Digital Heath Agency: ‘No conspiracy’ to keep My Health Record opt-out quiet

The CEO of the Australian Digital Health Agency (ADHA) – the body responsible for implementing and operating the My Health Record – has rejected claims Australian’s right to opt-out of the electronic health record system is not being sufficiently communicated.

Australians will have three months from mid-July to opt out of having a My Health Record automatically created for them. After the opt-out deadline has passed the record cannot be deleted, only made “unavailable” to health providers and individuals, the Department of Health revealed last year.

Speaking at the National Press Club in Canberra today, ADHA chief Tim Kelsey highlighted the clinical benefits of the majority of Australians having electronic health records, and countered claims that the agency was keeping the opt-out right quiet to achieve it.

“There’s no notional opt-out rate target or anything. My job is to make sure that everybody is aware of their rights to opt-out and has been able to exercise them. So, no conspiracy,” he said.

“We are very transparently going to be explaining to all Australians what those rights are in ways that are suitable and in ways that they want us to,” Kelsey added.

The announcement regarding the opt-out window – which will run from 16 July to 15 October – was made at 5pm on Monday last week.

The opt-out approach – since its inception – has been seen as the most effective way of boosting take-up of the e-health record.

“The argument is opt-out drives clinical benefits faster. The clinical benefits … reductions in harm caused to people through things like medication error will be dramatically improved, the speed of those benefits will be more quickly realised if the system moved to opt out and not opt in,” Kelsey explained.

However, the requirement to opt-out to avoid a record being automatically created has drawn criticism, with some arguing Australians are simply not aware My Health Record is happening.

Communications about the scheme will be going out via “a number of government departments” through various channels, Kelsey said. The agency has a communications budget of around $100 million, he added, “it’s really significant”.

Kelsey, previously national director for patients and information at the UK’s National Health Service, explained different Australian communities would receive different communications about the record, and there would not be a blanket mail-out.

While sending a letter to every household detailing the scheme and opt-out option was considered it was soon ruled out for its potential to “create tremendous anxiety for people”, resulting from letters sent to deceased people and people who have just left home.

“Letters are deemed to be a means of creating all kinds of perverse outcomes and as a result people will not be getting an individual letter,” Kelsey said.

“Those people when they’ve been asked and during the course of the opt-out trials have said to us they want to be able to talk to people about some of the issues that are raised, when they’re considering opt-out. So we’ve designed the communications activities to cover the country, but in a way that is sensitive and evidence-based,” he added.

The decision to shift to an opt-out model in order to boost uptake of the eHealth record followed trials in Queensland and New South Wales. Those trials were staged in the wake of a 2013 review of the system – originally named the Personally Controlled Electronic Health Record (PCEHR) – that concluded the system should shift to an opt-out approach.

The 2017-18 federal budget earmarked $374.2 million over two years for the expansion of the system as it moved away from opt-in.

Kelsey said it shouldn’t be surprising that little coverage of the opt-out period had been seen yet.

“You don’t start promoting awareness of the right to opt out before people can actually opt out,” he explained, adding that from July 16 “you will see a very extensive, very visible information service launched”.

Following the opt out period, for those that have not opted out, a record will be created but it will empty until it is ‘activated’ by its owner. It will then be filled with the previous two years' worth of Pharmaceutical Benefits Scheme (PBS) and Medicare Benefits Schedule (MBS) data.

“There is no Big Brother and people may be surprised that when opt out comes and their record is created, there is literally nothing in it until it’s activated,” Kelsey said. After it is populated with PBS and MBS data it will contain “nothing else that’s in your past because we can’t do that” he added.