The other data retention: Concerns over opt-out eHealth model

Australian Privacy Foundation says opt-out model for eHealth record not justified

The government's move to change the current national eHealth record rollout to an opt-out model has raised concerns among privacy advocates.

A 2013 review into the Personally Controlled Electronic Health Record (PCEHR) recommended changing from opt-in to opt-out in order to boost uptake to help the system to reach critical mass.

The government's response to the review included moving to rename the PCEHR to 'My Health Record' and trialling an opt-out approach.

"Doctors have indicated they’re much more likely to use the system if all their patients have a record," health minister Sussan Ley said earlier this year.

"We also need full coverage if we’re to cut down on inefficiencies created by not having one seamless records system, such as double ups with testing, prescriptions and other procedures."

However in a submission (PDF) to a Department of Health consultation, which closed late last month, the Australian Privacy Foundation (APF) argued that moving to an opt-out model is not justified.

The shift will only increase the risks to privacy that already exist from having "a high value repository of every Australian’s identity and health data".

"With respect to the proposed move to opt-out, we believe that there is a strong possibility that there will be a realisation amongst the population at large that the PCEHR is actually a thinly disguised national identity number attached to some health information, none of which can be relied upon because there is no way to medico-legally trust the information contained," the APF argued in its submission.

"[T]he identity data will be seen as very useful to the government, especially when cross-matched against internet and telecommunications metadata and other government databases," the organisation argued.

The government should either decommission the system or completely re-architect it "such that it is able to support major changes to existing health care work practices and is much better and more closely integrated with existing health record systems".

The shift to an opt-out model will have consequences for the risk profile of the eHealth program, the APF said.

"There needs to be evidence that the risks associated with this new model have been identified and suitably addressed," it argued.

"It should be noted that addressing risks in the system is likely to impact the fundamental requirements, the architecture, the design and the way in which users need to be informed and educated. Our concern is that the changes being considered to the PCEHR are being conducted in a piecemeal manner if not a vacuum of understanding or consideration of those risks."

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In its submission, the Royal Australian College of General Practitioners indicated it had some concerns about the potential opt-out mechanism for the record.

The RACGP said that it was important to make sure that people, particularly those who are socially disadvantaged and/or have poor health literacy, understand how to opt-out of the eHealth record.

"The ability to opt-out needs to be accessible on multiple platforms e.g. online, via phone or in person," the group's submission (PDF) stated.

"Patient education needs to include a greater focus on access controls and the ability for the patient to limit the number of providers who are able to view their record."

The RACGP said it supported the creation of a generic blank record for individuals, with a patient making a "positive choice" to activate it and allow health and Medicare information to be added to the record.

"This might be initiated via a web-based portal, during a visit to a nominated provider GP or via a Medicare office," the group said.

The provider would work with the patient to determine what information was added to the patient's eHealth record.

The government set aside $485 million for the eHealth record system in this year's budget.

Last month the Department of Health said 2.2 million people had signed up for eHealth records.

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