Unless new legislation is passed today, Australians will no longer be able to opt out of the government's My Health Record from tomorrow. Planned as an "online summary of your health information" that "can be accessed at any time by you and your healthcare providers", there are no guarantees about how your data will be used by said providers. Here's what you need to know about MHR and how to opt-out if privacy is your main concern.
What is My Health Record?
From the government's website:
My Health Record is an online summary of your health information. It can be accessed at any time by you and your healthcare providers.
This means that, whether you’re visiting a GP for a check-up, or are in an emergency room following an accident and are unable to talk, healthcare providers involved in your care can access important health information, such as:
- medicines you are taking
- medical conditions you have been diagnosed with
- pathology test results like blood tests
- This can help you get the right treatment
Government-provided materials also elaborate on who has access to your records and the control you have over it:
You can choose to share your information with the healthcare providers involved in your care.
By allowing them to upload, view and share documents in your My Health Record, they will have a more detailed picture with which to make decisions, diagnose and provide treatment ... you can also choose to manage aspects of your My Health Record yourself. For example, you can:
- add notes about your allergies and adverse reactions, an advance care plan or custodian details
- set access controls to restrict who can and can’t see your health information
- review your own health information, seeing everything your healthcare providers can see
- set up SMS or email notifications so you know when a healthcare provider first accesses your record.
If you'd like more information about the privacy implications of MHR, the ABC's Ariel Bogle has penned an in-depth FAQ.
How do I opt-out of My Health Record?
Considering how much of a mess myGov worked out to be, no one would blame you for wanting to opt-out of My Health Record, despite the government's assurances that it has "various safeguards in place to protect your information, including secure login, firewalls and encryption" — all of which are the very minimum one would want from such a system.
Once the opt-out becomes available on July 16, you can either go the online route by visiting the My Health Record website or call 1800 723 471 and do it over the phone. Bogle notes that a mail-in form will also be available.
How long do I have to opt-out?
Here's the bad news: the opt-out period is only for three months, starting from July 16 and ending November 15.
What if I miss the deadline? What are my options?
If you don't opt-out by November 15, then your only option is to cancel your record instead. However, "cancel" does not mean "delete" — your record could stay in the system for "a period of 130 years after the date of your birth" and it can still be accessed under certain circumstances:
When you cancel your record, it means that:
- Healthcare providers will not be able to upload documents to the record, or access the record - even in an emergency.
- You, or your representative can only access the record by making a request to us.
- Once your record is cancelled, it will be retained for a period of 30 years after your death or, if the date of death is unknown, for a period of 130 years after the date of your birth.
- Your My Health Record may be accessed by us for the purposes of maintenance, audit and other purposes required or authorised by law.
Basically, if you don't want any sort of record, you should opt-out before November 15.
It will benefit some, sure. But the privacy risks far outweigh the benefits for most.