"Flying Blind"
Australian Consumers and Digital Health

A report about the Australian Health Data Landscape

Legislation, Regulation, Policy

Helpful & Harmful

There is a lack of uniformity and clarity in legislation and regulatory policies concerning healthcare across federal, state, and local governments. Furthermore, much of the current regime was imposed decades ago. As a result, much of it is restrictive and patently out of step with the changing ways in which consumers regard the use of their own data for research and the improvement of healthcare.

This means that crucial health information from Australia’s vast data collections (such as MBS and PBS) remain untapped. 


Nancy is happy for her data to be shared amongst her health service providers. In fact, she had always assumed that it happened: after all, it is  for her own healthcare. Nancy is also happy for her data being shared for research purposes as long as it is de-identified and she can provide her informed consent. She appreciates the need for balancing privacy concerns with the potential healthcare benefits that come from greater data sharing. 

Current Scenario: 

  • At the moment the legislation and regulation governing healthcare is not uniform across all jurisdictions.
  • The current regulatory environment makes it difficult to leverage the potential of MBS and PBS data to maximise consumer health outcomes. 
  • Privacy concerns and obstructive policies relating to the reuse of research data prevents research datasets being used to their full potential.
  • Researchers often have to seek approval from various different sets of ethics committees, slowing down potentially valuable research. 
The Impenetrable Regulatory Wall - Contraption or Convenience?