Nearly a million Australians have now opted out of the My Health Record system, as privacy amendments are debated in Parliament
A Senate inquiry into the system was told by the Australian Digital Health Agency head Tim Kelsey on Monday night that at September 3, around 3% of eligible Australians had opted out: around 900,000 people.
Shadow Minister for Health and Medicare Catherine King has pointed out that this is the first update since 20,000 people opted out on the first day they were able to do so.
“With two months to go in the opt-out period, that number is likely to rise to well over one million people,” she said.
“It’s clear now just how badly the Government’s rollout has undermined public support for a system that could deliver enormous benefits.”
She called on the Morrison Government to suspend the opt-out period – which runs until November 15 – until remaining concerns around privacy and security are addressed.
She said that while the ADHA had also said public awareness of My Health Record was high, 41% of eligible Australians were still unaware that a record would be created for them at the end of the opt-out period.
A number of politicians, particularly those from the Labor Party, expressed concern about the MHR in the House of Representatives on Monday, during a second reading of the My Health Records Amendment (Strengthening Privacy) Bill 2018.
They cited concern for people fleeing domestic violence, teenagers who do not wish to have their health data viewed by parents, and access to MHR by parties such as insurers or potential employers.
“We should be very clear: the legislation before the House today is a clean-up exercise, and it is a job only partly done,” Ms King told the House.
“We continue to believe that the My Health Record could save money and lives if implemented by a competent government. But that is a very big ‘if’, because this is not a competent government when it comes to digital service delivery.”
Changes to the MHR, such as setting out conditions under which courts could access a person’s My Health Record, and allowing the permanent deletion of health information for those who opt out, do not go far enough, she said.
Under the amendment being discussed, MHR could still be used as a tool in family violence, she said.
“The default settings give access to a child’s My Health Record to both parents and, in fact, they may even allow a non-custodial parent to create a record for a child that is no longer in their care.
“So, if a woman and her children are fleeing an abusive ex-partner, that partner could track their location by viewing the doctors and pharmacies that they visit.”
She said it was “ridiculous” to expect women fleeing violence to have to terminate the other parent’s access to their child’s MHR.
As teenagers who want to gain control of their MHR will need to create a myGov account and undergo a verification procedure, many will not have the access to necessary documents to gain this control, she said.
“That will mean that parents, even non-custodial parents, can view health information such as pathology reports, medicines information and other summary documents.”
She also expressed union concerns that employers, via employer doctors, could gain access to employees’ MHRs and potentially discriminate on the basis of pre-existing medical conditions.
A number of other Labor politicians weighed in, along with the Liberals’ Tim Wilson (member for Goldstein) who criticised Labor for the original implementation and said that he did not like the idea of a centralised system of storing health records, “least of all when the law doesn’t even put limitations or protections in the legislation around who can access it, so busybody bureaucrats, tax officials and people merely seeking information can access it”.
Matt Keogh, Labor member for Burt, took the privacy concerns a step further and outlined a dystopian future.
“Imagine a world where the government knew your entire medical history and your future job prospects were determined by this, a world where employers and government agencies could go over your head and review your confidential health records without permission,” he said.
“Imagine a world where you could be tracked by an abusive ex-partner through a publicly accessible database of all your medical information ever, a database containing all your medical information which has been put there without your express permission.
“It’s reminiscent of the dystopian world described in the movie Gattaca, not real life in Australia in 2018—yet this is the world we find ourselves in.”
However Labor’s Mike Freelander, member for Macarthur, said that MHR would have “enormous” benefits.
“For example, in my own field of paediatrics, complex—often genetic—disorders associated with multi-organ dysfunction can be benefited enormously by having a record of these rare disorders and the deficits that they can cause.
“Another example is in medication tracing for people who have substance abuse difficulties. It would be very, very helpful if we had electronic records and real-time monitoring of prescriptions.”