My Health Record opt-out debate is getting silly but government is at fault

Neither government nor the medical lobbyists have noticed that they've lost the public's trust when it comes to safeguarding data. They need to listen, and earn that trust back.
Written by Stilgherrian , Contributor
(Image: Getty Images/iStockphoto)

"Gawd. This debate is becoming stupendously ridiculous," tweeted Dr Norman Swan on Friday. He's the presenter of the ABC's Health Report and one of Australia's most respected broadcasters.

"It's the most important piece of health infrastructure in a generation and it's been hijacked by the privacy ideologues. Everyone retains the right to choose. Get over it and stay in!! Can't believe it," he said.

Swan is right. The debate over whether or not to have your health records uploaded to a central digital repository has indeed become stupendously ridiculous. But not for the reasons he thinks.

Yes, some of those opting out are making daft claims. We've seen, for example, the curious argument that because My Health Record might perpetuate incorrect data, and presumably because enforcement agencies can gain access, its "sole purpose" is to be a tool to make Australia into an autocratic police state. Yeah nah.

There were also overblown concerns about Google's reCAPTCHA being used.

But there are genuine concerns out there. People don't fear that My Health Record won't be useful. They're worried that their medical data might be misused, and they're not satisfied with the answers they're getting.

The Australian government has lost the public's trust when it comes to protecting their data. That trust needs to be earned back.

The name-calling of "privacy ideologues" and the we-know-better-than-you suck-it-up arrogance of some in the medical professions are at the very least unhelpful. Just as unhelpful are the ham-fisted "reassurances" of health minister Greg Hunt.

"One of the thing's that's happened is there's been a number of statements which have been incorrect," Hunt said on ABC Radio on Wednesday.

"I would gently correct those, the statement about access by law enforcement bodies, incorrect. The statement about the ability for anybody to access it, incorrect. The statement about the ability to override the system, incorrect."

But Hunt hasn't provided any evidence to say exactly why the statements, which he doesn't cite, are incorrect. It's just hand-waving.

"The [Australian] Digital Health Agency [ADHA] has again reaffirmed today that material, which is the case for every medical record in the country, can only be accessed with a court order," Hunt said, but that's not what the law says.

Hunt says people's privacy settings can't be overridden, but the AHDA says they can.

"If you have set an access code for your My Health Record and there is a serious threat to your life, health, or safety, emergency access to your record may be provided," says the ADHA website.

Hunt says that can only happen in a "deep, profound medical emergency", but again the ADHA says otherwise.

"Emergency access may also be granted to lessen or prevent a serious threat to public health or safety. For example, access to your My Health Record may help identify a source of dangerous infection, when you're in a hospital, and prevent it from spreading."

One could be forgiven for thinking the minister doesn't quite understand how any of this works.

Reassurances that people's digital medical records can be kept secure have been equally pathetic.

Claire Coulton, a spokesperson for Royal Far West health and education services, told ABC News: "The security of a paper health record is no more secure than a digital one. Someone could break into a clinic in the CDB tomorrow and steal hundreds of thousands of medical health records there."

I could discuss how silly that argument is, but I'm too busy laughing. Meanwhile, Prime Minister Malcolm Turnbull has been invoking filing cabinets.

Meanwhile, while the government and medicos have been telling us anecdotes about how a health record might have made things easier in this or that specific circumstance, there's been a remarkable lack of hard data.

Hunt makes the point that My Health Record has been around for six years. There was a trial involving 1 million people, and there are now 6 million records in the system. So surely there's some hard data on how healthcare costs have been cut, and health outcomes improved? No?

Apparently not. In a piece titled Top 10 most awkward questions about the MHR, The Medical Republic reported that "you can't easily get to a short and precise description of what the project is meant to achieve".

"The problem of course, even if the project had well-defined goals and KPIs ... is measurement. No one is measuring any of this in relation to this project. This [is] partly because these things are so complex to report and measure anyway. The point is we haven't set proper targets and so we aren't measuring progress or success."

Given that the medical profession prides itself on its scientific credentials, that seems a curious omission.

The biggest mistakes of all, in my view, is that the My Health Record project fails to follow contemporary privacy practices. The most notable are the fundamental breach of trust in flipping the system to opt-out, and retaining data even when a user wants to delete their record. Such behaviour would be straight-up illegal under Europe's General Data Protection Regulation (GDPR), for example.

Stephen Easton sums that up well at The Mandarin, a site that covers Australian government policy, programs, and public projects.

"The e-health backlash shows that a lot of people now disagree with the government's view that the records are in their interests. Worries about privacy, information security, and the medical utility of the revamped records have grown considerably since four years ago, when an external review panel told then-Health Minister Peter Dutton there was strong public support for the e-health system, and it was clear that it would change to an opt-out model," Easton wrote.

"The sudden rush for the exit in just the first few days of the My Health Record opt-out period -- and a clear sense of indignation among many critics at the presumption that they would want to have an enduring national e-health record automatically created, with some problematic terms and conditions -- suggests a miscalculation."

He's right. But so far the government seems to think that drowning out the critics is the way to go, rather than listening to the genuine concerns and building a better system.

Update at 4.59pm AEST, July 21: Clarification of which daft claim was being rejected.

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ADHA pins My Health Record opt-out issues on users with incorrect information

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Tens of thousands opt out of My Health Record, but can Immigration and local councils view the rest?

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Less than 2 percent of My Health Record trial users opted out

Perhaps more worryingly, the use of privacy controls is sitting under the 0.1 percent mark.

My Health Record opt-out period from July 16 to October 15, 2018

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