Care.data was cancelled because drug and insurance companies were able to buy patient data

This article is more than 2 years old

This article is more than 2 years old

Australia’s impending My Health Record system has a privacy framework that is identical to a failed system in England that was cancelled after it was found to be selling patient data to drug and insurance companies, a British privacy expert has said.

My Health Record is a digital medical record that stores medical data and shares it between medical providers. In the UK, a similar system called care.data was announced in 2014, but cancelled in 2016 after an investigation found that drug and insurance companies were able to buy information on patients’ mental health conditions, diseases and smoking habits.

The man in charge of implementing My Health Record in Australia, Tim Kelsey, was also in charge of setting up care.data.



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Phil Booth, the coordinator of British privacy group Medconfidential, said the similarities were “extraordinary” and he expected the same privacy breaches to occur.

“The parallels are incredible,” he said. “It looks like it is repeating itself, almost like a rewind or a replay. The context has changed but what is plainly obvious to us from the other side of the planet, is that this system seems to be the 2018 replica of the 2014 care.data.”

My Health Record, which is intended to provide details of a patient’s medical history easily to doctors who have not previously treated them, has the backing of all of Australia’s peak health bodies, including the Australian Medical Association, the Royal Australian College of GPs and the Pharmacy Guild of Australia.

But privacy advocates have raised concerns about the security of information, particularly for those with conditions that might result in discrimination, such as mental health problems or HIV.

Australians have until 15 October to opt out of creating a My Health Record – if they do not, a record will be created automatically. After that, patients can opt back in at any time, or cancel their record if they have one.

A spokesperson for the Australian Digital Health Agency, which is implementing My Health Record, said a range of safeguards existed to stop patient data being given to companies.

“In a number of cases, the My Health Records privacy framework is more restrictive that the Privacy Act. This was a deliberate policy decision to reflect that the My Health Record would become a relatively rich data source and, as a result, deserves increased protections.”

Australians can elect for information not to be used for secondary purposes, and the website says that patient data “cannot be used solely for commercial and non-health-related purposes”.

But Booth said the same protections existed in Britain and did not work.

“We had the same promise, exactly the same promise,” he said. “Not used for solely commercial purposes. It’s bullshit.

“If you have a commercial company that also works for Australian healthcare services, they then avoid the purely linguistic safeguard of ‘solely commercial’. That has been used by information intermediaries over here, and they then service pharmaceutical companies. It’s just smoke and mirrors.

“They will say it hasn’t happened yet and make all sorts of promises, but you have to parse it knowing that they want to use these loopholes.”



In Britain, all patient data that was shared with companies was anonymised, but critics argued that companies could identify individuals by matching the anonymised data with other patient data.

“You may be able to identify people if you had a lot of data ... But I think it is a small, theoretical risk,” an administrator of care.data told the Guardian at the time.

The Digital Health Agency spokesperson said this could not happen.

In Australia, the government has so far released only a framework on how secondary data can be used under the system. A full implementation plan will be developed in the second half of this year.

Booth said the rollout of My Health Record should be paused until this plan was fully released.

“The question must be asked: why aren’t the Australian public being told about secondary uses? Any anonymised data [being released] is inherently identifying.

“There has to be a pause. It is absolutely fundamental. This three-month window is frankly ludicrous and is an arbitrary thing. Over here [in the UK] there was a pause. Care.data was paused in late February 2014 and it never started again once people actually looked into what it was doing.

“I can say that any safeguards that are promised will be routed around or ignored. It’s not worth the paper it’s written on, on the basis of the evidence of what happened in England.”

The Digital Health Agency said it would not pause the rollout, but “no information will flow [under the secondary data sharing] until these processes are established and it will be likely to be 2020 before that commences.”

It said health, travel and life insurance companies could not access the My Health Record system, that data could not be used to assess eligibility for benefits related to Centrelink or the ATO, and that My Health Record data released for secondary purposes must not be sold.