How To Opt-Out Of My Health Record

How To Opt-Out Of My Health Record
Image: Australian Government

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:

  • allergies
  • 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.

How to opt out from My Health Record [Australian Government, via ABC]

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    • Click the first link in the article that take you to the My Health Record site for the Government position on the system (which is, of course, all benefits and no downsides).

    • Patient information is unified and complete in a single source of truth (based on correct input) and that its able to be accessed by any state health care professional to provide informed treatment in the event of a health emergency.

      Great if your currently being treated for a risky health issue, or have higher risks from complications due to medication side effects, allergies, infections you wish doctors would know immediately… its either this, or pray in the event of an emergency that your doctor can be reached cause the hospital only gets updated records if they are sent by another system (or by email) that may even be far less secure anyway (for example Argus)

      Security and patient wise – the system is far greater than what they got currently which is a mish-mash of technology scattered throughout public and private healthcare currently, standardised patient records keeping and gives the patient controls over who can access the records (which you don’t have now) and has strong audit trails and provides read and write receipts for all data.

      It however is not doing a good job at communicating the benefits of this program… considering all the news today was talking about today was about opting-out. Rather then telling people what their choices are, and what benefits they gain in digital healthcare future.

      Digital health is saving lives in rather interesting ways (reduce infections, reduce medication dependency, improved out-patient health, less injurys) and that is all based on data and patient monitoring while in hospital care and out patient care. Its brilliant.

      However I am not at a health risk, to require this level of hospital/doctor/radiology/pathology care, and would choose to opt-out until an event that would require it (I would opt in to treat cancer) at least at this early stage.

  • Might not want to rush with Opting Out if your concerned about privacy, wait to see what the white hats say about it. Like why does the form have Google Recaptcha, when its not privacy statement it shares no data overseas?

  • The Federal Department of Health have stated that if you opt out now (which has the October deadline), you can opt in at any time in the future even after opting out now. So, if in the future you can see real advantages for being on their database, and you are convinced that there are no risks of (a) their database being hacked, or (b) your identity stolen, and (c) that they don’t let insurance companies have access to your most private information, then you can opt in whenever you like.

    For me, I’ll opt out now and monitor their behaviour over time before making a decision to opt in.

  • I already had a record created a while ago, so no option to opt-out.
    I’ve been going through it today locking down all of the records and document access.
    Yes, it was a massive pain in the arse to do due to the terrible interface…

    I found an option at the bottom of the ‘Profile and Settings > Profile’ page where you can cancel your registration.
    How do I cancel my registration in the My Health Record system?
    You can choose to cancel your My Health Record at any time. If you choose to do this, healthcare providers involved in your care will no longer be able to access and upload information to your My Health Record and your information will no longer be available in a medical emergency.
    The System Operator is required to retain the information in your My Health Record and will only use or disclose this information if authorised by law. Documents in a cancelled My Health Record will continue to be held in the My Health Record system but will not be available for viewing by anyone. Documents passed on to Healthcare Provider Organisations will continue to be held by them in accordance with the organisation’s rules and practices.
    You can choose to register again at any time.

    So it looks like all of the excitement over this is pointless as you can just go and set all your documents to a ‘Removed’ status then shout it down…


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