Electronic Health Records and Healthcare Identifiers: Response to the Legislation Discussion Paper

This submission responds to the Australian Government’s Legislation Discussion Paper on electronic health records and healthcare identifiers, which proposed changes to the Personally Controlled Electronic Health Record (PCEHR) system, including a move to an opt-out model. Research Australia broadly supports the proposals, including opt-out, and focuses on making the system more useful for research. Citing the Council of Australian Governments’ mental health reform roadmap, the Productivity Commission’s 2015 Efficiency in Health paper and the National Diabetes Strategy consultation, it maintains that health records are most valuable when complete, available to researchers and linkable to other datasets. Because the PCEHR Act 2012 allows the System Operator to release only de-identified data, PCEHR data cannot currently be linked, which is inconsistent with the Individual Healthcare Identifiers Act 2010. Research Australia recommends amending the PCEHR Act to allow identified data to be used and provided for research within the National Statistical Service’s Statistical Data Integration Framework and accredited integrating authorities; recognising research more explicitly in the objects of both Acts; adding research expertise to the board of the proposed Australian Commission for eHealth; making cancellations of a record prospective so data remain available for research; retaining records indefinitely rather than for 30 years after death or 130 years from birth; and including research as a permitted purpose for collection, use and disclosure, limited to research approved by a Human Research Ethics Committee.