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A health record for all to share

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Patients will have full access to use and share their electronic health record as they see fit, including sharing with retailers and IT developers, under a radical proposal outlined by Health Minister Sussan Ley.

Ms Ley said it was time Government “got out the way” and allowed consumers to have open-source access to all their health data, enabling them to use and share it as they liked.

“What if we, as Government, got out the way and gave consumers full access to their own personalised health data and full control over how they choose to use it?” she said. “It’s a revolutionary concept in health – but it shouldn’t be – given it’s already happening with industries like finance across the globe,” the Minister told the National Press Club.

But a parliamentary committee on human rights has already raised concerns about possible privacy breaches around the storage and use of health records uploaded to the central database of the MyHealth Record system.

The committee, chaired by former Howard Government Minister Philip Ruddock, said the proposed system raised significant privacy concerns – particularly the proposal that a person’s electronic health record be automatically uploaded to the database unless they actively opted out of the arrangement.

Mr Ruddock questioned whether such an approach justified the potential breach to privacy.

He told Parliament that there need to be a substantial concern, not simply pursuit of a desirable outcome, to justify limiting human rights.

Ms Ley said consumers already had control of personal data in industries like finance and banking, and patients should be similarly able to use their personal health information to create a portfolio of products and services specifically tailored to their health needs.

“What if you, as a consumer, were able to take your personal Medicare and Pharmaceutical Benefit Scheme data to a health care service; to an app developer; to a dietician; to a retailer and say how can you deliver the best health services for my individual needs?

“Why can’t we allow someone’s doctor to use an app developed on the free market to monitor their patient’s blood pressure at home following an operation, or keep a real time count on their insulin levels?

“The answer is – we can, and allowing consumers open-source access to their health data is the way to do it,” the Minister said.

Ms Ley said this was an area she was “keen to explore” as a way to give patients greater control over their health.

Adrian Rollins