My Health Record: You Have Three Months to Make a Decision That Lasts 100 Years, So Read This

Here’s what you need to know if you’re under 18.

Update (01/08/18): Health Minister Greg Hunt has announced the government will allow Australians to have all information stored in their My Health Profile deleted, even if they do not opt out prior to 15 October. The original article is as follows.

The year is 2118. All human dialects have been replaced with a singular language comprised entirely of blinks. Intergalactic Grand Empress Blue Ivy Carter-Knowles-Jenner-Johnson-Bregoli IV has declared Akoin the global currency. The 103rd season of Rick and Morty is streaming directly into our brains. And My Health Record still has your personal medical data from 2018 filed away in its database.

Though much of the 22nd century I’ve described is inevitable, you can make a change that will alter your future in at least one way. And no, we’re not talking about the landslide election of Blue Ivy the Fourth.

As of this week, Australians have three months to opt out of the government’s digital database My Health Record, which tracks and stores your medical history, from medication to allergies and anything else that might be uploaded by your doctors. You can opt out between now and October 15, but after that point, if you decide to cancel your account, any pre-existing data will be held for either 30 years after your death or 130 years after your birth (if they don’t know when you died).

Truly, Rick and Morty really did say it best…

Wait, what is My Health Record?

In 2017, the federal government announced plans to expand My Health Record to ensure all Australians had a listing in a national digital database by 13 November 2018 (excluding those who opt-out).

As the official website describes it, "when you have a My Health Record, your health information can be viewed securely online, from anywhere, at any time—even if you move or travel interstate."

This data can be accessed by and shared between medical professionals, and all of Australia’s peak health bodies say it will improve the quality of individual Aussies' health care.

For instance, imagine going to a new doctor and them immediately having the whole history of your prior care in front of them, without you having to explain or get test results and x-rays awkwardly sent over first. Same goes if you’re rushed to the emergency room, or you can’t speak English, or you can’t explain your symptoms.

Considering almost 230,000 Australians wind up in hospital on account of medication errors, there is a hope that My Health Record will bring that figure down.

Sounds pretty sweet. What’s the issue?

Well, privacy advocates are warning that My Health Record contains too much sensitive information, and it’s neither stored nor shared in a manner that puts your privacy first, despite the Australian Digital Health Agency’s (ADHA) claims of sophisticated cybersecurity and regular privacy auditing.

In fact, a cybersecurity expert from the University of Sydney told the Guardian that a hack of the centralised database is "inevitable". Also, if your record is ever downloaded or copied by any medical provider, there’s no way of knowing how it’s being maintained or kept secure, or if it leaks somehow. (Though, the ADHA maintains practitioners are still subject to Australian privacy laws.)

That isn’t just concerning to those who want to keep certain medical diagnoses private, but anyone wary of their private data falling into the wrong hands.

Yikes. If I want to opt out, what do I have to do?

You have until 15 October 2018 to opt out, and you can do so online. Otherwise, give 1800 723 471 a ring, or grab an opt-out form from select Australia Post outlets.

If you’re under the age of 18 and listed on your parent’s Medicare card, they can opt out on your behalf, so definitely speak to your mum, dad or guardian if you don’t want your info held.

If you’re over the age of 14, you can still opt out individually online. You’ll just need your Medicare number handy. And voila. No record for you.

Uhh, I think I’m already in the My Health Record database. Is it too late for me?

Not at all. If you want to cancel your record, you can do so here. However, whatever information is already in there remains until 30 years after your death, or 130 years after your birth (if they don’t know when you died).

What happens if I decide I want to cancel My Health Record after 15 October 2018?

So, say you go to the doctor on 16 October and they upload some details about your visit to My Health Record. One day later, you may feel a bit weird about it all and decide to cancel your record. However—and we apologise for repeating ourselves, but it’s really important you understand this—whatever information is already in there remains until 30 years after your death, or 130 years after your birth (if they don’t know when you died).

Can I take any actions after 15 October 2018 to maintain my privacy?

My Health Record at least allows you to set access controls to restrict who can and can’t see your health info, and you can also set up SMS or email notifications to let you know when your data is being accessed. You can also ask doctors not to add certain information to your record, or remove them individually.

This won't be an easy decision, so we encourage you to have a good think and discuss your options with your parents, guardians and even trusted doctors. Ultimately though, if you're over the age of 14, the decision is yours to make. We wish you luck on your journey.

Header Image: YouTube.com/My Health Record