The premise seems simple and hard to argue with: establish an online database for medical records, controlled by the patients themselves, to improve access to crucial information for healthcare providers.
It says a lot about the federal government (and the Labor Opposition that signed off on the current process), that the My Health Record (MHR) scheme has so many issues that large numbers of people, a wide array of advocacy groups and many doctors are urging the public to “opt out”.
The former president of the Australian Medical Association Kerryn Phillips even suggested that such was opposition to the flawed scheme from doctors, that they may boycott it.
Meanwhile, a statement by three mental health peak bodies, reflecting the views of many groups representing marginalised or stigmatised sectors, concluded: “We can’t ethically encourage people to stay in this system.”
The scheme was first established in 2012 by the then-Labor government as an “opt-in” process. In other words, a patient had to decide they wanted a record created.
But due to low take up, this year the Coalition government — with Labor support — decided to make it “opt out”. This means that unless someone consciously asks for a record not to be created over a three-month period that expires on October 15, one will be created automatically.
Once created, you will not be able to delete your record, rather only “deactivate” it. The data will still exist — until 30 years after your death — and be able to be accessed by law enforcement agencies, among others. By contrast, if you opt out by October 15, you can choose to opt in whenever you wish.
This dramatic change to seeking to force MHR on people is because the government has spent hundreds of millions of dollars already on this program without comparable results.
The reasons for criticism of the scheme are many, and keep growing. They include serious concerns over the security of the data and threat to patients’ privacy, risks the data will be exploited by insurance or drug companies, and, especially controversially, the threat to civil liberties by the ability of law enforcement agencies to access the data without a court order.
There are clearly real concerns, but are they outweighed by possible benefits to health care provision?
A piece from The Conversation titled “Why You Should Opt Out” answers this directly: “Contrary to what many Australians may believe, MHR is <I>not</I> a clinically-reliable medical record, and was not designed to be. It is not up-to-date and comprehensive …
“If, for example, a doctor were treating a child in an emergency, the doctor could <I>not</I> rely on an MHR to know what medications the child has been prescribed up to that date.
“In an emergency, an unreliable record is a distraction, not a help.”
For these reasons, the piece notes: “A recent poll on the AMA’s doctors portal suggests 76% of respondents think the MHR will not improve patient outcomes while 12% think it will.
“Notwithstanding this fundamental deficiency, the government is pushing ahead with an inherently risky scheme.”
One of the most controversial aspects of the scheme is the capacity for law enforcement agencies to access patient records without a court order.
The Australian Digital Health Agency (ADHA), which oversees the scheme, and health minister Greg Hunt both deny police will be allowed to do this. They say ADHA policy prevents this occurring.
However, whatever the ADHA’s stated policy is, the legal regulations allow this to occur. The law clearly states that law enforcement agencies can access the information without a court order if they “reasonably” believe it will help prosecute or stop a crime.
Humiliatingly for Hunt, this point was made by none other than Queensland Police Union. It released a statement clarifying that police would not need warrants to access MHR data.
The QPU’s reasoning was revealing. It warned police that their MHR data could be used against them if they were ever investigated for wrongdoing, while acknowledging that this same provision could assist police in their work.
The logic of the QPU message to its members is simple: As citizens this threatens our rights, as police officers it gives us greater powers.
It is easy to see the problem. Women who have abortions in states where it is still on the criminal code could conceivably be prosecuted if this information is on their record. So could those who use illicit drugs or engage in activity that is relevant to their health care treatment, but which involves illegal activities.
Of further concern is that the agencies with powers to access records without a court order include immigration and the Australian Tax Office.
As it stands, MHR represents a dramatic increase in the state’s power to access private, and potentially damaging, information.
Concerns about the security of the data are also very real. This government has little credibility on online security matters after multiple scandals, such as the 2016 census debacle. The fact that the MHR website crashed on the first day people could opt out only proved the point.
A July 22 Guardian piece reported the somewhat startling news: “Australia’s impending My Health Record system has a privacy framework that is identical to a failed system in England that was cancelled after it was found to be selling patient data to drug and insurance companies, a British privacy expert has said.”
The article noted: “The man in charge of implementing My Health Record in Australia, Tim Kelsey, was also in charge of setting up care.data.”
Phil Booth, the coordinator of British privacy group Medconfidential, said: “The parallels are incredible. It looks like it is repeating itself … what is plainly obvious to us from the other side of the planet, is that this system seems to be the 2018 replica of the 2014 care.data.”
Many people have very good reasons to worry about the privacy of their health data. In particular, those who already suffer stigma and discrimination in their daily lives, such as the LGBTI community, illicit drug users, sex workers and those who suffer from stigmatised illnesses such HIV or mental health problems.
The mental health peak body statement said: “My Health Record increases the risk of discrimination and health inequalities for people with mental illness.” It pointed out that these factors were potentially deadly for such people.
Other sectors citing serious risk to health were women’s agencies, which a Brisbane Times article said “raised very serious safety questions with the federal government’s new online health service, My Health Record, saying domestic violence perpetrators can potentially access victims' confidential health records”.
The wave of public criticism and opposition to the scheme is already having an impact. Despite initially supporting the current process, Labor now wants to extend the opt-out period — and has called for the MHR roll out to be suspended until concerns are dealt with.
Using modern technology to improve and streamline health care provision is a worthy goal. But governments that combine incompetence with a commitment to cost-cutting, surrounded by profiteering companies, cannot deliver this safely or reliably.
The sheer level of concern from such a wide array of sectors says very strongly that we have very good reasons to opt out of a system that does not guarantee improvements in medical outcomes, but threatens the privacy and security of our data — with potentially dire consequences.
[If you wish to opt, out, you can do so here.]