You would be hard pressed to find an article positively recommending having a My Health Record.
That’s because the government has set it up so that we all automatically get one unless we opt out. So they largely dispensed with the bother of promoting it. Do nothing, and you’re in. Even if you later change your mind, once a My Health Record exists, whatever is in it will not be deleted until 30 years after your death. There are already 6 million people for whom, often without them realising, a My Health Record has already been created following the Labor government’s introduction of the My Health Record Act in 2012.
There are in theory very good reasons for everyone to have an accurate, complete, up-to-date, electronically available medical record. The promise of better connected care, in which your health information is all in one place providing a convenient snapshot of your medical history, has myriad potential advantages.
But like so much under capitalism, what could be an excellent, rational innovation is likely in practice to be more curse than blessing. Think only of how labour-saving technology, which could create shorter and more pleasant working hours for all, is used instead to de-skill jobs, sack people and create new kinds of drudgery. Hence the justified suspicion with which the scheme has been received.
On the simple criterion of accuracy, the My Health Record has little to recommend it. Take the case of Louise Beaumont, one of those who had already chosen to have a My Health Record. When she logged on and saw a prescription for valium, a drug that she had never taken, she tried to have it removed. After three hours of getting nowhere, she was told to ring back in two weeks. Frustrated, she asked could she just opt out, at which point the answer was, “Don’t do that, because then we can never correct your record”.
One reason that inaccuracy will continue to bedevil the system is the ongoing cuts to staffing (and low wage outsourcing) in the public service. The few who are employed are increasingly required to reach daily or hourly targets of “customer interfacing”, frequently at the expense of accuracy.
But the standout reason for widespread distrust of the system is privacy. In an era when government surveillance and information collecting have been normalised in the name of national security, this is well founded.
Many of us have now become aware of Section 70 of the Act. It’s the part that empowers the Australian Digital Health Agency to give out your data to other agencies. In an article that subsequently disappeared from its website after pressure from the government, the Parliamentary Library contradicted health minister Greg Hunt’s assertion that law enforcement agencies will not have access to the data without a warrant. They will – no warrant, subpoena or court order necessary. Even the police – both the peak body of federal police and the Queensland police union – have expressed surprise and concern at the ease with which their members will be able to access the records (if only because it may advantage police misconduct investigators).
A list of who can get access (in addition to the inevitable hackers) includes police, courts, the Australian Tax Office, the Department of Home Affairs, Centrelink and other government agencies. The possibilities of punitive use of the data are obvious.
We don’t have to speculate on this possibility. In 2017 the government made public the supposedly private details of Andie Fox’s interactions with Centrelink in order to paint her as a liar and bludger. The reason? She wrote an article criticising the government’s discredited automated debt recovery system.
There is also a marked tendency for state and federal governments to remove barriers to information sharing between agencies, departments and the private sector, meaning that information that may have been collected for one purpose can increasingly be shared and used for others.
Nor does the experience of similar schemes elsewhere do anything to allay these concerns. The person appointed to oversee My Health Record is Tim Kelsey, who also oversaw the British version of the same scheme, Care.data. Care.data was scrapped in 2016 after numerous scandals, including one in which patients’ information was sold to drug and insurance companies.
When there is money to be made, privacy isn’t in the race. Companies here are already attempting to profit from this rich harvest. On 24 June the ABC reported that one of the My Health Record partner apps, HealthEngine, was boasting to advertisers that it could tailor ads to patients’ illnesses. As people who used the app discovered, their information had been passed on to personal injury lawyers.
Other vultures are already circling. Mark Fitzgibbons, head of private health insurer NIB, claims that NIB “desperately need this data to make the world a better place”. He means, “If you’re likely to make a claim, we’d like to exclude you”.
In a world where profit and prying matter more than health, the hostility to My Health Record is well founded.