Why So Many People Are Opting Out Of My Health Records

"So many risks", IT and privacy advocates say.

What you need to know
  • My Health opt out period starts July 16
  • Many people have concerns about privacy and security
  • Some say they are having issues opting out, with long phone wait times
  • Privacy experts say the system could be hacked

Your social media feeds might be clogged with people talking about the government's new My Health records system, and their plans to opt out of the controversial framework. You might not know, however, what it's all about and why your friends are so keen to  distance themselves from a system the government says will be a great advance to help doctors.

Many people were trying to opt out of the system on Monday, but were experiencing long phone wait times of more than an hour, and some were finding they already had a My Health record they didn't know about.

Doctors will have online access to your health records (Getty Images)

So what's going on? Here's what you need to know.

What is My Health?

My Health is a new database from the Australian Digital Health Agency to keep track of your health information, giving access to medical staff. The idea is your information won't get lost or overlooked if you move between different doctors or medical facilities, with the online records allowing staff to check on allergies, medication, medical conditions and test results.

The ADHA said the records system would also have benefits in emergency situations, such as if someone is found unconscious or cannot tell doctors the information they need.

Every Australian will automatically have a My Health record created for them unless you opt out, with the records to become available to doctors from November 2018. The records will be kept for 30 years after a person's death.

Can you opt out?

Yes, and that's why you might have been hearing a lot about the system recently. Every Aussie will have a My Health record created, but from Monday July 16 until October 15, you can choose to opt out of the system entirely.

You can also control what data is on the system, as well as which people can access it, if you want to have a record but have certain details left off it.

Click here for information on how to opt out.

Why are people opting out?

Many people have reported having concerns with all their sensitive health information -- which could include their mental health, sexually transmitted infections and a HIV status-- available on one central database. Following recent government privacy and tech bungles -- such as the 2016 Census, and Medicare numbers being sold on the dark web -- ordinary citizens, privacy advocates and tech experts have issues with their data being hacked or inappropriately accessed.

(Getty Images)

"There are so many issues. There are so many risks that, all combined, I'm like 'uhh no'. Simply, the Australian government cannot do computers," IT consultant and Electronic Frontiers Australia board member Justin Warren told ten daily.

"We have seen so many instances where government IT systems fail in predictable ways. The risk of exposure of your health information is so high. It’s very valuable info, cyber criminals will be coming after it and we’re building a dirty great database to put it in one place."

Warren said he saw the benefit in such a system giving important health information to doctors, but said the design was of great concern to him and many others.

'Major risk', 'little value'

Others, like the Australian Privacy Foundation, say My Health is just a "less reliable" version of what is already in use.

"Most clinicians already use an electronic medical record system. These can be improved by better communication between existing systems, not by introducing another, less useful, less secure copy in a system that has some of the hallmarks of a scheme designed for surveillance and less-controlled disclosure, rather than your healthcare," the APF said in a statement.

Dr David Caldicott, an emergency physician at Calvary Hospital, told ten daily the concept was needed but poorly executed.

"A guaranteed secure medical record, unavailable - ever - to third parties, would be phenomenally useful- especially for emergency departments, where circumstances often mandate fast medical decisions," he said.

"That is not what is on offer. Our family will be opting out."

(Getty Images)

Niki Jacobs, a physiotherapist, said she too had issues.

"I’m concerned and confused that they have given a timeframe for people to opt out- does that mean if they change who can access the records in a couple of years, and you didn’t opt out, now you have no say in them seeing your records?" she told ten daily.

What other privacy issues are there?

Warren and others also worry about how the health database may be used by not only hackers and criminals, but other government or public departments. Section 70 of the My Health Records Act 2012 said system operators can legally disclose health information if it is "reasonably necessary" to prevent or investigate crimes, or for "the protection of public revenue" -- but little has been detailed about what circumstances that would apply.

Warren also worried about how the health information would be shared with other government departments, raising the example of Centrelink's data-matching program to cross-check welfare claims against other government databases.

"I can easily see the Department of Human Services saying we will match Medicare billing info against social security to see if we should raise a debt," he said.

"The government has written a very broad law to allow those cases, and it allows a lot of other stuff through the gate."

Others have raised fears insurance companies could gain access to the health records, denying coverage or jacking up premiums based on private information. While the government has banned insurers from accessing My Health info, the sector is still pushing for permission and hoping the government will reconsider.

Considering the records are also to be held for decades after a person's death, advocates also fear how policy around access to the information may be changed by future governments.

What are ordinary people saying?

Many are reporting long waiting times on the phone to opt out of the My Health record system and said since they do not have the required documentation -- driver's licence or passport -- then they cannot opt out.

"I'm against anything that allows expansion of police state type powers - there is no goddamn reason law enforcement should be able to access someone's health data for crime prevention or 'revenue protection'," one woman told ten daily.

"This [government] cannot safeguard info. Too many breaches and inept with anything digital. They stuffed the NBN, Centrelink," another woman said.

One man tweeted that he tried to opt out of My Health on Monday, only to find he already had an account and could not delete it. Others have reported similar problems.

How can I opt out of My Health?

From the My Health website:

To opt out of My Health Record, you need to verify your identity.

You will need:
  • your Medicare Card, or Department of Veteran’s Affairs (DVA) card, and
  • one of the following forms of Australian identification:
    • your driver licence; or
    • your passport; or
    • your ImmiCard
If you have lost your Medicare card, or don't know your Medicare number, contact Medicare to find out your details.