900,000 individuals opting-out of My Health Record was ‘far lower than we were expecting’

By Harley Dennett

Tuesday September 18, 2018

Late last night officials from government health agencies and the national privacy watchdog appeared in front of a Senate committee into the medical database system known as My Health Record.

Tim Kelsey, head of the Australian Digital Health Agency, said the opt-out rate by internet or call centre was around 3% of Medicare card holders, or around 900,000 individuals. That figure does not include paper opt-out forms.

It’s now nine weeks into the three month opt-out window. Approximately 20,000 individuals chose to opt-out on the first day of this period, while 181,000 have opted in over the same period. 136,000 individuals have requested to notifications whenever their record was accessed.  Six million people voluntarily signed up to the scheme under the earlier implementation before the government decided to switch to the opt-out model.

The opt-out response has been in line with ADHA’s expectations and international experiences like the UK and Austria, according to the officials.

Health Minister Greg Hunt put an even more positive spin on the results this morning, telling the Today show that “the opt-ins are far higher than we were expecting, the opt-outs are far lower”.

Critics of the privacy controls and handling of the records system have been dismayed that the number of individuals taking no action has been interpreted by ADHA and the minister as support for the implementation.

“This is ultimately about saving lives and protecting lives,” Hunt said.

“At the moment, six-million Australians are operating for six-years without incident. It has the potential to be, I think, the best system in the world. And in the end it’s about giving people access to their own medical records for the first time on their own terms where they have complete control over it.”

Third party access to be decided ‘on merit’

Caroline Edwards, deputy secretary of Health Systems Policy and Primary Care at the Department of Health, told the hearing that third-party access would be allowed for medical and public health researchers — however only to de-identified data.

Private companies would also be allowed access, but those would be decided a case by case basis as long as it’s not for commercial purposes:

“If they’re researchers for a private company, they would need to put in a submission explaining what the purpose of their research was,” Edwards said. “Each application would be assessed on its own merits, but it wouldn’t be able to be used for commercial purposes.”

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