³Ô¹ÏÍøÕ¾

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 for Aboriginal and Torres Strait Islander people, accounting for 3,612 deaths (23% of deaths). Indigenous Australians are 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 by 12% for Aboriginal and Torres Strait Islander people.

These figures highlight major challenges for the federal government’s stated aim to 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 , 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.

– 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 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 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. 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 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 for Aboriginal and Torres Strait Islander people to identify in the services they attend.

There have been a 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.

Tracking everyone’s cancer experiences

Appropriate measures that reflect the experiences and needs of Aboriginal and Torres Strait Islander people with cancer are desperately needed.

There have been some in this area, including the study, which identifies factors important to the wellbeing of Aboriginal and Torres Strait Islander people. There’s also been work to measure the of Aboriginal and Torres Strait Islander people. But these tools are not used routinely in health-care services, which limits culturally relevant assessment of patients to improve their care.

Bridging the care gap requires health and cancer care services to provide culturally competent and safe health-care systems.

There have been some notable developments since the into Aboriginal and Torres Strait Islander cancer research and reporting in 2003. These include Cancer Council Australia convening the first ever round table on Aboriginal and Torres Strait Islander cancer in 2004, followed by the first on Priorities for Aboriginal and Torres Strait Islander Cancer Research in 2010.

The latter brought together leading experts, Aboriginal and Torres Strait Islander cancer survivors and community members, and representatives from Aboriginal and Torres Strait Islander-controlled organisations.

At the policy level, the was released in 2018 along with an implementation plan in 2020.

The ongoing development of the by Cancer Australia is informed by the Leadership Group on Aboriginal and Torres Strait Islander Cancer Control. The ³Ô¹ÏÍøÕ¾ Aboriginal Community Controlled Organisation is also developing a national cancer plan, and there are state and territory plans in development to better support the community-controlled sector.

Embedding equity

If we are going to change the trend and close the cancer care gap, we need to embed equity as a core element within health systems and services. This will ensure appropriate resources are allocated to identify Aboriginal and Torres Strait Islander people in the data, as well as developing measures important to their cancer care.

We need to work to better understand and eliminate the barriers and challenges Aboriginal and Torres Strait Islander people face. We can do this through supporting Aboriginal and Torres Strait Islander voices and leadership in research, education and health.

Kalinda Griffiths receives funding from the ³Ô¹ÏÍøÕ¾ Health and Medical Research Council and the Australian Research Council. She is also Thinker in Residence at the Australian Health Promotion Association. She is Research and Education Lead, Aboriginal and Torres Strait Islander Health at the Victorian Comprehensive Cancer Centre Alliance.