As of 12 September, around 900,000 Australians had opted out of My Health Record. This represents three percent of those citizens and residents who are eligible for a Medicare card or a Department of Veterans Affairs card.
The figure includes opt-outs via the website and call centre, but not those being processed by paper forms.
There was a "significant surge" in opt-outs at the start of the opt-out period, and then a "significant drop-off", echoing the pattern seen in the trials of Australia's centralised digital health record system, officials from the Australian Digital Health Agency (ADHA) told the Senate Senate Community Affairs Reference Committee on Monday night.
"This is ... significantly lower than the original forecast we have anticipated, and in line with other international examples [including the UK and Austria]," said Tim Kelsey, chief executive officer of ADHA.
During the same period, around 180,000 chose to create a My Health Record.
The ADHA reported that by the end of this month, 75 percent of public hospital groups will be connected to My Health Record. Queensland and New South Wales are already fully connected. The rest will be completed by the end of the year, except for South Australia, which will be completed in the first quarter of 2019.
Private hospital groups will be 55 percent connected by the end of September.
The ADHA said that states began heavily investing in their My Health Record connections when the system was first launched in 2012.
"The private hospital groups tended to wait until they made that investment," said ADHA chief operating officer Bettina McMahon, with most only starting to invest in the last two years.
"They waited until there were more other healthcare providers connected, and waited until there were more consumers involved. They also wanted to have a broader demonstration of the benefits of connecting before they made that investment themselves."
ADHA figures continue to show that very few people use My Health Record's access controls.
As of 2 September, with 6.1 million My Health Records created, only 16,848 people had set a "record access control", a PIN giving access to the entire health record, and only 4,109 had set a "limited document access control", which covers a single document.
Some 136,644 people had chosen to receive email or SMS notifications when their My Health Record is accessed.
These access and privacy controls were slammed by some witnesses, including Paul Shetler, the former head of the Digital Transformation Office (DTO), now called the Digital Transformation Agency (DTA), who previously been highly critical of My Health Record, and continued his critique on Monday night.
My Health Record doesn't have the functionality needed by patients and practitioners, Shetler told the committee, "nor the privacy protections that such a honeypot of extremely sensitive data would require were it rolled out across the country".
"I also believe the shift from opt-in to opt-out was a mistake, and that it would have been unnecessary if the product had met clearly-defined needs of patients and practitioners," he said.
Shetler called for the opt-out period to be extended, and for the government to pause, acknowledge what they're hearing from the public, and take time to reset the program. The decision to move from opt-in to opt-out should be reversed, rather than people being "dragooned" into using it
Shetler recounted his time with Swift, the company with a monopoly on international money transfers.
"When we had products we couldn't sell, what we said was, it's mandated ... This to me seems very similar. The government wasn't able to get people to adopt it. It couldn't get a network effect. It couldn't actually meet user needs. And so I said, we're going to draft you into this," he said.
"Doing nothing is not an option any more. In its current form, I believe the program will fail."
According to Grahame Grieve of Health Intersections, the current My Health Record was state of the art in 2007, and as he said in his submission, that's a problem.
"In the last decade, there's been a lot of change, smart phones, etc, and we're all used to the way the web works: a set of federated systems that act together to serve us. We take this for granted -- banking apps, payment services, weather information, and it's what myGov is about," he told the committee.
"But the My Health Record is still frozen as if all this hasn't happened: inconvenient, inflexible, with poorly controlled information access rules ... Australia is lagging behind other countries which are prototyping innovative digital approaches to solve healthcare problems."
Individual document controls were used only 10 times during the electronic health record trial.
Individuals will have an extra month to opt out of the digital health record in a move that buys the government more time to fix the related legislation.
No, Minister. It's not just about law enforcement access to digital health records. The Australian government needs to address all the concerns. A media circus in a playground won't help.
The Australian Medical Association has said privacy experts are comparing My Health Record with a utopian ideal, not a doctor's lived reality.
It's time for the Australian Digital Health Agency to take a strategic approach, but it seems it would rather fix problems 'on the fly' or just ignore them.