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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Well, well well, what a fine mess this government has created. First, they take away our rights so that private personal health information is owned by cavernous medical bureaucracies and there is nothing we can do about it. And then this nanny government puts us at risk. Who do we sue when a doctor accidentally shares patient information with a partner who only knows half or less of the history? How are women protected in domestic violence situations? What company manages the data and how do we know that it’s safe So many risks and so little caring. I would rather not receive care then be monitored even if it does affect my social credits score
Further to my earlier comment as someone who has worked in the records and information management field aggregating information from people who have approached organisations I have worked for ( State and Local Govt ) and for internal management purposes to deliver projects for the community, ignoring peoples views are detrimental to open and accountable government. Finally there is still a significant disconnect between many pieces of legislation/regulation State and Federal that define our democracy, and its operational effects at the bureaucracy level that needs sorting out . Privacy and data protection is only one of them. Make know mistake the digital world has brought many possibilities and enhanced our world in not all, but many ways to our benefit, but it also has the power to undermine it if we the people start to lose our rights to say no or at least have a choice in the matter
In 2017 the Andrews government deceived health services and local government that they were legally allowed to take all disability, mental health, aged care and home help services files which were all handed over. They also convinced public schools to use private organisations for the storage of all private information whom the State Gov has contracts with for the sharing of information. All these practices continue to this day. Of course they will seek to add medical files to their cache.
If people don’t wake up to what technology is. ultimately used for we will be heading for time when we are completely controlled, tracked and monitored . We will become slaves held captive by electronic tagging and surveillance. Technology may have offered a great future but know it is in the hands of the corporations and they just want control and power. Technology has become tool to oppress, censor and control people for the benefit of a few. Smash it, I can live without technology as I grew up in a world without it. Life was so much better then.
Aron, any database that can be created will be misused. When the primary key is your Australian Barcode it will be linked to every other database containing that key. They can all be misused at the same time ;o) “Tell us once ” at work ….
I am left speechless in the manner that the Victorian Government is trying to implement its centralised database as described in the article Here they are on one hand through all its agencies, trying to protect the publics right to privacy through the Privacy and FOI Act and the Public Records Act and in another debasing the peoples right to privacy. One truly wonders what the main game here is.