A plan for a centralised health database in Victoria that denies patients the right to opt-out has been revived by the state government, reigniting privacy and data security fears among digital rights advocates.
The Health Legislation Amendment (Information Sharing) Bill 2023 was introduced to state Parliament last week after the 2021 version of the bill lapsed when Parliament was prorogued ahead of the election in November.
The bill aims to improve health outcomes by centralising medical records across the state with a centralised system that health services can use to share information, bringing Victoria into line with other states like New South Wales and Queensland.
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.
It was recommended in an independent report on the elimination of avoidable harm and deaths in 2015, with work to create the database – then known as the clinical information sharing platform – commencing in 2020.
The system bears a resemblance to the My Heath Record system at the Commonwealth level, which became opt-out in 2018. More than 2.5 million people chose to opt out from the system, equating to nearly 10 per cent of all Australians eligible for it.
But unlike the 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, a design feature that has been criticised by legal, civil and digital rights organisations.
The Opposition intended to move amendments for an opt-out function last year, however records show that the bill did not progress to the Legal and Social Issues Committee for review before lapsing.
The government’s decision to reintroduce the bill unchanged has angered privacy groups, who called on the government to introduce changes that would allow Victorians to opt-in or, at the very least, opt-out.
Digital Rights Watch program lead Samantha Floreani told InnovationAus.com the decision “shows that the Victoria government is not taking community concerns regarding privacy and digital security seriously”.
“Medical data is extremely sensitive and should be handled with the utmost care and respect for the people who it is about. The number of people who opted out of My Health Record has already shown that a lot of Australians are uncomfortable with centralised health data systems,” she said.
“While there are of course potential benefits of a more efficient health system, re-introducing this bill without adequate public consultation is not how you build trust with the public for digital initiatives at a time when…people are more aware than ever of the risks that come with the collection and storage of their information.”
Australian Privacy Foundation president David Vaile said the decision to limit choice by not offering opt-out is “as aggressive and as hostile as the big bullying global giants like Facebook and Google, who use that same sort of approach”, describing it as an attempt by the government to “bulldoze people into [the scheme]”.
He said that unlike many other services, medical care is “not optional”, meaning there is a greater need to ensure people are fully informed about where their data will be used and for how long, as well as given the option to opt-out.
“The shocking thing about this is they’re explicitly saying consent has no role in this,” he told InnovationAus.com, adding that the kind of data to be contained in the database will be “unprecedently broad”.
Introducing the bill last week, Health minister Mary-Anne Thomas said the government “recognises both the sensitive nature of health information and the importance of having critical strict safety, security and privacy measures… in place to ensure it is protected”.
She said the bill will require that only “authorised health staff will be able to view this information for the purposes of treating a patient”, while new criminal offences will be introduced to deal with any unauthorised access to the platform.
“The new platform will improve the way data is stored, making it a safer and more secure system than faces and phone calls,” Ms Thomas said, adding that there will be “audit checks” and “next-generation antivirus tools” to prevent unauthorised access.
A Victorian government spokesperson would not say whether any further consultation on the bill had occurred since last year, or why the new bill dismissed the privacy concerns of legal, civil and digital rights organisations.
The government has also included “strict rules around who can access patient information” in the legislation, so that “Victorians can rest easy knowing their health data is secure”, the spokesperson added.
Debate on the bill will resume next week.
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