To inform how My Health Record data can be used and protected for public health and research purposes, the Australian Government has developed a framework in consultation with consumers, clinicians, medical researchers, industry experts, privacy advocates and the Office of the Australian Information Commissioner.
The framework defines how data on the My Health Record system can be used for research and public health purposes while preserving privacy and security of data in the system.
Key aspects of the final framework include:
- Individual consumers who have a My Health Record will be able to opt-out of the use of their My Health record system data for secondary purposes. In this way, consumers can have a My Health Record but elect for their data not to be used for research and public health purposes.
- Data cannot be used for commercial and non-health-related purposes, including direct marketing to consumers, insurance assessments, and eligibility for welfare benefits.
- Insurance companies will not be able to access the data.
- The Australian Institute of Health and Welfare (AIHW) will be appointed as the organisation to manage and release datasets for the My Health Record Secondary Use of Data Governance Board.
- Data will not immediately flow from My Health Record; the AIHW Ethics Committee will first consult with stakeholders on planned ethics and approvals processes to ensure protection of individuals privacy;
- The My Health Record Secondary Use of Data Governance Board will be responsible for, and release regular statements about, data availability and quality; and
- The framework is to be reviewed two years after the first dataset is released.
It is expected the first release of secondary use data will not occur until at least 2020.
Further information on the framework can be found at the Department of Health's website.