Medical information sharing bill set to pass without opt-out option

A controversial plan to centralise the medical records of Victorian public health patients is likely to pass in state parliament on Thursday with strengthened oversight and privacy protections but without opt-in or opt-out provisions.

The health information sharing bill is aimed at improving health outcomes and making the health system more efficient by electronically sharing patient data across public health services through a central database.

Premier Daniel Andrews said the database would not work if it was optional.Credit:Jason South

But it has been criticised by law and privacy experts who have said the ability to opt out is needed to protect patient autonomy and limit risks to vulnerable people.

Labor, which does not have a majority in the upper house, argues the database would be secure, is similar to one already in place in NSW and is needed to improve patient outcomes and streamline the health system.

The Greens will support the legislation after weeks of negotiations to amend the bill.

Georgie Purcell from the Animal Justice Party said she planned to support the amended bill, while Legalise Cannabis was finalising its position late on Wednesday afternoon.

Legalise Cannabis MP David Ettershank said on Wednesday morning that the party was “still working through our issues” with the bill.

The government has agreed to mandate a privacy management framework to help protect the identity of people at risk of harm, such as domestic violence survivors. Such people may have the option of using an alias, for example.

The privacy framework would also add safeguard processes for sensitive information and guarantee patients could obtain the names of people who have accessed their medical information.

The model would also be reviewed after two years to ensure it was functioning appropriately.

Acting Greens health spokesman Dr Tim Read said the system would ensure health workers wasted less time on the phone or waiting for faxes and more time treating patients. He said there were benefits of the database that could be lifesaving in emergencies.

“But trust is also important and patients need to have confidence their information will be protected,” Read said.

Opposition health spokeswoman Georgie Crozier, the leader of the opposition in the upper house, said she had concerns about the database design but that she understood the intention of the bill.

An independent report commissioned by the government recommended establishing a centralised database following a series of infant deaths at Bacchus Marsh Hospital.

The upper house debated a petition signed by 10,000 people and tabled by the Liberal Democrats’ David Limbrick on Wednesday afternoon. Limbrick has sought amendments to make the database optional and said patient consent should be a non-negotiable priority.

The federal model, My Health Record, includes the ability to opt out.

Stalking victim Di McDonald, speaking outside the Victorian parliament last month, said she was horrified when she learned that patients would not be able to opt out of the database.

McDonald said she understood there would be protections in place and a breach might be rare, but if her details were accessed, “the horse has bolted”.

Anyone caught abusing the data or accessing it without authorisation could be imprisoned. Insurance companies would not have access to the database.

A government spokesman said the amendments reinforced protections that were already in place in the proposed legislation.

“They formalise existing plans to consult with patients, carers and healthcare workers to develop a privacy management framework that further protects health records, restricts who can access them and allows patients to know who has accessed their information,” the spokesman said.

The Law Institute of Victoria, Liberty Victoria and Digital Rights Watch have repeatedly called on the upper house to legislate an opt-out provision, warning people could avoid seeking medical care if they were concerned about their privacy.

The Victorian Alcohol and Drug Association said people dependent on drugs were stigmatised and might be discouraged from seeking help.

Premier Daniel Andrews said the system would not work if it was optional.

“This is nothing more than sharing information that’s already there to make sure that you get the best care possible.”

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