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Expert report calls for better access to health data to save lives and dollars

Press release November 29, 2018 Health DIGITAL

Better access to health data could save $3 billion and improve the health of all Australians.

Launch, 5.00 pm, Thursday 29 November at the Capital Markets CRC, 
Level 4, 55 Harrington Street, The Rocks, Sydney

Interviews and RSVP: Marisa Cardoso 0403 957 989 or email [email protected]

Better access to health data could save $3 billion and improve the health of all Australians. A new report calls on government to take action and outlines the simple steps that would provide researchers with efficient and ethical access to anonymised data.

“We have digital health data that can save lives. We have technologies that can transform healthcare, saving lives and dollars. Yet researchers’ hands are tied,” says Uma Srinivasan from the Digital Health Cooperative Research Centre, the lead author of the report.

Already, Australian medical researchers have:

·         Used linked cancer notifications with Medicare data to make CT scans safer for children

·         Found ways to improve rectal cancer treatment in rural Australians by linking cancer registry and hospital records

·         Shown that teenagers are most at risk of paracetamol overdoses, by analysing over 14,000 hospital admissions.

Today they’re using data to:

·         Determine an individual’s risk of type-2 diabetes by analysing private insurance health data

·         Identify ineffective treatments such as knee arthroscopies in the over-50s

·         Find which prescription drug combinations put 230,000 people into emergency each year.

“They could do much more,” says David Jonas, CEO of the Digital Health CRC.

“Australia is an advanced nation when it comes to capturing data, but we are far behind our peers when it comes to providing access to that data,” David says.

Accessing anonymised data is difficult and expensive because of the fragmentation of health data, the multiple Commonwealth and State Acts applying to it and the need to often deal with large numbers of data custodians and ethics committee. One University of Melbourne researcher had to spend $60,000 of her research budget to access 6,000 Victorian births, deaths and marriages certificates. A national study into the risks of CT scans in children was delayed by three years, waiting for Commonwealth approval to access data.

The report, Flying Blind: Volume 2, makes recommendations that would transform research access to health data, leading to dramatic changes to research efficiency and ultimately to saving lives and dollars.

The report proposes a suite of simple steps that would provide appropriate, ethical and efficient access to health data, incorporating privacy, security, and confidentiality by design. These steps would provide $3 billion in savings and return on research investment over the next 15 years.

Media contacts: Marisa Cardoso 0403 957 989 or email [email protected], Download report at