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Health
Victorian state political reporters Richard Willingham and Bridget Rollason

Privacy concerns as Victorian government looks to pass medical information-sharing bill

One in 10 Victorians opted out of the federal My Health Record program. (ABC News: Robert Koenig-Luck)

Rebecca* has done everything she can to remain secret from her abusive ex-partner.

He's currently in prison – serving a third sentence for violently assaulting her – but she's worried about what will happen when he gets out, including to their daughter.

"So much has gone into keeping us safe and all of that could change if my personal details are shared," she said.

Rebecca is concerned about new laws before the Victorian parliament that will allow hospitals to share her personal information.

She fears her ex-partner, whose mother is a nurse in a public hospital, would be able to track her down.

"I am so fearful that he will be able to obtain information about our new lives and find us again like he has in the past," she said.

The Andrews government says the legislation will allow Victorian hospitals to easily share patient information through a new, centralised electronic system, to help patients get the best possible care.

But there is no opt-out provision in the bill — everyone is included automatically.

Health minister rules out changing bill

More than 10,000 people have already signed a petition to the parliament calling for a rethink and the government will face a challenge to pass the laws, with the opposition and some upper house crossbenchers seeking amendments to the bill.

The system has been compared to the federal My Health Record program – which 10 per cent of Victorians have chosen to opt out of.

"I opted out of My Health for myself and my daughter, but I kept my grandfather in because he has a lot of medical problems and having his information easily accessed by different doctors is very useful," said Rebecca, who is also a carer for her grandfather.

"But for many people in situations such as myself, there needs to be a choice about whether our personal details are shared."

Mary-Anne Thomas said adding in an opt-out provision would be "a backwards step". (AAP: Joel Carrett/File)

Health Minister Mary-Anne Thomas said the government would not change the bill, which was expected to pass the lower house this week, and said there was already information sharing going on between health services via telephone, fax and notes.

"That would be a backward step,'' Ms Thomas said.

"It would put us out of sync with other states, it would lead to unnecessary delays in our health system."

The government has begun talks with upper house MPs about securing passage of the bill — Labor only commands 15 of 40 votes in that house.

The Coalition, the Greens and the Liberal Democrats have all expressed concerns about privacy safeguards — an issue that has become more prominent in the wake of major data hacks at Medibank and Optus.

The Victorian parliament will also be forced to hold a special debate over the bill for the first time under new rules, after the petition garnered more than 10,000 signatures.

The opposition will move amendments to the bill for an opt-out provision and for the ability for Victorians to request information from the health department about who has accessed their personal data under freedom of information laws.

Shadow Health Minister Georgie Crozier says Victorians want control over their patient information. (ABC News)

"I understand the intent of what the government is trying to do here, but it is very important that patients have a say about how their medical information is shared," Shadow Health Minister Georgie Crozier said.

"We know there have been serious cyber attacks and patient information has gotten into the wrong hands, so it is understandable that Victorians want to be able to have some control over where their patient information is going."

Liberal Democrats MP David Limbrick said the system should be opt-in but in the absence of that, he would support changes to make the system opt-out.

"The government should educate people about why it's a good idea and encourage them to opt in, there are various ways they could do this, including at the doctor's office," he said.

Former GP and Greens spokesperson for health Tim Read said the party was open to supporting the opposition's amendments because the government had not done enough to address people's privacy concerns.

"Staff in our public hospitals are often working with one hand tied behind their backs because they don't have access to past medical history, so we need something like to reduce diagnosis delays and doctors wasting time getting records faxed," he said.

"But we need to be guaranteed that this system is as safe as possible in terms of who can access the data and patients also need to be able to find out who has looked at their information."

The government says the changes will allow Victorian hospitals to easily share patient information to improve care. (ABC News)

Other states have similar schemes lacking opt-out provisions

There is support from the medical community for the scheme. Western Health CEO Russell Harrison said the new system would be a game-changer for clinicians to be able to treat patients in a timely way.

"We share information between health services all the time, generally it's on the phone or by fax, so this would make it much more efficient, much more secure and much safer," he said.

"At the moment we have access to the My Health Record and we try and use that, but a lot of specialists aren't allowed into it — it's optional and there's not a great amount of information in there, so sadly what was planned to try and do this job isn't doing it."

The Law Institute of Victoria (LIV) has also voiced concerns about the bill not including an option for Victorians concerned about privacy to opt out of having their personal information shared.

Tania Wolff says it is not safe for some patients to be part of such a system. (Supplied: Law Institute of Victoria)

"Although the patient safety and health efficiency argument is used in favour of these new laws, it is not safe for every patient to have their healthcare information accessed by others," LIV president Tania Wolff said.

"There is a lot of information in discharge summaries and there might be family violence concerns."

Ms Wolff said the bill also lacked safeguards for people to know who had accessed their files.

"You cannot then write to the department and ask who has accessed your data and why they have."

The laws aim to follow Queensland, New South Wales, South Australia and the ACT, which have health information-sharing arrangements that also do not have the provision to opt out.

Only treating clinicians directly involved in the care of patients can access medical information and heavy fines will apply for data breaches.

*Rebecca's name has been changed for privacy reasons.

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