The cancer gap between First Nations and non-Indigenous people is widening – but better data could help

Cancer figures provide stark evidence of the gap between the health of Aboriginal and Torres Strait Islander people and non-Indigenous people in Australia. The difference is confronting – and it’s increasing over time.

Cancer is the leading broad cause of death for Aboriginal and Torres Strait Islander people, accounting for 3,612 deaths (23% of deaths). Indigenous Australians are 14% more likely to be diagnosed with cancer. They are 20% less likely to survive at least five years beyond diagnosis.

While the likelihood of dying from cancer in the general population declined by 10% from 2010 to 2019, it increased by 12% for Aboriginal and Torres Strait Islander people.

These figures highlight major challenges for the federal government’s stated aim to close the life expectancy gap in a generation. But data will also be critical to meeting this goal.

Accurate and relevant data

There continues to be limited visibility in the needs of Aboriginal and Torres Strait Islander people with cancer.

The recent World Cancer Day, with its theme to “Close the care gap”, comes at a pivotal moment in our nation’s history, with momentum building towards a Voice to Parliament.

Makarrata – treaty or agreement-making – has the potential to have a profound and positive impact on the health and healing of Aboriginal and Torres Strait Islander communities. At both the federal and state levels, the dialogue, yarning and truth-telling arising from this process acknowledges the history and trauma of dispossession, and its impact on generations of Aboriginal and Torres Strait Islander people.

Much of this discussion is embedded in the need for constitutional recognition of Aboriginal and Torres Strait Islander peoples’ unique and enduring cultures, and better supporting leadership in their own affairs.

Viewing these aspirations through the prism of cancer care reveals a complex array of barriers to recognition and leadership. Systemic racism and limitations in appropriate, culturally safe health-care services continue to negatively impact Aboriginal and Torres Strait Islander peoples’ experiences and outcomes.

Aboriginal and Torres Strait Islander people experience limited access to health services within Western systems, as well as discrimination within those systems. This results in a lack of trust when dealing with governments and service providers.

Part of the solution will be gaining a more accurate picture of cancer outcomes. While statistics tell us the proportion of Aboriginal and Torres Strait Islander people with cancer who die is increasing, the reality is likely far worse. Research shows Aboriginal and Torres Strait Islander cancer reporting is underestimated. One reason is the lack of identification of Aboriginal and Torres Strait Islander people in official health data.

A New South Wales study found 16% of Aboriginal and Torres Strait Islander people were not reported on official hospital admissions data. There is a range of reasons for this, including whether or not services ask the required Standard Indigenous Question and the propensity or willingness for Aboriginal and Torres Strait Islander people to identify in the services they attend.

There have been a range of efforts to improve Aboriginal and Torres Strait Islander identification within the data, including linking multiple official data sources. But this is still yet to be appropriately implemented by governments.