The Victorian government’s plan for a centralised health database for all people with no consent has been labelled “bureaucratic imperialism” and “inherently dangerous”, with a last minute push to allow people to opt-out from it.
The state government is attempting to pass legislation facilitating the establishment of a centralised electronic patient health information sharing system for health services to share health information to provide medical care.
The bill was debated in the Victorian upper house last week but did not come to a vote. It will likely be voted on when Parliament sits again next week.
The health record will be used by state hospitals, ambulance services, certain residential care services and public health services, with information stored in it to include prescribed medicines, allergies, discharge summaries and lab results.
The database has been in the works since 2020, and was a recommendation from a 2015 independent report on the elimination of avoidable harm and deaths.
In contrast to the similar national My Health Record, Victorians will not be given any option to opt-out of the health database and consent will not be required, under the state government’s plan.
The new database and information sharing framework will help to provide the best care possible for patients, Government Services Minister Danny Pearson said.
“The application of the bill recognises the challenges of siloed information across the Victorian public healthcare system, and the importance of strengthening the system for the health and wellbeing of all Victorians,” Mr Pearson said in Parliament.
“In Victoria, critical health information is currently spread across different health services, in separate systems and in paper records. This fragmentation of patient health information often means that clinicians manually gather patient health information, through fax or phone calls.
“Enabling information sharing through state of the art technology operated by the department is critical to supporting the reforms underway to modernise and future-proof our health systems for the health and wellbeing of all Victorians.”
The legislation introduces two new criminal offences for the unauthorised access of information on the health database, with a maximum penalty of two years imprisonment.
The scheme is similar to the Commonwealth’s My Health Record, which became an opt-out system 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 the model put forward by the Victorian government does not include the ability for individuals to opt out of the system.
The plan has been criticised by legal, civil and digital rights organisations, with concerns centred on a lack of ability to opt-out, that the database could be a “honeypot” for hackers, and that the proposal has been rushed through Parliament without adequate consultation.
The Opposition and crossbenchers have flagged that they will move amendments to make the health database have an opt-out function in Parliament next week.
This would be a crucial step in ensuring the system is trusted by the public, Digital Rights Watch program lead Samantha Floreani said.
“A person’s health information is incredibly sensitive, and if it is not properly protected from misuse or unauthorised access it can lead to harmful outcomes including stigma and discrimination,” Ms Floreani told InnovationAus.com.
“At the same time, it would be remiss to ignore the possible benefits of having access to vital health information, especially in times of emergency or for those with complex medical histories. But people should not have to trade safety online for safety offline. That is why building in strong privacy protections and robust digital security measures is essential, without it, the database stands to harm those it seeks to help.
“The proposed amendments to allow people to opt-out, or to change to an opt-in system only go part way toward managing the risks associated with this kind of database. People should have the right to not participate, but built-in security and privacy measures to the highest standard should be there for those that do.”
Electronic Frontiers Australia chair Justin Warren said the system needs to be opt-in and is a form of “bureaucratic imperialism”.
“After the widespread public outcry over My Health Record, it is outstanding that the Victorian government wants to ignore the public’s clear desire to have control over their own medical information,” Mr Warren told InnovationAus.com.
“Australian governments need to earn our trust, not impose these systems by force. Our governments seem remarkably impervious to learning how to build trust, despite ample opportunities to do so.”
Mr Warren said the Victorian plan “fails the tyrant test” and “abuse is inevitable”.
“Data about our health is some of the most personal, sensitive and private data there is. Forcing us to submit it into a centralised government database is inherently dangerous. Making it opt-in would at least guard against some of the risks, so perhaps the Victorian government has developed an appetite for danger?” he said.
“We need fundamental and robust privacy protections to guard against this kind of power grab. When the inevitable data breach happens, what do we win?”
The Law Institute of Victoria has also called on the state government to withdraw the bill and consult more widely on it.
Shadow Health Minister Georgie Crozier said the bill had been brought to Parliament “very quickly” and that an opt-out mechanism should be included.
“I just think that it is a fair and reasonable proposition for people to want to have an ability to say, ‘look, I don’t want my information shared’, especially if you have come out of a situation where there is domestic violence and there is somebody working on a ward or in a hospital that knows the perpetrator,” Ms Crozier said in Parliament.
“I do have really huge concerns around the government’s inability or not wanting to allow people to have that opt-out. It is happening far too quickly without proper analysis and depth of looking at all the scenarios and without having really critical feedback from stakeholders.”
The Victorian Opposition will also push for the legislation to be referred to the Legal and Social Issues Committee for inquiry, with a reporting deadline of 15 September.
If passed, the health database will be up and running by 17 February next year.
