This page was last updated on 24 January 2019
My Health Record is governed by 3 pieces of legislation; The My Health Records Act 2012, My Health Records Rule 2016 and My Health Records Regulation 2012. The Healthcare Identifiers Act 2010 and the Privacy Act 1988 are also important for My Health Record.
Shortly after the start of the opt-out period in June 2018, the Federal Government announced they would move amendments to the My Health Record legislation. Those amendments would make it so that when someone cancels their record it would be deleted instead of archived by the government, and that any access to a person’s record by law enforcement or another government agency would require a court order.
Those amendments passed the House of Representatives, and along with a number of further amendments moved by the Government, Opposition and crossbench, were passed in the Senate on 15 November. On 26 November 2018, the amendments passed in the House and became law.
The legislation is called the 'My Health Records Amendment (Strengthening Privacy) Bill 2018' and you can find it and its amendments here: https://www.aph.gov.au/Parliamentary_Business/Bills_LEGislation/Bills_Search_Results/Result?bId=r6169
One of the amendments has been effectively implemented already, with the end of the opt-out period being officially extended to 31 January 2019.
Perhaps the most important change is that cancelled records will be fully deleted from the system and all backups. This feature has been implemented as of 24 January 2019.
Another change that was strongly asked for is better privacy protections for 14-17 year olds. The legislation now states that when a record holder turns 14, their parent will automatically be removed as an Authorised Representative that can view or manage the record, and the record holder would have to consent to them being added back. This has also not yet been implemented as of 17 January 2019, but the ADHA has said it will be shortly, after challenges are overcome like ensuring Authorised Representatives who should retain access, such as carers, are not automatically removed as well.
The other changes to legislation that have passed into law are to;
- make it clear that My Health Record data isn’t to be used for insurance or employment purposes,
- improve protections for those at risk of domestic violence,
- make it clear that the only government agencies that can access the My Health Record system are the ADHA, the Department of Health and the Chief Executive of Medicare,
- ensure the system cannot be privatised,
- enshrine in legislation the principles and governance structure in the Framework to guide the secondary uses of My Health data, and
- increase the penalties incurred for inappropriate or unauthorised use.
The Australian Digital Health Agency has provided a summary of the changes here.
Where can I find more information about My Health Record?
Visit the ‘Hub’ for the My Health Record webinar series to find out more about how it all works, what you might want to consider when making your decision, and where you can find more resources to help you think it through: chf.org.au/hub-my-health-record-webinar-series.
Of particular interest might be something we wrote for Croakey in June - An important overview of the pros, cons and questions about My Health Record.
You can find all publications and media releases by CHF on digital health here: https://chf.org.au/digital-health-media-and-publications
Health Consumers Queensland have put together a great resource that covers a lot of the key information you should consider: http://www.hcq.org.au/our-work/my-health-record/
The My Health Record website is a good resource, and the help line is available 24/7 on 1800 723 471. The help line can answer many general questions, as well as assist with opting out or making changes to your record if you already have one: https://myhealthrecord.gov.au
The Office of the Australian Information Commissioner (OAIC) also have a number of good resources on My Health Record, particularly on privacy and how to make a complaint: https://www.oaic.gov.au/privacy-law/other-legislation/my-health-records
State and territory health departments also have some further location specific information available on how My Health Record. While the number of hospital systems and health providers connected to the system is rapidly increasing, not all of those who are connected are able to access or upload the full range of information held in a person’s record yet. If you are interested in what the experience of using My Health Record will be like in your area, below are good places to start.