Some Victorians could avoid seeing the doctor or abandon the health system altogether if they can’t opt-out of the state’s proposed health database, according to a leading digital rights campaigner.
“If people are concerned that information will not remain between just them and their doctor, then they’re less likely to seek medical care,” says Justin Warren, chairman of digital rights campaign group Electronic Frontiers Australia.
He is one of many across the digital, legal and health sectors who have criticised the absence of an opt-out clause in the Health Legislation Amendment Bill reintroduced to the Victorian Parliament last week. The original bill lapsed when parliament was prorogued before November’s State Election.
Warren says people suffering from sensitive conditions have good reason to keep their medical records private and away from a centralised database.
“There’s a well-acknowledged issue around people’s willingness to access health care, particularly for illnesses or diseases that are socially frowned upon, where there is stigma attached. We’ve seen this in particular with HIV.”
“Your HIV status, if people find out about that, can negatively impact you in a bunch of ways, not in good ways, either. For example, employers or insurance companies or others can discriminate against you. Now, it’s illegal for them to do that, but it still happens. Sexually transmitted infections is another one.”
A centralised health database for Victoria was a recommendation of a 2015 independent report into the elimination of avoidable harm and deaths. Work began in 2020, but unlike the Federal Government’s My Health Record database, in which 2.5 million people chose not to participate in, the Victorian proposal did not allow an opt-out clause.
Despite widespread criticism when the bill was first introduced and the Opposition proposing amendments to include an opt-out clause, the re-introduced bill has followed the same approach as the first.
Warren says that by ignoring these concerns, especially after its controversial approach to managing Covid19, the Andrews Government is playing a dangerous game.
“I think it does somewhat steamroller over the public concerns about this sort of surveillance of private health information. People are, rightly or wrongly, concerned about mandates for vaccination. Now, I’m pro-vaccination, it’s clearly a very, very good thing.”
“But there are those who are not and this just further fuels some of the conspiracy theory side of things, and that undermines the public health efforts. So the desire to have access to this information and use it to benefit the public, like that’s a good desire, but the imperialist view that the state has the right to access this regardless of what individuals believe is a bit heavy-handed and shouldn’t be necessary in a modern liberal democracy.”
The Law Institute of Victoria also has concerns about the bill, not just about the database being compulsory, but the lack of transparency about who will be able to access it.
‘The opt-out is the principle one we’d like to change, the other one is the ability to be able to audit access to your information which is an FOI request or any other audit that can be done,” says LIV President Tania Wolff.
The bill makes the health database exempt from Freedom of Information Laws, meaning people will not be able to find out who has accessed their medical records or when.
Wolff says this is concerning given the scale of sensitive information involved and that breaches are already common.
“We have members who are involved in various public hospitals, and they tell us that a very large amount of work is generated around inadvertent disclosures of confidential patient information within the hospital itself,” she says.
“Here you’re looking at inadvertent disclosures or inappropriate access to information across all public health systems in Victoria and community health organisations and other organisations, and there is no ability for you to audit who has access to your information and that’s why we’re concerned about that because this is a system that hasn’t been developed yet, with protections that are not in place yet and it is specifically excluding your ability to audit.”
In an interview on Monday, Health Minister Mary-Ann Thomas told ABC Radio Melbourne that allowing FOI requests would involve the department of health rather than just the health services themselves and that the government was keen to keep the two apart.
She said only clinicians would have access to the data and that strict auditing measures would apply.
“A clinician that accesses your record their name will be digitally recorded. We have an auditing system that will be in place to ensure that only those that need to access your record, that is your treating clinicians, can access it, and that there are significant penalties in place for inappropriately accessing the data.”
Thomas argued that the FOI or opt-out clauses were necessary for improving efficiency and providing doctors with the best possible data.
“Time is of the essence when we are treating people in our public health system and last quarter, I have seen half a million presentations to our emergency department. Clinicians need to make decisions quickly and on the run. We know that this bill will save lives, it will deliver better outcomes for patients. We don’t want to see I have an admin in the way of them delivering urgent health care.”
For Warren, such a stance is revealing.
“What the government is saying is we have so little confidence in the value of this system that we can only get people to use it if we force them to because they’re not going to see any value in it without us making it compulsory. That really, to me, suggests that the government is well aware of how poorly it does with technological systems and how little confidence people have in them.”
Confidence in large technological systems and databases has been eroded further in recent times by data breaches at Optus and Medibank Private, which revealed the sensitive information of millions of Australians.
Warren says the proposed health database is at risk of similar breaches but that the government hasn’t addressed them, only touting the benefits instead.
“What I haven’t seen here is an acknowledgement that something could go wrong. And what will be done if it does instead what we get is ‘don’t you worry your pretty little head about it’ in very Joh Bejelke-Peterson areas, ‘everything will be fine, trust us’. If governments want to be trusted, they have to demonstrate they are trustworthy. And this government so far isn’t doing a great job on the consent front.”
Neither the Opposition nor the Greens and Legalised Cannabis Party has announced their position on the bill, with support from either required for it to pass.
Debate resumes this week.