Fifty years after we passed a constitutional referendum to count Aboriginal and Torres Strait Islander people in the Australian Census, data limitations mean they are still not counted in many health statistics.
Take a recent report produced by The Heart Foundation, for example. This mapped hot spots for heart disease and stroke (cardiovascular disease) across Australia, but only for non-Indigenous Australians. The explanation in notes to the report indicates that:
… due to the low population and insufficient ABS data, we are unable to provide a true representation of CVD [cardiovascular disease] prevalence in the Northern Territory… The CVD prevalence tables and maps are for persons aged 18+ only and do not include Aboriginal and Torres Strait Islander peoples.
We lack this information because we do not link routinely collected health care and death data with information from the census. This prevents us from being able to know if we are making any progress towards reducing cardiovascular disease, which is a leading cause of death of Indigenous Australians. However, they aren’t the only group who miss out – the health of all Australians depends on more data sharing.
Preventing heart disease in Australia
Population studies have long shown us that factors such as having high levels of cholesterol place people at a higher risk of having a heart attack. Based on a person’s age, gender and a relatively small number of other factors, it is possible to work out his or her risk of having a heart attack or stroke.
Identifying those people at high risk allows effective treatments, such as cholesterol-lowering drugs, to be targeted at those who benefit most.
Let’s consider how we treat heart disease in Australia. Different types of data are held by different levels of government and by many organisations in our fragmented health system. This makes it almost impossible for researchers to combine clinical information (such as patients’ blood pressure readings) with data collected from hospitals indicating whether they were later admitted for a heart attack or stoke.
Because Australia lacks this information, current guidelines for treating heart disease and stroke are largely based on a risk-prediction tool derived from a US study published more than a quarter of century ago.
Indigenous Australians are still not identified in much of our health data. from shutterstock.com
Researchers in the United Kingdom have developed new tools for assessing heart disease risk for their population. Unlike Australian researchers, they were able to access de-identified information from 2.3 million patients attending a general practice, then link this data to over 140,000 cardiovascular events such as heart attacks.
This has enabled better targeting of prevention strategies for managing cardiovascular disease as doctors are more accurately able to assess a patient’s risk.
The Australian Bureau of Statistics has in the past linked the census with death statistics to provide estimates of the gaps in life expectancy between Indigenous and non-Indigenous Australians. Despite these efforts, we lag behind countries such as New Zealand, which has a more holistic approach to using data to understand ethnic and socioeconomic disparities.
Access to data and the ability to analyse those data are seen as critical to finding an evidenced-based way to reduce health disparities in New Zealand. Having better data has focused efforts to prevent both rheumatic fever (which can lead to a heart condition which many Aboriginal Australians also suffer) and cardiovascular disease in the Maori and Pacific populations.
Other countries do it – we should too
On the day before the 2017 federal budget, the government tabled the Productivity Commission’s report on the use and availability of data. The report advocated greater use of both public and private data to:
enable new products and services that transform everyday life, drive efficiency and safety, create productivity gains and allow better decision-making.
The controversy surrounding the 2016 Census demonstrates some Australians have genuine fears about how the data they provide will be retained and used. While we must put in place effective measures to protect against the malicious use of personal data, not using the information collected about Australians comes at a cost.
Other countries routinely use data to tackle important issues that are not being addressed in Australia. The Productivity Commission report (page 54) explicitly recognises this:
Governments across Australia also hold lots of data, but are typically not using it to the extent that opportunities being taken overseas exemplify, and lack a comprehensive plan to do so in most cases.
While the recent budget contains many spending announcements, it takes more than money to improve the health and wellbeing of Australians. We also need information and knowledge that can only be obtained by making better use of existing national and local data resources.