A collaboration between the Digital Health Cooperative Research Centre, the Capital Markets CRC and Research Australia, the report – Flying Blind 2: Australian Researchers and Digital Health – found that better access to health data for researchers could save the economy $3 billion and improve health outcomes for all Australians, over 15 years.
In spite of the abundance of digital data that Australia holds, health and medical researchers are continually forced to assemble data-sets for their research themselves – a process which can take months, if not years. These delays can also drain funding and resources, forcing researchers to abandon linked data studies or seek support from other countries’ data-banks.
The report also told of a University of Melbourne researcher having to pay spend $60,000 of her research funding in order to access Victoria’s registry of births, deaths and marriages. This is made even more absurd when it was discovered that the research was government funded, meaning the funds went from the government to the researchers and back to the government.
Fragmentation of Australian health data also proves immensely troublesome, with various State and Federal laws and regulations creating a maze of bureaucracy researchers must navigate.
The Flying Blind report has proposed a series of recommendations for enhanced medical research in Australia, including the creation of Accredited Release Agencies to build data collections suitable for research, and a single national data-rich access point for researchers. The report also suggests creating publicly accessible protocols for all Australians to see how health data is used and how it is making a difference.