What you need to know about My Health Record
The opt-out period for My Health Record has been extended until 31 January 2019.
Update: The legislation that governs My Health Record has changed since the opt-out period began in July 2018. Perhaps the most important change is that cancelled records will be fully deleted from the system and all backups. This feature has not yet been implemented, however, the Australian Digital Health Agency (ADHA) has assured us that it will be before the opt-out period ends.
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, 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.
These and other changes are in the ‘My Health Records Amendment (Strengthening Privacy) Bill 2018‘ that was passed by Parliament in late November 2018. The Australian Digital Health Agency has provided a summary of the changes here.
The other changes 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.
Health Consumers NSW supports all health consumers to make informed decisions about their healthcare. My Health Record is a significant change in the way healthcare is delivered. We believe there is no one-size-fits-all recommendation about My Health Record.
This page provides a summary of key points consumers might consider when making the decision whether to opt out or not, references to further sources of information, and some questions that may guide consumers through the decision making process.
We hope this information supports your decision-making about My Health Record.
- What is My Health Record?
- How do you decide whether to opt out or not?
- Some factors to consider
- Security settings and privacy
- Your ability to maintain an online record
- Young people
- Domestic and family violence
- Sensitive health issues or life circumstances
- Government access to your records
- Secondary use of data
- Those most likely to benefit
- How binding is my decision?
- There is so much information about My Health Record. How can I be sure that what I’m reading is reliable?
- Making a decision
- How do I opt out?
- Further information
Source: The information about the My Health Record in this part of our website has been compiled by our friends at Health Consumers Queensland and was first published on their website here. We would like to thank them for allowing us to reproduce the information here.