Improving Access to and Linkage Between Health Data Sets Held by Commonwealth Entities: Response to the Invitation by the Senate Select Committee into Health

This submission to the Senate Select Committee on Health responds to its inquiry into improving access to and linkage between health data sets held by Commonwealth entities. Research Australia maintains that these data sets are a major resource for research that can improve care, prevention and health system efficiency, and recommends the Committee to also consider linkage with other Commonwealth data (such as social security records) and state and territory data (such as hospital admissions and immunisation records). Drawing on the COAG Roadmap for National Mental Health Reform, the National Diabetes Strategy consultation paper, the Productivity Commission’s Efficiency in Health paper and the Australian Atlas of Healthcare Variation, it recommends a new national framework recognising that data sets are a valuable and expensive national resource; that data should be collected and stored to enable linkage for research; that research is a legitimate purpose for collecting, using and disclosing information; and that data set operators should facilitate, and be resourced for, research access. It recommends amending the Personally Controlled Electronic Health Records Act and other enabling legislation so identified data can be provided to approved data linkage agencies such as the Population Health Research Network, with adherence to the 2010 Commonwealth data integration principles as a condition of approval. It supports the Productivity Commission’s call for privacy reform, and recommends greater data management, analysis and health services research capability. Research Australia’s polling found only 4% of Australians unwilling to share their health information for research.