Diabetes prevalence in Australia may be 35% higher than estimated

New research from the University of Sydney used 45 and Up Study data to show that the number of Australians living with diabetes may be up to 35 per cent higher than previously estimated.

The study, published in Diabetes Research and Clinical Practice, applied a sophisticated algorithm to more than 250,000 adults in the Sax Institute’s 45 and Up Study. The algorithm used linked data from Medicare, hospital records, and pharmaceutical claims to identify people receiving care for diabetes.

53,700 people had clear evidence of diabetes in their health records, but nearly 19,000 of them weren’t registered with the National Diabetes Services Scheme (NDSS), a voluntary registry which is the reference standard for national prevalence of diabetes.

The results suggest there could be more than two million Australians living with diabetes, rather than the 1.5 million estimated from NDSS data in 2024.

It’s the first time a study has compared linked administrative data to an Australian diabetes registry, with the findings receiving national media coverage, including ABC Radio National’s Health Report.

Lead author Emma Cox, PhD Candidate from the Leeder Centre for Health Policy, Economics and Data, said the research highlights a much larger and more diverse population living with diabetes, particularly older Australians, people in remote areas, and culturally and linguistically diverse communities.

“A significant number of Australians are missing from national statistics. That makes it harder to plan services, allocate funding, and deliver prevention strategies where they’re most needed.”

The study also found that many people who are living with diabetes are managing the condition through lifestyle changes or medications like metformin. These groups may be less likely to register with the NDSS, which provides access to subsidised services and products such as insulin pump consumables, syringes and needles, and blood glucose testing strips.

Senior author Dr Alice Gibson from the Leeder Centre for Health Policy, Economics and Data, said that the study’s algorithm was strict in how it determined diabetes. “Someone only taking metformin, which can also be prescribed for prediabetes, also needed to appear in one of the other data sources such as Medicare or hospital data to be counted,” she said.

Dr Gibson, who has used the 45 and Up Study previously to research diabetes in relation to medical complications, medicine use and the link between oral health and diabetes, said that this new research shows that linked administrative data can be a powerful tool for accurate, population-level disease surveillance.

“Linked data gives us the clearest view we’ve had of diagnosed diabetes in Australia – and reveals where we’re falling short, and who’s being left behind. If we want to reduce the burden of diabetes and deliver on the promise of the National Diabetes Strategy, we need to invest in surveillance systems that are accurate, inclusive, and future-proof.”

The research was supported by an Australian Diabetes Society Servier Research Grant, an Australian Diabetes Research Trust Grant and a NSW Health EMCR CVD Capacity Grant.