You can choose to share your health data for secondary uses like research. This will help to improve Australia’s healthcare system and provide better health outcomes for Australians in the future.
My Health Record exists to provide you and your family with safe and efficient healthcare.
You may also choose to share de-identified data from your My Health Record for research purposes. When health data is de-identified, it means you are anonymous and it can’t be traced back to you.
Choose to share your data
If you are happy for your My Health Record data to be used for public health and research purposes, you don’t need to do anything.
If, however, you don't want your data to be used for these purposes, follow these steps:
- Log in to your My Health Record through myGov.
- Select the record you would like to access.
- Navigate to ‘Profile & Settings’ menu.
- Select ‘Profile’.
- Scroll down until you see the ‘Secondary use of data’ section.
- Click the ‘Do not participate’ button.
If you change your mind, you can choose to share your data again by following the same steps and choosing ‘Participate’.
How health data can improve health outcomes for Australians
In 2019, most Australians will have a My Health Record. This means there will be more information available to:
- guide health service planning, policy development and research
- give us an understanding of how well existing services and treatments are working
- better target funding to the areas and people who need it the most.
About data usage
Your health data may be used for research in a de-identified form (which means you will be anonymous and it cannot be traced back to you).
In some cases, an application may be made for identified data. If this happens, you will be contacted directly so you can choose to share your data or not.
No-one can access your identified data unless you have given specific consent.
It is expected that My Health Record data will be used for public health and research purposes from 2020.
Protections for data usage
The Australian government has put protections in place around the secondary use of data, including:
- A Framework to guide the secondary use of My Health Record system data (the framework).
- Appointing the Australian Institute of Health and Welfare (AIHW) to manage applications for secondary data use and protect the privacy and security of data.
- A My Health Record Data Governance Board to review any applications for data use. The board contains members from AIHW, the Australian Digital Health Agency, the Aboriginal and Torres Strait Islander Peoples’ Advisory Panel, as well as independent experts.
- Ethics committee approval on a case by case basis to ensure people’s privacy is protected.
About the framework
The Australian Government has developed a Framework to guide the secondary use of My Health Record system data for research, policy and planning purposes. This framework was developed in consultation with the public, healthcare providers, 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 are not permitted access to My Health Record system data for research.
- 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 data released for secondary purposes must not be sold.
New laws to strengthen privacy protections of My Health Record
On 26 November 2018, the Australian Parliament passed the My Health Records Amendment (Strengthening Privacy) Bill 2018.
The new laws meant that the principles contained within the Framework to guide the secondary uses of data will become law (within the My Health Record Rules). A Data Governance Board will be established to approve the release of any data in line with these rules.
The new laws also permanently remove the ability of insurers to apply for access to My Health Record data for the purposes of research.