Secondary Use of My Health Record Data: Response to the Consultation on Development of a Framework for Secondary Use

This submission responds to the Department of Health’s consultation on the development of a Framework for the secondary use of My Health Record data, answering its 19 questions. Research Australia maintains that the Framework should start from the Australian Government Public Data Policy Statement and its principle of ‘open by default’, aiming for de-identified data to be ‘as open as possible’ while managing the risk that unit record level data can be re-identified. It cites its 2017 polling showing 93% public support for using patients’ medical records for research. It recommends the broadest interpretation of ‘research’ and ‘public health purposes’ under section 15(ma) of the My Health Records Act 2012, with aggregate data freely available, and opposes excluding commercial research or restricting access by organisation type or to Australian users. It supports access to identified data for any purpose the individual authorises, and the Productivity Commission’s proposal for ‘trusted researchers’ if the Act is amended. Research Australia rejects all the governance models in the consultation paper and the requirement to destroy datasets after 12 months, proposing instead legally binding licences or agreements, with standard licences for classes of application developed using the Department of the Prime Minister and Cabinet’s process for sensitive unit record data. It also supports a public register of data requests, no fees for publicly funded and not-for-profit researchers, amendment of section 15(ma) and the Data Policy, and public education on the research use of health information.