The Victorian government has rejected calls to allow individuals to opt out of its new electronic health database, despite a push from the Opposition and a number of civil and digital rights groups.
The Labor government is in a Parliamentary fight over the Health Legislation Amendment (Information Sharing) Bill 2023, which sets up a new electronic system for sharing patient health data across a range of public health services.
In contrast to the federal My Health Record scheme, the government plans to not give Victorians the opportunity to opt out of having their private health information shared on it.
This sparked the Law Institute of Victoria, Liberty Victoria and Digital Rights Watch to write to the state government urging it to introduce an opt out function.
The state Opposition also introduced an amendment in the upper house requiring that individuals be allowed to not be included in the new information-sharing scheme.
But the government has knocked back these proposals, and has reportedly secured the support of the necessary crossbenchers with a range of privacy-focused amendments.
Under the changes, there will now be a privacy management framework and an independent expert review of the scheme in two years.
With support from the Greens and other crossbenchers, the legislation will likely pass Parliament today, with no opt-out provision.
The Victorian government’s plan involves the creation of a secure electronic system to enable public hospitals and other health services in the state to share patient health information to assist with providing medical treatment.
It says this will improve the efficiency of medical care and address the current “fragmentation” of patient data in the state but has been widely criticised for being a breach of privacy with no way to opt out of it.
“The patient’s care journey can take them to many different public health services over the course of their illness or condition,” Health Minister Marry-Anne Thomas said.
“There are risks to the quality and safety of patient care when information is fragmented or missing across that journey.”
The current plan doesn’t strike the balance between privacy and medical care, Law Institute of Victoria president Tania Wolff said.
“All Victorians should be concerned about the failure to include an opt-out provision in this bill,” Wolff said.
“This signals a departure from a human rights and patient-orientated framework which is well established in other Victorian legislation.
“In its current form, the bill fails to strike an appropriate balance between clinical efficiency and safeguarding patient rights.
“That leaves the risk that individuals will disengage from health services or not seek medical treatment because they are afraid that their information will be shared, their safety will be potentially compromised, or an unlimited number of unknown people will have access to their personal medical information.”
Digital Rights Watch chair Lizzie O’Shea called for the bill to be rejected unless an opt-out function is introduced.
“Victoria has historically been a leader federally in respect of human rights, including privacy,” O’Shea said.
“To allow the proposed system to be implemented would represent a grave departure from this tradition.
“We urge members of parliament to consider proposing significant amendments or opposing the bill entirely.”
Shadow Health Minister Georgie Crozier shared many of these concerns in parliament, and introduced an amendment to include an opt-out mechanism in the scheme.
“It is information like cancer diagnoses, history of STDs, terminations and mental health issues,” Crozier said.
“For this government to say point blank we are having this system come into play without taking into consideration some of the sensitive natures around why people would want to have an ability to opt out just defies all logic in my mind.”
The state government rejected these calls, with a number of MPs pointing out that public hospitals are already allowed to share this health information, and that an opt out function would “undermine” the objective of the scheme.
“The data breaches are serious, but the reality is that current systems do nothing to stop the data breaches,” Labor MP John Berger said.
“This will create a uniform system and beef up those protections and will make those data breaches less likely, because if we have a few ad hoc systems and random systems that local GPs operate and who knows what, how do we know that they are secure?”
The Australian Medical Association has backed the Victorian government's proposal, saying that the benefits outweigh the privacy risks 99 to 1 per cent.