A gap exists in accurate records of Aboriginal and Torres Strait Islander health data – especially with under-reported births and deaths – so improvements in Indigenous health provision depend on finding a solution for better data collection and management across many crucial areas.
Associate Professor Kalinda Griffiths has received more than $1.6 million in NHMRC funding for her project Strengthening Transparent Reporting and Improving Visibility and Equity for Aboriginal and Torres Strait Islander Health – which will be a key facilitator to improve data quality, data governance, workforce development and Indigenous health measurement.
“We have an under-reporting of Aboriginal and Torres Strait Islander health data in official statistics, particularly in rural and remote areas, and this feeds into important figures such as life expectancy,” she says.
She points to alarming under-registration of birth records, with an estimated 17 percent of Aboriginal and Torres Strait Islanders not having their births registered. This figure rises to between 25 percent and almost 30 percent in remote areas of Queensland and Western Australia, respectively.
“That’s one in four babies who aren’t on any official records – and the implications are serious. They don’t figure in any census, which shows the true size of communities, or their needs, or requirements for health resources, or even the fair distribution of GST allocations from governments,” says Associate Professor Griffiths.
“These numbers matter, because they feed into vital future projections. The role of accurate data is so important. It tells us who needs what, and where.”
The five-year NHMRC project begins in 2026 and will contain several projects with a specific focus of attention, including cancer data, and births and deaths registration.
This program aims to address health inequities by improving the quality, usability and governance of Aboriginal and Torres Strait Islander health data in Australia.
“The COVID pandemic showed us the importance of good data, because it enabled us to access those people who required support and health services.”
Associate Professor Griffiths says it is important that Aboriginal and Torres Strait Islander people are leading this research, as it will empower Indigenous communities to control their data and train researchers to support culturally responsive practices.
“Ultimately, this will enhance the health and wellbeing of Aboriginal and Torres Strait Islander people,” she says. “It’s an important time for this to happen. In a tense global era, we are seeing that the trust between governments and communities is tenuous in many countries, so it’s important that we have beneficial systems to build that trust.
“This research provides an important platform for Aboriginal and Torres Strait Islander people to determine processes regarding their data and information, to support needs across policy and health systems. It will enable mechanisms of Indigenous governance and work to build trusted environments for Indigenous data.”