The My Health Record system is Australia’s digital health record system. In addition to supporting your care, the data in the My Health Record system may also be used to provide insight into the effectiveness of the services and treatments being provided to continue to improve health outcomes. This data will 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.
On 11 May 2018 the Minister for Health, the Hon Greg Hunt MP, announced the release of the Framework to guide the secondary use of My Health Record system data (the Framework).
The development of the Framework was informed by a national public consultation process. A Community Consultation Summary Report was developed to reflect the findings of that process.
The purpose of the Framework is to inform Australians about how My Health Record system data may be used for research, policy and planning (‘secondary’) purposes. There are also other limited circumstances in which a consumer’s My Health Record information may be used under the My Health Records Act, including for court proceedings, coronial investigations and law enforcement purposes, and to enable the System Operator to run the My Health Record system effectively (such as to undertake investigations and audits).
The Framework describes the governance mechanisms and technical processes to be implemented before data can be released for research, policy and planning secondary purposes. Key principles include:
- Individuals can choose to have a My Health Record but elect for the information in it not to be used for secondary purposes
- My Health Record system data cannot be used solely for commercial and non-health related purposes
- The provision of My Health Record system data to insurance agencies will not be permitted
- The use of My Health Record system data for clinical trials recruitment will not be considered until an explicit consent option is available in the system access controls
- Custodianship for the secondary use of My Health Record system data rests with the Australian Institute of Health and Welfare
- Applications for My Health Record system data will be assessed by a Data Governance Board, comprising representatives from the AIHW, the Australian Digital Health Agency (as the System Operator) and a range of independent experts, including representatives from population health/epidemiology, research, health services delivery, technology, data science, data governance and privacy, and consumer advocacy
- The Board will consider applications for the secondary use of de-identified My Health Record system data, as well as identified data with the consent of the healthcare recipient
- The Board will regularly reconsider the privacy protection processes around secondary use of My Health Record system data. Particular consideration will be given to circumstances where there is already data in the public domain about individuals.
An implementation plan will be developed in the second half of 2018 by the Department of Health, the AIHW and the Australian Digital Health Agency in collaboration with key stakeholders and project partners. The Implementation Plan will be published on this website once it has been finalised.
The first release of data is expected to commence from 2020, subject to the establishment of the Framework’s governance arrangements and technical infrastructure. The Framework will be subject to regular review – the first review will take place no later than two years after the first release of data.
PDF version: Framework to guide the secondary use of My Health Record system data (PDF 4189 KB)
Word version: Framework to guide the secondary use of My Health Record system data (Word 4117 KB)
PDF version: Frequently Asked Questions (PDF 123 KB)
Word version: Frequently Asked Questions (Word 29 KB)