Our first report, Flying Blind: Australian Consumers and Digital Health highlighted the fragmented nature of Australian consumer health data. Volume 2: Flying Blind: Australian Researchers and Digital Health turns its attention to Australian researchers and the access and use of data for health and medical research (HMR).
HMR is vital to supporting and sustaining our health system. Australia has a wealth of health data resources, many of which are originally collected for other purposes such as administration or compliance.
With appropriate access to these data and through data linkage, health researchers can generate new insights, uncover new trends and deepen our understanding of health and disease.
In this edition, the aim is to understand how well these national data assets are used for research and where barriers may exist to more effective use.
This report explores:
- The nature of HMR data, as well as how it is collected, prepared and made available
- The processes researchers have to go through in their attempts to gain access to this data
- The policies and governance structures that make up Australia’s wider HMR regime.
Australia’s fragmented, piecemeal data environment creates impediments to important research that can enhance the quality of Australian healthcare and improve the health and wellbeing of every Australian.
Australia needs to embrace a nationally consistent, streamlined approach to data preparation, access and release that provides clarity and simplicity for all involved, maximises opportunities for HMR, and, most importantly, minimises the time between research and translation into better policy and improved clinical practice.