A national study into the risks of CT scans in children that was delayed by three years waiting for Commonwealth approval to access data has supported findings that Australian health and medical researchers face a myriad of problems around data accessibility for research. 
 
Another example, a University of Melbourne researcher who spent $60,000 of her research budget to access 6000 Victorian births, deaths and marriages certificates, also supported the claims of the Flying Blind 2: Volume 2 – Australian Researchers and Digital Health report. 
 
The study found that better access for researchers to health data could save the country $3 billion and improve the health of all Australians over the next 15 years. 
 
Flying Blind is a collaboration between the newly established Digital Health Cooperative Research Centre (CRC), the Capital Markets CRC and Research Australia.
 
The report indicated that in spite of the abundance of digital data that Australia holds, health and medical researchers often spend several months and even years assembling data required for their research. This has impacted advances in both health and medical science, as well as the development of the health and medical technology and pharmaceutical sectors.  
 
According to the report, these obstacles very often result in long delays where research funding almost runs out, forcing many researchers to abandon linked data studies and make do with small data sets or seek overseas data banks to address their research questions. 
 
“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,” the Digital Health Cooperative Research Centre research scientist and mentor and lead author of the report Uma Srinivasan said. 
 
Delays are caused by a range of factors, the report found. 
 
One of the factors is the fragmentation of health services delivery across primary, secondary, hospital and allied healthcare setting. 
 
Further barriers include: a health and medical research ecosystem comprised of complex funding and ethics approval processes, as well as ad hoc policies and data governance strategies that differ across state and federal data custodians. 
 
 
The report stated that these “processes and policies lack consistency” and are “often not transparent to researchers, causing inordinate delays in getting necessary approvals and access to health and medical research data”.
 
“The problem is that 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,” the report stated. 
 
“[Australia can] do much more,” Digital Health CRC CEO David Jonas said. 
 
“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.”
 
The report also proposed a series of recommendations to enhance medical research in Australia:
  • A harmonised process of data governance that provides a path from collection to researchers, and ensures privacy and confidentiality are maintained.
  • Appointing organisations to act as data-holding organisations for both structured and unstructured data
  • Creating Accredited Release Agencies to build data collections suitable for research 
  • Privacy, security and confidentiality by design
  • Publicly accessible protocols for all Australians to see how health data is used and how it is making a difference
  • A single national data rich access point for researchers, as well as healthcare and health technology sectors.
Flying Blind is a series of three reports dedicated to uncovering the acute levels of data fragmentation existing at all levels of Australia’s health landscape. The first in the series focused on the consumer health journey while the third will provide a view of data from the perspective of funders, policy and regulatory agencies.
 

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