Using data for research and public health purposes
‘Secondary use’ is when approved researchers or government officials use My Health Record data for research and public health purposes.
This benefits Australia’s health system by:
- ensuring that patients receive quality, evidence-based health care that is safe, accessible and cost-effective
- giving researchers insights into the effectiveness of current services and treatments
- informing our planning of future programs, policies, and health investments.
Individuals can choose whether and how their My Health Record data is used for research.
Data is not yet available
My Health Record data is not yet available for research and public health purposes.
We will only make it available to researchers and public health experts once we have established My Health Record research and public health governance arrangements.
We are working on this.
Secondary use framework
We have developed a Framework to guide the secondary use of My Health Record system data. It outlines how information in My Health Record can and cannot be used for research, policy and planning purposes.
Implementing the framework
Three key partners are implementing the framework.
Australian Government Department of Health
We are responsible for:
- developing a My Health Record Research and Public Health Rule
- appointing an Interim Chair to advise us on implementing the framework
- establishing a My Health Record Data Governance Board that will consider applications for use of My Health Record data. The board will oversee the integrity, security and release of data for research and public health purposes.
Australian Digital Health Agency
The Australian Digital Health Agency is the My Health Record system operator. It is responsible for establishing the technical infrastructure required to support the efficient and secure sharing of My Health Record data for research and public health purposes.
Australian Institute of Health and Welfare (AIHW)
The AIHW is the My Health Record data custodian for research and public health purposes. It is responsible for ensuring the security, quality and usefulness of data before it is released for research projects.
Proof of concept
Since July 2021, these partners have been working together to establish the technical infrastructure needed to run a proof of concept. The proof of concept will also explore the benefits of using My Health Record data for research and public health purposes.
It will investigate establishing a Data Governance Board as part of the ongoing governance arrangements required to oversee future My Health Record data research projects.
Interim Chair of the Data Governance Board
We created the role of Interim Chair to provide expert advice for the proof-of-concept work. Professor Mark Taylor started in this role on 29 November 2021.
The Interim Chair will provide strategic support for:
- a refresh of the Framework to guide the secondary use of My Health Record system data
- the proof of concept, including:
- establishing the Data Governance Board
- developing a legislative rule that will impose requirements on people handling My Health Record information for research and public health purposes
- conveying the benefits of using My Health Record data for research and public health purposes
- consulting with the broader public and key stakeholders on their views.
- identifying the AIHW as the data custodian
- authority to establish a My Health Record Data Governance Board which will consider applications for data
- authority to develop the legislative rule
- establishing penalties for not complying with these requirements.
Other elements will be incorporated into the governance scheme to guide the collection, use and disclosure of data for research or public health purposes.
We will review the framework as a part of establishing the legislative rule and then regularly after that to make sure the use of My Health Record data remains appropriate. The next review will take place no later than 2 years after the first dataset is released to be used for research and public health purposes.