Flying Blind 2: Australian Researchers and Digital Health

Volume 2 of the Australian Health Data Series, produced by the Health Market Quality Research Program of the Capital Markets Cooperative Research Centre (CMCRC) and the Digital Health Cooperative Research Centre, examines how Australian health and medical researchers access and use health data. The authors review the research ecosystem, the policies and governance frameworks surrounding data collection and preparation, data linkage practices, the approaches of ethics committees and data custodians to granting access, and policies on reusing research data, building on feedback to a series of blog posts. The report finds that although Australia holds high-quality, well-coded health data, researchers often spend months or years assembling datasets because of fragmented custodianship, inconsistent state and federal policies, complex ethics and funding processes and opaque governance, and some abandon linked-data studies or turn to overseas data. A medication safety case study and comparisons with the United Kingdom, the United States, Singapore, Finland and Estonia illustrate alternative models, and the authors project cost savings and returns in the range of $3 billion over 15 years. They call for a nationally consistent, risk-based approach to data preparation, de-identification and release; privacy and security by design; uniform implementation of national mutual ethics agreements; incentives for data custodians; and expedited implementation of the Data Sharing and Release Act for the health sector.