Last Thursday I learned that the Turnbull government will collect all my heath data and form a digital health record about me, accessible by any doctor, hospital or medical professional across the system. This will happen by the end of the year unless I opt out. The opt-out period started on Monday and runs three months.
On Friday, I learned the head of the Prime Minister’s department, Martin Parkinson, said that some public servants had been sanctioned for an “extraordinary lapse of security” over the filing cabinet full of thousands of pages of secret cabinet documents that turned up at a second-hand furniture shop in the nation’s capital. When the security breach was uncovered by the bloke who bought the cabinet, Malcolm Turnbull described it as a “disgraceful, almost unbelievable act of negligence”.
I will opt out of a digital health record. And here are a few more reasons for concern.
It’s passing strange that, until now, the new opt-out system has been so far under the radar. I digest lots of news, use social media and so on. Yet I didn’t learn about this from the Turnbull government, when it set aside $110 million in the 2017 budget to move to an opt-out system. That line item didn’t rate on the Richter scale of budget news. Neither did I learn about the new opt-out deal from the Australian Digital Health Agency, which will administer this scheme. I don’t recall any big information campaigns, as governments like to call their saturation media advertisements when they have an exciting policy to sell. The government spent millions explaining its intended higher education changes, and millions more touting its innovation policy.
Instead, I heard about the opt-out system from a short news story on ABC radio. And that’s a shame because, as ADHA boss Tim Kelsey told the National Press Club in May, this is a seismic shift in how our health information will be collected and shared.
“This is the power of people rising up to take control of their health information and using safe and secure technology to make a difference,” Kelsey said, describing how every resident in one nursing home in the NSW Riverina town of Berrigan had a My Health Record. Except that people cannot genuinely exercise power about their private health information if they don’t know about the system or opting out of it.
On that score, it’s worth asking why, in the opt-out trials involving a million people, only 1.9 per cent chose to opt out. Is the number so low because most people didn’t know about opting out? Or because they were so convinced by the benefits they chose not to? Kelsey told The Australian on Monday that he didn’t know the motivating factor.
Another reason I will opt out: if this is really about empowering us to make choices about our health record, it should remain an opt-in system and the government should fess up to the risks, not just laud the benefits. Under the old opt-in system, more than 5.9 million Australians did just that, creating their digitally accessible health record. That’s choice. Millions more will have one by the end of the year, many by default rather than by conscious choice. Either they won’t know about opting out within the three-month period by October 15 or they won’t opt out because it’s like changing telcos and banks: it requires engagement with a bureaucracy that most of us avoid.
At the National Press Club, Kelsey set out the system’s benefits. A shared database of health information from prescriptions to pathology to X-rays and consultation notes will assist old people, especially those with dementia. It will help patients with acute health problems too, like a little girl he mentioned with two holes in her heart who already has a long and complex record of clinical notes. Her father is grateful for My Health Record.
Most peak bodies trumpet the benefits of My Health Record, too, but we are entitled to wonder why doctors need incentive payments from government to be part of this digital system if it’s so good. Isn’t that a conflict of interest?
Despite more coverage this week, I’m still waiting for a complete summary from those responsible for this system of the pros and cons of a database of information of private and sensitive health issues. The biggest problem is that data collection and sharing carries with it inherent risks, most obviously from hacks and unauthorised sharing by bad actors or stuff-ups. So soon after massive privacy breaches at Facebook, and with increasing focus on whether privacy settings are useful at all, is it too much for the people to expect full disclosure of costs and benefits from a government we elected and a bureaucracy we fund?
You don’t have to believe in conspiracies about the state digging for details about us. You only need to consider the history of a few bad people, or inevitable human error, causing our most private information to be hacked into, leaked and shared with people with no right to it. Remember how private information was hacked from the dating website Ashley Madison and shared?
We’re told that the database has 24/7 military-grade security. But that doesn’t guarantee against stuff-ups or a very smart hacker. In 2016 the Queensland Crime and Corruption Commission revealed that public officials unlawfully accessed government databases and that 11.5 per cent of investigated cases involved these kinds of privacy breaches. One police officer was guilty of 50 hacking offences.
Remember the scandal at the Australian Taxation Office last year when 12 staff members were sacked for unauthorised access of private tax records? Just last year, criminals on the dark web were found to be selling details from Medicare cards for $30.
In his new book, The Classical Liberal Case for Privacy in a World of Surveillance to be published later this year, RMIT senior research fellow Chris Berg mentions these and other privacy breaches that should make us think more about My Health Record.
As a safety precaution, you can set up an access code for certain people to access any or all of your digital health record. Yet in opt-out trials less than 0.1 per cent of people did that. Why? Because they were happy to share with all health providers across the health system? Or because it’s a bureaucratic nightmare constantly to monitor each additional health record to decide who has access to it and whether to add it to the database? Kelsey says he doesn’t know.
I know that most of us can barely find time to see a GP when we need to, let alone work out and monitor who gets to see what from a digital health record.
Kelsey said last May Australia would be the first country to provide a mobile health record to every citizen, unless they chose to opt out. He said the opt-out system would ensure faster implementation. But shouldn’t we be concerned about government, bureaucrats and sections of the medical profession rushing to cement a change of this magnitude that collects and shares our health data?
In 2010, Facebook’s Mark Zuckerberg claimed that privacy is no longer a “social norm”. Maybe he’s right about sharing photos and random thoughts on social media. But when it comes to sharing our health records, privacy still matters.
janeta@bigpond.net.au
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