More and more Australians and GPs, pharmacies, hospitals, diagnostic imaging services and pathology labs are connecting to My Health Record. This means there is now an increasing amount of information that could be available to guide health service planning, policy development and research to further improve Australia’s health system. This data would always be de-identified so that it cannot be traced back to an individual unless they specifically agree to the use of their personal information.
My Health Record data could offer insight into the effectiveness of the services and treatments being provided to improve health outcomes for patients. This data could help health researchers and public health experts ensure patients receive evidence-based care and that future health investment is directed at those who need it most.
The Framework to guide the use of My Health Record system data for research or public health purposes
The Australian Government has developed a framework to guide the use of My Health Record system data for research and public health purposes. This framework was developed in consultation with consumers, clinicians, medical researchers and industry experts.
The aim of the framework is to be clear and open about the potential use of your data. The framework includes the following principles:
There will be no use of My Health Record data solely for commercial and non-health related purposes.
Insurance agencies will not be permitted access to My Health Record system data.
Data can’t be used to assess eligibility for benefits (e.g. use by Centrelink and/or the ATO to make determinations relating to an individual).
High standards are set for protection of people’s privacy.
Use of identified data will be subject to strict ethics approvals.
My Health Record system data released for research or public health purposes must not be sold.
You can decide if you don’t want your My Health Record data to be used for research or public health purposes.
How is data protected?
The Australian Institute of Health and Welfare (AIHW) has been appointed as the Data Custodian to manage the use of My Health Record system data for research or public health purposes, while protecting the privacy and security of that data. The AIHW has a remit to make information and statistics available that can help shape and improve health in Australia through better services and programs.
All applications for data will need to meet strict privacy, assurance and risk mitigation requirements to be considered.
Applications will be reviewed by the My Health Record Data Governance Board (still to be established) with representatives from the AIHW, the Australian Digital Health Agency (as the System Operator), the Aboriginal and Torres Strait Islander Peoples’ Advisory Panel, as well as independent experts, including representatives from population health, research, health services delivery, technology, data science, data governance and privacy, and consumer advocacy.
When will My Health Record system data be released under the framework for research or public health purposes?
The Department of Health is leading implementation of the framework in partnership with the AIHW and the Australian Digital Health Agency.
The AIHW is currently undertaking an assessment of My Health Record system data to identify future use applications for research and public health purposes. This assessment will support future consultation and development of subordinate legislation, as well as the establishment of a Data Governance Board, technical infrastructure and communication activities.
The release of data for research and public health purposes will only begin once all necessary infrastructure is in place.
Will your personal information ever be released for research or public health purposes?
It is expected that most applications that are assessed will be for the use of de-identified data. This is where your personal information is removed from the dataset and you cannot be identified.
Applications can also be made for the use of identified data for research and public health purposes. This is where your personal information is included in the dataset. However, there will be no release of your identified data unless specific consent from you has been granted.