Data Availability and Use: Submission to the Productivity Commission Inquiry

This submission to the Productivity Commission’s Inquiry into Data Availability and Use answers the Issues Paper questions from the perspective of health and medical research. Research Australia maintains that public sector datasets such as the Pharmaceutical Benefits Scheme (PBS), Medicare Benefits Schedule (MBS), state hospital admissions, birth and death registers and the My Health Record are an underused national resource, and that better access would make research more efficient, improve the efficiency of health care and support new health products. It cites total health expenditure of $154.6 billion in 2013–14, Australia’s ability to report only 26 of 52 OECD Health Care Quality Indicators in 2015 because hospital and mortality data are not routinely linked, and polling showing 79% public support for using medical records in research. Barriers identified include custodian culture, under-resourcing, skills shortages, the Personally Controlled Electronic Health Records Act 2012, which permits release of de-identified data only, Australian Privacy Principle 9’s restriction on using Medicare numbers for linkage, and inconsistent privacy laws across jurisdictions. Case studies include Western Australia’s Data Linkage Branch, Queensland’s Master Linkage File, the Population Health Research Network, Prospection, and the VALiD vaccine safety study, which took about eight years to secure and link data. Research Australia recommends amending the PCEHR legislation to allow identified data to go to accredited integrating authorities, a national uniform framework for linked data led by the Council of Australian Governments (COAG), legislative exceptions for government identifiers, and a whole-of-governments approach based on the Public Sector Data Management Project’s roadmap.