‘Worse than My Health Record’: Vic’s data sharing bill passes lower house

Legislation allowing the Victorian government to create a centralised health database with no ability for citizens to opt-out has sailed through the lower house despite privacy advocates labelling the proposed scheme “worse than My Health Record”.

The Health Legislation Amendment (Information Sharing) Bill 2023 passed through the Legislative Assembly on Thursday afternoon after a brief debate, with the only amendment moved by the Opposition voted down.

Liberal MP Emma Kealy on Wednesday sought to have the bill withdrawn and redrafted to include an opt-out provision, arguing the government had failed to take on concerns that were raised when the previous version was first introduced in 2020.

The bill, which was revived earlier this month, aims to improve health outcomes by centralising medical records with a system that health services can use to share information, like is the case in New South Wales and Queensland.

Victorian Parliament

The system – expected to contain prescribed medicines, discharge summaries and other health information from the last five years – will be used by public hospitals, the ambulance service, community health centres and other public health services.

But unlike the federal My Heath Record, the state-based database will not give patients the option to opt-out, nor will consent be sought before data is shared, resulting in widespread criticism from legal, civil and digital rights organisations.

Ms Kealy on Wednesday said the absence of “an opt-in or opt-out element” was one of two significant concerns that the Opposition has with the legislation in its current form, the other being that the legislation exempts the scheme from Freedom of Information laws.

Both issues were first raised by the Law Institute of Victoria last year, with the peak body last week saying it still has “significant concerns with the bill”, despite the obvious improvements to healthcare outcomes on offer.

“Patient autonomy must be front of mind in any health legislation being put forward by government to protect patients’ rights,” Law Institute of Victoria president Tania Wolf said, adding that opt-out would “place choice back in the patients’ hands”.

The Victoria government has said it does not intend to support any amendments that would introduce an opt-out, arguing that it would be a backwards step and that other states and territories also do not offer that option.

Premier Daniel Andrews reportedly said on Thursday that it was “highly unlikely” the changes would lead to the disclosure of private information due to the safeguards in the bill, noting that information is already held and shared in physical formats.

The Victorian Greens, which voted with the state government on Thursday, intend to work with the other parties in the Legislative Council on possible improvements and reassurances, according to MP Tim Read.

“That is why we will not support the reasoned amendment in the lower house, which is a rather blunt instrument, while we are willing to consider some aspects of it,” he told the Legislative Assembly.

“So let us pass the bill this week to help our stressed public health system and take the opportunity to improve the bill in the other place and strengthen health privacy while we are at it.”

Ahead of the next sitting week of Parliament in March, Digital Rights Watch chair Lizzie O’Shea has written to the Greens and the crossbench to urge them to propose “significant amendments” to the bill or to oppose it entirely.

“We do not accept the argument that an opt-out mechanism would undermine the effectiveness of the system. There’s no harm to allowing people to opt-out, and such as design is consistent with a human rights-based approach,” she said.

Ms O’Shea also raised cybersecurity concerns, arguing that the “proposed system appears to be worse than My Health Record, which had a similarly poor approach to cybersecurity but did at least permit patients to opt-out.”

“Victoria has historically been a leader federally in respect of human rights, including privacy. To allow the proposed system to be implemented would represent a grave departure from this tradition,” she added.

Do you know more? Contact James Riley via Email.

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