University of South Australia program shuts down Medicines Advice and Therapeutics Education Services (MATES) program with claims that personal identifiable data was being used without consent

February 16, 2024 |

The road to hell is paved with good intentions. That is never so true when ABC with University program shut down amid class action investigating veterans’ medical data distributed without consent. A program, operating since 2005, that was designed to help veterans involved some quite cavalier practices in handling their personal information. The first problem was that the data was disclosed without the veteran’s consent. This story is not new. Senator Lambie raised specific concerns about no consent, no opt out ability and the Department of Veteran’s Affairs looseness with the truth regarding the concerning practices of MATES in an adjournment debate in the Australian Senate on 2 August 2023.

Why did it take 6 months for those who ran the program to respond.  Even today the University of South Australia is crowing about how good the program is with Keeping patients alive by monitoring their medication . That is quite foolish in the circumstances. 

The ABC article provides:

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”.

“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.

The transcript of Lambie’s speech provides:

I just want to make sure all the veterans out there are listening to me because they are going to want to know about this if they don’t already. Remember the Optus data breach? Remember the Medicare data breach? Both of those cases have resulted in class actions. I will say that word again—class actions—because it is going to get very important against the companies not properly protecting the data of their customers. What if I was to tell you that a government funded agency had shared the data of about 300,000 Australian veterans without their consent? Last weekend, I picked up the Saturday Paper, and the story of the MATES program made my hair stand on end. Every time I hear another horror story about the Department of Veterans’ Affairs and their treatment of veterans, I think, ‘It surely cannot get any worse.’ And then there’s another horror story, and it’s always worse.

I would like to acknowledge journalist Rick Morton for bringing this shocking story to light. Morton has found out that the medical records of 300,000 veterans have been handed over by the Department of Veterans’ Affairs to the University of South Australia without—guess what?—the knowledge or consent of those veterans. This data includes you, veterans—your name, your birthdate, your family status, your hospital records, your pharmacy records, any sexual health treatment you’ve had, any drug addiction you may have had, your mental health services and anything else that may have been in your documents.

How did this happen? In 2014 John Howard—God bless Prime Minister John Howard!—launched the Veterans’ MATES program. MATES stands for medicines advice and therapeutics education services. The idea was to share veterans’ data to:

… evaluate treatments and treatment approaches, identify problems with medications … and support evidence-based education for doctors and health practitioners.

A source who spoke to the Saturday Paper said:

For the puffery that the department put out about improving health outcomes, the objective overwhelmingly of the MATES program appears to be one of costs reduction and control.

This program has been running for 20 years. For 20 years this deeply personal information has been shared without the knowledge or consent of the veteran community.

I was medically discharged in 2000. Since then, my medical records have been routinely collected by the Department of Veterans’ Affairs. But I’ll tell you what: nobody ever asked me if they could share my medical records. And I bet, to the 300,000 other veterans out there, they didn’t ask you either. They didn’t ask you. According to the story in the Saturday Paper, my medical records were being routinely disclosed on a monthly basis to the University of South Australia.

The Human Rights Commission approval for the MATES program in 2004 was on the basis that veterans would be able to opt out—except that neither the DVA or the goddamn University of South Australia ever ran an opt-out process, let alone asking us to opt in. They didn’t even bother, over sensitive medical information. The DVA is a Commonwealth department, and it has an obligation under the Privacy Act 1988 to safeguard personal private information.

How do we know about this? Because a veteran six years ago got an alert from the MATES program saying they had disclosed his personal medical information to his pharmacist and his doctor. The veteran put in a complaint and an FOI request asking what had been disclosed. That was in 2017. In the six years since then, the DVA has refused to stop the data handover, asserting that it was within its rights to do what it wanted with the medical records and didn’t need the consent of its clients. The Office of the Australian Information Commissioner found in April that the department had ‘interfered with the complaint’s privacy’ and breached two key elements of the Australian Privacy Principles. According to the report in the Saturday Paper, it appears that the DVA was dishonest—what’s new!—with both the veteran and the Office of the Australian Information Commissioner.

DVA claimed:

… participants in the MATES program are aware that they can, at any time, revoke their consent to use and disclosure of their personal information.

How about you tell us you were doing it first? I’m fuming. I am fuming that you had my medical records and you passed them over to a bloody university. How dare you? How dare you! I’m telling you now, veterans, I’m getting lawyers’ advice. There will be more to come, but I’ve had a gutful. I’ve had a gutful of the DVA sharing some of the most sensitive information of mine and of 300,000 veterans out there. The gloves are off.

 

The University of South Australia article lauding the MATES program provides:

Every year, the inappropriate use of medicines triggers over 250,000 hospital admissions, with many Australians suffering adverse reactions. But it’s not just our health suffering: the attendant cost to taxpayers and insurance companies is around $1.4 billion.

To combat this, researchers at UniSA’s Quality Use of Medicines and Pharmacy Research Centre have developed unique algorithms that monitor healthcare systems. The algorithms scan the disease, medication and device registered for each patient to identify potential problems in health care.

UniSA research is promoting safe medicine use, improving patient wellbeing and reducing the number of Australians admitted to hospital due to medication-related problems.

One striking example of this work is the Veterans’ Medicines Advice & Therapeutics Education Services (Veterans’ MATES) program, a collaboration between UniSA and the Department of Veterans’ Affairs (DVA). Using specialist data analysis techniques, veterans at risk of medication-related problems can be identified, their prescribers notified, and educational material provided to both.

So far, Veterans’ MATES has helped over 295,000 veterans, 33,000 doctors, 8,500 pharmacies and 2,600 residential aged-care facilities with improved care and health outcomes for the patients, and significant improvements to our healthcare practices. As a result, a model of the program is being trailed in New Zealand.

Dr Graeme Killer AO, former Principal Medical Officer to the DVA is proud of the partnership with UniSA. “We created a truly exemplar program that resulted in profound improvements in veterans’ health outcomes, cost efficiencies and behavioural change in healthcare provision. The national public learning from this highly successful program for veterans has been far-reaching across the wider health system, as well as being acclaimed globally.”

This algorithms to identify potential signals of previously unrecognized adverse reactions is now being deployed in countries in Asia, North America and Europe, utilising the data from different public health systems and demonstrating the potential of global medicine surveillance.

Combining biostatistical and behavioural psychology approaches with clinical evidence, researchers at UniSA’s Quality Use of Medicines and Pharmacy Research Centre have developed a unique model to ensure medications and medical devices are used safely; and it’s saving public healthcare dollars, too.

 

 

 

https://www.unisa.edu.au/research/impact-stories/keeping-patients-alive-by-monitoring-medication/

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