Why I’m Opting Out Of My Health Record (And You Should Too)

It will benefit some, sure. But the privacy risks far outweigh the benefits for most.

“I want to make sure we bring consumers with us in the e-health journey by adopting an ‘opt in’ model – allowing them to choose when to sign on,” said Nicola Roxon, about the then-Labor government’s rollout of a voluntary, shared digital health record for all Australians.

“I believe that the benefits of giving the Australian public the choice as to whether they participate will be key to the successful implementation,” Roxon continued, adding: “I think moving to an ‘opt out’ position would be a serious mistake.”

Seven years and a change of government later and that “serious mistake” has become a reality: the Turnbull government, under federal Health Minister Greg Hunt’s leadership, will now automatically opt everyone into having a digital health record by the end of the year unless they actively withdraw consent during a designated three-month opt-out period that started on Monday.

[referenced url=”https://www.lifehacker.com.au/2018/07/psa-you-can-opt-out-of-the-governments-my-health-record-starting-tomorrow/” thumb=”https://www.lifehacker.com.au/wp-content/uploads/sites/4/2018/07/myhealthrecord-410×231.jpg” title=”How To Opt-Out Of The Government’s My Health Record” excerpt=”July 16 marks the start of the three-month period in which Australians can opt-out of the government’s My Health Record. Planned as an “online summary of your health information” that “can be accessed at any time by you and your healthcare providers”, there are no guarantees about how your data will be used by said providers. Here’s what you need to know about MHR and how to opt-out if privacy is your main concern.”]

Australians’ trust has been betrayed by this government’s move away from an opt-in model to opt-out. While Hunt’s intention to have everyone automatically given a record is well-meaning, it’s not good enough to simply adopt an opt-out model to fix lacklustre sign-ups.

For myriad reasons I will be opting out of having a health file, known as a My Health Record, and you should do the same, depending on your circumstances.

My decision to opt out comes after consulting several healthcare professionals, privacy and computer security experts, the government and patients who stand to benefit from having a record.

I concluded that any benefit I would personally get from having a digital record would be negligible compared with the risks of it being accessed by unauthorised parties.

One of the main reasons I have decided to opt out is my lack of confidence in the government to secure its citizens’ data, and several breaches where information hasn’t been sufficiently secured.

In one such breach, one in 10 private health records were exposed by the Department of Health after the agency uploaded what it thought was de-identified Medicare Benefits Scheme and Pharmaceutical Benefits Scheme data for research purposes.

Further, the fact a quarter of Australian data breaches from February 22 to March 31 reported to the federal Privacy Commissioner involved healthcare providers has given me no confidence the system will be secure at its weakest point – GPs’ offices.

Here are some of the other issues with the system:

  • While PINs can be placed on individual records, these can be broken in “emergency” situations using an override function, or, as security experts fear, by unauthorised criminals.
  • Up to 900,000 health professionals will be able to gain access to an individual’s records but there is no guarantee that the security of their computers will be kept up-to-date.
  • With access to a computer that can retrieve My Health Record data, an unauthorised party could gain access to any Australian citizen’s record (there have been breaches where Medicare details have been up for sale on the dark web).
  • There are likely to be instances where a record is uploaded without your genuine, informed consent. Already, tick boxes are being spotted that state: “Do not send to My Health Record”. These boxes should instead ask: “Do you want this sent to My Health Record?”
  • Centralising health data increases the risk an unauthorised party can gain access to it. This is because if a hacker wanted to target you now, they would have to know who your GP is to access your data.
  • The system behind securing the records, myGov, has been proven to lack proper security protections in the past. While many of these protections have since been implemented, concerns remain.

There are, of course, situations where having a shared digital health record will be useful for some.

If you suffer from chronic illnesses, have allergic reactions or anaphylactic shocks, and otherwise need information to be conveyed to a medical professional when you are unable to, then the benefits will outweigh the risks in a situation of life or death.

But if like me you are concerned, you should opt out.

Alternatively, you should subscribe to access notifications, set up PINs, and restrict access to files you do not wish to be accessed by all and sundry. Then, at every interaction with a health professional, be prepared to ensure you tell them whether you want your record uploaded or not.

This article originally appeared in Digital Life, The Sydney Morning Herald’s home for everything technology. Follow Digital Life on Facebook and Twitter.

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