Data Availability and Transparency Bill: Submission to the Senate Finance and Public Administration Legislation Committee

This submission to the Senate Finance and Public Administration Legislation Committee supports passage of the Data Availability and Transparency Bill, which establishes a framework for sharing Australian Government data for service delivery, policy and research. Research Australia maintains that the risks of using data already exist and that the Bill, with its data sharing principles, accreditation of users and data service providers, and public interest test, will reduce those risks while improving researchers’ access. It cites its own polling, in which 93% of Australians supported the use of health records for research in 2017, and a review finding 93% of patients willing to give broad consent. Member case studies illustrate both benefits and current barriers: the IHOPE study of Indigenous health disparities, the Australian Longitudinal Study on Women’s Health, HPV vaccine effectiveness research, a COVID-19 real-time information system unable to obtain de-identified surveillance data, and the QSkin and CARE cannabis trials, where consented access to Medicare Benefits Schedule (MBS) and Pharmaceutical Benefits Scheme (PBS) records was delayed or refused. Responding to the Scrutiny of Bills Committee, it recommends that ‘public interest’ not be defined in the Bill but examined in periodic reviews under clause 142, that the balance between the Bill and data codes is appropriate, that Human Research Ethics Committee (HREC) approval should not be expected for all research data sharing given low and negligible risk pathways, and that ethical considerations be addressed in guidance from the National Data Commissioner.