Kulay Kalingka Study

The Kulay Kalingka Study will monitor and inform improvements in cancer outcomes for Aboriginal and Torres Strait Islander peoples against Cancer Australia’s National Cancer Control Indicators.

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Yardhura Walani

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Communications Officer - Arushi Ganguly

arushi.ganguly@anu.edu.au

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About

The Kulay Kalingka Study is a national cohort study aiming to understand Aboriginal and Torres Strait Islander people’s beliefs and attitudes about cancer, engagement with cancer screening programs, and experiences with cancer diagnosis, care and treatment, to improve experiences and outcomes.

The Kulay Kalingka 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 Aboriginal and Torres Strait Islander patients, families and communities in cancer research.

Kulay Kalingka translates to “net bag in the water” in Ngiyampaa (Wongaibon) language. Woven net bags have been used by rainforest Bama (peoples) to process highly toxic foods, whereby foods are placed in net bags and run through a slow-moving stream to leach out their toxins and make them safe over time.

This concept is woven into the Kulay Kalingka Study: the net bag is symbolic of how people and families fighting cancer can include Aboriginal and Torres Strait Islander health and wellbeing concepts for cultural, medicinal and spiritual healing, alongside clinical treatments.

Addressing the gap in cancer research

Between 2015 and 2019, cancer and other neoplasms were the leading cause of death for Aboriginal and Torres Strait Islander peoples. The most commonly diagnosed cancers are amenable to prevention, such as lung, breast, colorectal, prostate and head and neck cancers. Aboriginal and Torres Strait Islander peoples have a 14% higher incidence rate when compared with non-Indigenous peoples. Aboriginal and Torres Strait Islander peoples are more likely to be at the advanced stages of cancer when diagnosed, have lower rates of hospitalisations and have to wait longer for surgeries.

Cancer Australia has developed a set of National Aboriginal and Torres Strait Islander Cancer Control Indicators (NCCI) to monitor progress across areas including prevention and early detection; cancer screening; cancer patient journey including diagnosis and treatment; care coordination and communication including after cancer care; and end-of-life care. However, for over half of these NCCI measures, no data currently exists.

The Kulay Kalingka Study will provide Aboriginal and Torres Strait Islander led, designed, and governed national-level data across the NCCI measures to monitor and guide improved cancer awareness, understandings of care, treatment, and service delivery for Aboriginal and Torres Strait Islander peoples.

This community-driven data will enable monitoring and reporting of national trends over time against Cancer Australia’s National Cancer Control Indicators. The study will provide data about Aboriginal and Torres Strait Islander experiences of cancer where no data currently exists and will guide national cancer control research, policy and clinical care, to improve outcomes for Aboriginal and Torres Strait Islander peoples.