause of burden of disease for Aboriginal and Torres Strait Islander people.

"The Kulay Kalingka cancer study arose from Aboriginal and Torres Strait Islander community needs, to better understand cancer attitudes, beliefs and experiences and from calls for the inclusion of First Nations patients, families and communities in cancer research," Professor Ray Lovett from ANU said.

"The study has been designed by the Aboriginal and Torres Strait Islander community over two years. Community partners have raised access to appropriate information and screening along with culturally appropriate treatment as important to achieving health equity."

Funded by the Australian Government, through Cancer Australia, it's the first cancer study designed, governed and controlled by Aboriginal and Torres Strait Islander people.

The study is being led by the Aboriginal and Torres Strait Islander research team at the ANU National Centre for Aboriginal and Torres Strait Islander Wellbeing Research.

While Australia's cancer survival rates are among the best in the world, Aboriginal and Torres Strait Islander people experience higher incidence and cancer mortality rates, and lower participation rates in bowel, breast, and cervical cancer population screening programs.

The collection of up to 3,000 stories told by Aboriginal and Torres Strait Islander peoples as part of this study will provide the evidence needed to inform the Government's policies, programs and services to improve cancer outcomes.

"The Australian Government welcomes the next stage of the Kulay Kalingka cancer study as an important addition in our efforts address cancer control for all Australians," Senator the Hon Malarndirri McCarthy, Assistant Minister for Indigenous Health said.

"Improving the health of our First Nations people and Closing the Gap is a national priority, including understanding and improving cancer outcomes in the cities, towns and the bush.

"For the first time, across Australia, Aboriginal and Torres Strait Islander people will be asked about their cancer beliefs and attitudes, experiences, engagement with cancer screening programs, cancer treatment, cancer diagnosis, and caring responsibilities."

The results of the study will inform the implementation of the soon to be released Australian Cancer Plan.

"Achieving equity in cancer outcomes for Aboriginal and Torres Strait Islander people is the most significant ambition of the soon to be released Australian Cancer Plan," Professor Dorothy Keefe, CEO of Cancer Australia said.

"The plan emphasises Aboriginal and Torres Strait Islander peoples' leadership and co-design in policies, programs, and services.

"It is essential that data about attitudes, beliefs and experiences of cancer be developed by and for Aboriginal and Torres Strait Islander people."

Further information about the study is available at https://kulaykalingkastudy.com.au/.