The deadline to opt out of My Health Record has been extended. So should you?

With debate about privacy concerns surrounding My Health Records continuing to rage, the Senate today voted to extend the deadline for Australians to opt-out to January 31.

The opt-out window was due to close at 3am Friday, which reportedly lead to significant delays on the dedicated phone line and errors on the website this morning, as people rushed to register their choice.

Roughly 1.147 million have so far withdrawn from the scheme, while 300,000 have signed up.

So why have people decided not to take part?

Let’s take a look.

What is My Health Record?

A My Health Record is an online summary of your health information that can be accessed anywhere, anytime by you and your healthcare providers.

It stores information, such as allergies, PBS medicines you are taking, medical conditions you have been diagnosed with and pathology test results like blood tests.

Supporters argue it’s a sorely needed feature that will help plug gaps in a fragmented health care system, and therefore improve patient care and even save lives.

My Health Record is an online summary of your key health information. This year, you will get a #MyHealthRecord, unless you opt out by 15 November 2018. Learn more: https://t.co/pbroNYTNkV pic.twitter.com/twK3RH5Hmc

— My Health Record (@MyHealthRec) October 15, 2018

President of the Australian Medical Association, Tony Bartone, is among those in favour of My Heath Record: “It will assist in reducing unnecessary or duplicate tests, provide a full PBS medication history (thus helping avoid medication errors) and be of significant aid to doctors working in emergency situations,” he told The Guardian.

The scheme has actually been operating for six years on an opt-in basis – because of this, six million people currently have a My Health Record. But on January 31, that changes: a record will be created, by default, for every Australian who has not yet registered, unless they choose otherwise.

So, why are people opting out of My Health Record?

The criticism of My Health Record largely centres around two issues:

The type of data stored.

As the Office of the Australian Information Commissioner notes, “The My Health Record system contains an online summary of a patient’s key health information; not a complete record of their clinical history.”

This is chiefly because patients can control what data is stored, either by changing their preferences or asking their doctor not to upload certain information.

Legal experts Katharine Kemp, Bruce Baer Arnold and David Vaile argued via The Conversation, that the data is therefore not necessarily reliable: “If, for example, a doctor were treating a child in an emergency, the doctor could not rely on an MHR to know what medications the child has been prescribed up to that date. In an emergency, an unreliable record is a distraction, not a help.”

The security of that data.

Storing health records digitally in a central location undoubtedly comes with cyber security risks. Critics argue that My Health Record could become a target for hackers and make users vulnerable to identity theft.

Your record is also available to a wide range of health professionals, including doctors, pharmacists, physiotherapists and nurses. And as Kemp, Arnold and Vaile note, it doesn’t record which individuals have logged in, only which organisation they belong to, which means it’s not possible to know precisely who has accessed your information.

Something people need to weigh up RE: My Health Record.

I was told by a surgeon I’d started talking to last week, that he’d found my personal details/test results on the hospital system. This is within 2 days of conversation on a dating app.

— ✍???? (@ellecia) July 16, 2018

It’s worth noting that individuals can set certain controls on who has access to their data and set restrictions on the types of data that will be included by altering their preferences via their MyGov account. This includes the option to set a passcode that applies to their entire record or certain parts of it.

Yet in case of an emergency all these MHR privacy restrictions can be removed by clinicians for a period of five days.

While you can cancel your record (that is, close access to it) at any time after the January cut-off date, as it currently stands the Government will continue to store it until 30 years after your death. That is one of the issues due to be debated in parliament.

If you are trying to opt out of having a My Health Record and don’t wish to wait for phone assistance, you can opt out online: https://t.co/tdCKMnON7n

— My Health Record (@MyHealthRec) November 13, 2018

How do you opt out of My Health Record?

If you do not wish to have a record created for you, you must complete the online process on the My Health Record website by January 31, 2019.

You will need to verify your identity, and provide personal details such as your name and date of birth, and must have your Medicare or DVA card and one form of identification (namely your driver licence, passport or ImmiCard) ready.

If you have children under the age of 18 listed on your Medicare card, you can also opt out on their behalf. Children over the age of 14 can also opt out independently.