After years of trying carrots, the federal government is getting out the stick by controversially forcing all Australians to opt out of the My Health Record (MHR) program or have one automatically created for them by year’s end.
Some 5.7 million Australians have so far joined MHR, which was created in 2016 in a realignment of the Personally Controlled Electronic Health Record (PCEHR) project – which progressed in fits and starts after being favoured by government policy at the beginning of the decade.
The My Health Records Act 2012 laid out the goals of a voluntary electronic healthcare system that would overcome fragmentation; improve the availability and quality of health information; reduce the occurrence of adverse medical events and the duplication of treatment; and improve the coordination and quality of healthcare provided to healthcare recipients by different healthcare providers.
Voluntary take-up was well below expectations, however, and national expansion of MHR was flagged as a key healthcare priority in the National Digital Health Strategy – which was approved by COAG last year and backed with a $374.2 million Budget allocation over two years.
With registrations stagnant, the Australian Digital Health Agency (ADHA) has set a three-month period – from 16 July to 15 October – during which Australians will need to opt out of participation or have a record automatically created for them.
Australians will be able to cancel their MHR or create one at any time, if they opted out during the set period.
Helping providers work together
Australia was an early adopter of paperless electronic health record (EHR) systems within hospitals and medical practices – largely thanks to financial incentives given to clinic operators for years – but efforts to improve interoperability through ubiquitous health information exchange (HIE) systems have historically struggled to gain traction.
That’s why the latest move has pleased medical bodies, which continue to wrestle with a plethora of data standards and often rely on paper as the lowest common denominator method of exchanging information about patients.
The Australian Medical Association was pushing the federal government to shift the system to an opt-out model as early as 2011, with then-president Dr Steve Hambleton arguing that low take-up would compromise practitioners’ interest in the system.
“We predict it will be many years before the PCEHR becomes ubiquitous in health care,” he wrote at the time.
Kickstarting the MHR program has required a massive alignment of healthcare providers around the country, and the government rolled out a barrage of testimonials – from bodies representing arthritis care, nursing, emergency medicine, aged services, rural health practitioners, public health officials and even the National Farmers’ Federation – to back its efforts.
A pilot program in the Riverina town of Berrigan, NSW is being used as evidence that an integrated HIE can improve multi-channel healthcare delivery.
More than half of Berrigan’s 950 residents were set up with MHR and the town’s local GP clinic, pharmacy, aged care centres, and local hospital were interconnected to allow patients’ medical records to follow them through the various stages of the healthcare system.
Patients report easier transfer of patient treatment and medication histories had proven much easier than having to track their own interactions with multiple providers on paper.
Privacy and security concerns
Such positive results are helping paint the picture of MHR as a tool for healthcare efficiency – and overcoming common barriers to adoption that, according to one recent study, included user resistance and lack of skills, concern for return on investment, and lack of administrative and policy support.
Clinical issues aside, the administratively-focused opt-out policy also represents a philosophical change of perspective from the consumer-centric privacy protections that were introduced through European privacy legislation.
General data protection regulation (GDPR) legislation, which from May 25 governs the management and exchange of all EU citizens’ personal information, explicitly require patients to consent to the collection of any kind of personal data.
And while the Australian government’s decision for an opt-out system may be pragmatically valuable, some privacy-conscious observers still aren’t ready to trust the government to protect this information.
Robert Merkel, a lecturer in software engineering with Monash University, wrote in a recent editorial that data breaches such as the recent ransomware attack on Family Planning NSW had soured him on MHR.
The government says it has handled the security aspects around MHR – but many Australians will be hard to convince. A recent 3GEM-Veritas Technologies study found that 38% of surveyed adults would not consent to the sharing of their health and medical records.
The government’s move to impel participation in the MHR program mirrors similar efforts in countries such as Switzerland, which last year began transitioning its healthcare operators to an interoperable health record based on the 2015 passage of a national law.
Noting the factors required for a HIE rollout to be successful, one recent multi-country analysis flagged concerns about security, service continuity and privacy as well as the complications of legislative, inter-jurisdictional complexity and issues around acceptance.