The spotlight falls on the e-health agency as it embraces its moment of truth

By Harley Dennett

Wednesday July 18, 2018

The government’s former digital boss has sharply criticised the digital health agency for ‘not learning from history’ as the campaign to ensure the survival of the My Health Record system has its moment of truth.

When a backlash from parts of the Australian community questions the worthiness of something core to your agency’s function, is it better to keep low and wait out the storm? Or should you go in fighting?

The Census team at the Australian Bureau of Statistics, the Department of Home Affairs secretary Michael Pezzullo, and the Australian Human Rights Commission all chose the latter when faced with that decision. And this week so has the Australian Digital Health Agency as the opt-out period begins for its My Health Record system.

Across Australia stories have been planted in radio, television, print and online extolling the benefits of a digital health record, often by telling the stories of people who won’t overdose thanks to the ability to cross-check medications, or medical professionals who want to make the best decisions for their patients.

Countering that message is the numerous stories, opinion pieces, and social media posts from Australians arguing why they will be opting out.

The agency has hit back at some of the more outrageous claims, while keeping silent (at least as far as we could see) on the issues above its pay grade — such as the willingness of ministers to weaponise government-held sensitive personal data against their critics. On that front, let’s just say there’s a lot of wiggle room.

The after action report on this opt-out deployment will be well worth reading for many across government.

These numbers are no sign of success

Paul Shetler

In the meantime, the agency has faced friendly fire over the validity of some of its proclaimed success factors.

Paul Shetler, former CEO of the government’s Digital Transformation Office, revealed on ABC’s Radio National this morning that when he was first briefed on the system three years ago, only around 10% of those who had signed up voluntarily were actually using the system because, for the other 90%, their doctors weren’t using the system.

While there are around 6 million Australians with a My Health Record now, only a tiny minority are getting any benefit from it. It’s like a MySpace account you probably haven’t used in years, Shetler explained.

“If when this was built, [the government] had looked what are people looking for, what are the actual user needs we’re meeting with this, perhaps people would be more willing to both sign up and use it.

“What you have is you’ve spent over $2 billion on a piece of software without a clearly defined set of needs that it meets, either for the practitioner or the patient and as a result you’ve now got to make it mandatory.”

This is in theory a really good idea to have this data available, Shetler said, but moving to the opt-out model “after a whole series of tech-wrecks, it doesn’t inspire a lot of confidence”.

Yesterday the Prime Minister Malcolm Turnbull confirmed around 20,000 people have opted-out of the My Health Record system online on Monday, the first day of a three month period that people can do so.

Those aren’t numbers to be proud of, Shetler warns, particularly has they had to opt-out under very difficult circumstances, with long wait times on hold before being able to do so over the phone.

“If you were launching a new product and you had 20,000 willing to wait for an hour and a half on the phone,  to be put on hold and go through a very obscure process, and they signed up, you’d say that was a pretty amazing demand for that product. That’s a pretty successful product. Now reverse that.”

E-health agency ‘didn’t learn from history’

The roll-out of My Health Record has a lot of similarities to the scrapped Care.Data system in the UK, Shetler says.

“When it was introduced it was introduced as an opt-out system, people didn’t particular like it. They had concerns about the privacy of their data and ultimately it had to be stopped.”

Like the UK’s failed effort, in Australia the My Health Record system was also not designed with privacy and security settings appropriate for the opt-out approach the government has now switched, he said.

“It seems to be systematic of how the government handles big IT and these big projects … [blame] has to go back to the digital health agency, they clearly have seen what’s worked and didn’t work in other countries, and they didn’t learn from history.”

Shetler says he “probably would” opt-out, if he were an Australian citizen, in part because of the variety of reasons the data can be accessed without consent, including for the protection of public revenue.

Disclosure: this reporter, prior to joining Private Media, had undertaken work for the Department of Defence to encourage Defence members and their families to voluntarily sign up to the Personally Controlled Electronic Health Record as the My Health Record was then known.

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