A political firestorm erupted last week over the Australian government’s move to create a shareable national electronic health record for all 24.7 million of its citizens by December of this year. Unless an individual opts out of having a My Health Record by 15 October 2018, the government will create one for them that will be kept for 30 years after the person dies, or for 130 years after a person’s birth if their death date is unknown.
The government and many health care associations such as the Royal College of Australian General Practitioners, the Pharmacy Guild of Australia, and the Australian Healthcare and Hospital Association (AHHA) have been touting the benefits of the system. The AHHA states such an e-health record will lead to “better coordination of care among multiple health care providers, better informed decisions on health care that involve both the patient and the health care provider, reduced duplication of diagnostic tests, fewer adverse drug events and reduced hospital admissions.” All have been pleading with the 6 million Australians [PDF] currently with a My Health Record not to opt out, and for everyone else to allow one to be created for them.
However, numerous privacy advocates, health practitioners, and even the former director of the Government's Digital Transformation Agency contend that the medical benefits being claimed don’t stack up, and further assert there are significant security and privacy risks involved.
For example, both the parliamentary library and Queensland Police Union admit that while the government has been claiming that the information in a person’s My Health Record won’t be turned over to the police without a court order, the actual My Health Record legislation contradicts that claim.
Furthermore, they point out, the legislation allows for many other government agencies to demand access to the information in a person’s health record, including the Australian Tax Office if it believes public revenue is threatened. Secondary access to the data [PDF] in the e-health records by third parties is also being allowed, which Australia’s Human Rights Commissioner has cautioned may place patient information at risk.
On July 16―the first day possible to opt out of having a My Health Record―over 20,000 Australians decided to do just that, a number that seemed to catch the government off guard. Though it has tried to play the number down, the government has been forced to defend its approach ever since.
A bit of background into how the idea of a My Health Record came into being is helpful to understand why the government is currently on its back foot.
In the late 2000’s, the then Labor government decided, with bipartisan support, that every Australian was going to have the opportunity to register to get a shareable, personally controlled electronic health record (PCEHR) as part of a national system. The record would contain a summary of an individual’s health information, uploaded by health care providers as well as individuals. Furthermore, individuals would be given the capability to control what health information in their record could be seen and by whom.
The government invested some AU $467 million between 2010 and 2012 into developing the first release of the PCEHR, which was rolled out to the public in July 2012. The uptake was very slow, with only about 400,000 e-health records created in the first year of operation [PDF]. The system’s implementation left a lot to be desired, with health care providers and patients finding it hard to use, unreliable, and not useful for medical diagnosis and treatment. These problems required the government to spend another AU $234 million in an attempt to improve the system’s effectiveness.
In November 2013, the newly elected Liberal Coalition government sponsored a review of the system by health and information technology experts who made 38 recommendations to the Minister for Health in May 2014 listing how the system could be improved. The most important recommendation made was to change the existing opt-in strategy to an opt-out approach instead.
In May 2015, the government decided to invest another $485 million in a “rescue package” to redevelop the system. Along with rebranding the PCEHR as “My Health Record,” the government decided to test the improved e-health record in January 2016 with an opt-out, instead of opt-in, choice in order to see whether that would indeed increase its use. The trial would take place in Australia’s Far North Queensland and the New South Wales Nepean Blue Mountains regions, and involve about 1 million people who would have an e-health record automatically created for them by the government.
In late 2016, the trial report [PDF] was released. It stated that only 1.9 percent of those in the trial had opted out of having an e-health record. The report further advised that if the government chose to maintain an opt-in approach nationally, its new e-health system would eventually collapse.
As a result of these findings, the government decided in May 2017 to make My Health Record an opt-out system, with the opt-out period to begin sometime before September 2018. Interestingly, neither the public nor health care practitioners paid much attention to the announcement; the reason for that seemed to be that few people had much faith that the e-health system would survive much longer anyway.
Indeed, use of the e-health system throughout the remainder of 2017 supported that view, for by November, the number of people registering for a new My Health Record was falling rapidly [PDF]. In addition, extremely few health care professionals or individuals were uploading new information or accessing the information in the existing 5.2 million e-health records. One reason was that despite the nearly AU $2 billion being invested, the record system and the information found in a typical My Health Record were still seen as not being very useful for much of anything.
The government’s drive to create an e-health record for every Australian continued to be mostly ignored until a few weeks ago when the opt-out period materialized. The security and privacy issues involved then began to be debated in earnest, with the government saying there was nothing to worry about, while privacy advocates took exception to the optimistic proclamations. Not helping the government’s security promises was that Singapore suffered a major data health care breach last week, which included sensitive information on the country’s prime minister. The Singapore breach, and the fact that Australian health care facilities have increasingly been prime cybercrime targets, has added fuel to the opt-out or stay-in debate.
Government ministers are struggling mightily to reassure Australians that their My Health Record will be secure and their privacy respected, but it is unclear how much credibility anyone puts into those promises. The government has shown no hesitation in the past, for instance, to use highly sensitive—and what was thought by Australian’s to be private—social benefits information to attack its critics. Many Australians now believe it will not hesitate to use health information in the same way.
The final number of Australians that will choose to opt out of having a government created My Health Record by 15 October is anyone’s guess. The government is reportedly expecting about 10 percent of the country’s population will do so, but it is not worried that this will have much impact on the future viability of its e-health system.
Even though most Australians will likely end up having a My Health Record by the end of the year, it doesn’t mean the government can declare victory by any means. Its e-health record system must quickly prove more beneficial and easier to use for health care practitioners and individuals than is currently the case, while avoiding any significant data breaches or privacy leaks. Otherwise it will continue its past history of being ignominiously ignored until the system eventually suffers a slow, and very costly, death.
Contributing Editor Robert N. Charette is an acknowledged international authority on information technology and systems risk management. A self-described “risk ecologist,” he is interested in the intersections of business, political, technological, and societal risks. Along with being editor for IEEE Spectrum’s Risk Factor blog, Charette is an award-winning author of multiple books and numerous articles on the subjects of risk management, project and program management, innovation, and entrepreneurship. A Life Senior Member of the IEEE, Charette was a recipient of the IEEE Computer Society’s Golden Core Award in 2008.