Tue Feb 7

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

Written by: Kalinda Griffiths, Scientia lecturer, UNSW Sydney

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 ^[1] for Aboriginal and Torres Strait Islander people, accounting for 3,612 deaths (23% of deaths). Indigenous Australians are 14% more likely ^[2] 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 ^[3] 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 ^[4] 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 ^[5], 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 ^[6] – 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 ^[7] 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 ^[8] 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 ^[9] 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 ^[10] on official hospital admissions data. There is a range of reasons for this, including whether or not services ask the required Standard Indigenous Question ^[11] and the propensity or willingness ^[12] for Aboriginal and Torres Strait Islander people to identify in the services they attend.

There have been a range of efforts ^[13] 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.

Patients may not be asked whether they are Indigenous – or be unwilling to share this information on hospital admission. Shutterstock ^[14]

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 promising developments ^[16] in this area, including the What Matters 2 Adults ^[17] study, which identifies factors important to the wellbeing of Aboriginal and Torres Strait Islander people. There’s also been work to measure the cancer care experiences ^[18] 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 first review ^[19] 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 national round table ^[20] 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 Optimal Care Pathways for Aboriginal and Torres Strait Islanders ^[21] was released in 2018 along with an implementation plan in 2020.

The ongoing development of the Australian Cancer Plan ^[22] by Cancer Australia is informed by the Leadership Group on Aboriginal and Torres Strait Islander Cancer Control. The National 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.