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University program shut down amid class action investigating veterans' medical data distributed with

2024.02.15

· In short: A program that involved the use of veteran's healthcare card billing data for medical research by an Adelaide university has been cancelled.

· The Department of Veterans' Affairs says billing data was automatically de-identified before being accessed by researchers.

· What's next? Law firm Gorden Legal is investigating a potential class action against the department on behalf of veterans affected.

A University of South Australia program has been shut down and a class action is being considered amid claims by advocates that sensitive information about veterans was disclosed without their consent.

The Medicines Advice and Therapeutics Education Services (MATES) program has been cancelled amid revelations that the program was using identifiable data.

The program, led by the Department of Veterans' Affairs (DVA) and has been running since 2005, involved the use of veteran's healthcare card billing data provided by the department to conduct medical research.

Last week, the department's ethics committee revoked its approval of the program.

Returned and Services League (RSL) South Australia president Dave Petersen said the impact on veterans has been profound.

"I know of veterans today who will not go to the doctor, because they do not want their medical information to be sent to the University of South Australia," Mr Petersen said.

"I have veterans who are reporting to me great distress that their privacy has been breached."

Advocates have welcomed the closure of the program.

Former state Veteran Affairs minister Martin Hamilton-Smith said while the program had saved lives, permission should have been sought from those affected.

"There's always good outcomes, but there's always unintended consequences," Mr Hamilton-Smith said.

"And apart from privacy aspects to this, now this data's been collected … is it going to be retained? Is it going to be destroyed? We just don't know."

In a statement, a UniSA spokesperson said the university was working to return the data to the department.

"UniSA is committed to advancing the recognition of veterans' health and wellbeing needs," the spokesperson said.

"When UniSA became aware of questions raised with DVA about consent for the data it provides to the university, the university requested the suspension of the transmission of that data.

"UniSA is in the process of returning that data securely to DVA, as requested by the DVA Human Ethics Committee prior to the minister's announcement of the program's closure."

Potential class action

A legal firm that specialises in compensation, Gordon Legal, said in a statement that the program "involved the mass disclosure of over two decades of identifiable data".

"Gordon Legal... will investigate a potential class action against the Department of Veterans' Affairs for breach of confidence arising from the unauthorised disclosure of the medical information, personal information and contact details of up to 300,000 service men, women and their families," the statement said.

The law firm said it had filed a representative complaint with the Information Commissioner "on behalf of all those affected by the disclosures".

A law firm is investigating compensation for veterans whose personal information was given to UniSA without their consent.(Getty: Philippe Hugeuen/AFP Photo)

"Recently, the DVA conceded that it misled the Information Commissioner about the extent of the disclosed information in an earlier investigation of the MATES Program," the statement said.

Lawyer Seb O'Meara, who is leading the law firm's investigation into the issue, said the firm would consider  "avenues for compensation".

"This matter highlights the crucial need for government bodies to be held accountable for protecting Australians' sensitive information," the lawyer said.

"Our investigation will look at legal options to protect the privacy of veterans and their families and attempt to rectify these injustices."

Data transfer stopped six months ago: department

In a statement, the department said it stopped transferring data to UniSA last August to enable a "thorough examination of the existing arrangements".

"DVA takes its obligations under the Privacy Act extremely seriously," the statement said.

The department said it was important to note that "there has not been any unauthorised access of veteran data".

"The data has not been made available publicly or for nefarious purposes," the department said.

"DVA only ever provided client data for the purposes of MATES to a trusted organisation, the University of South Australia under strict data security and access policies."

The department said it provided the data to UniSA "in accordance with the ethics approvals in place at the time".

"This was done via a secure and carefully controlled channel. UniSA stored the data in a secure facility. Billing data was automatically de-identified before being accessed by researchers for the thematic review under the MATES program."

The department said the data did not include doctor's notes.

"Identifying data was only used to communicate with the veteran themselves, as well as their doctor, in the event that the analysis of the de-identified data revealed risks to the veteran's health," the department said.

"The letters that went to veterans and their doctors provided invaluable insights that supported those veterans receiving the most appropriate treatment possible."

The department said an external review was conducted last year into the administration of the opt-out procedures.

"The review concluded all other such requests received by DVA to opt out of MATES had been properly implemented," the department said.

It said any future program would be subject to new approval by its ethics committee.