Trust is a critical precondition of creating a digitized society, and by any measure, Australia's implementation of the My Health Record system is failing the trust test.
In mid-November 2018, the federal government in Canberra extended, for a second time, the deadline for people to opt out of the scheme.
The deadline was meant to be Nov. 15, 2018, but the system was crashing under the weight of people seeking to opt out. The issue was snarled up in the Senate, with minor party senators seeking to push through changes.
The immediate result was the only one possible: the Government extended the deadline to Jan. 31, 2019. The hope is that by then more Australians will come to understand and trust the concept.
Good idea, not-so-good implementation
The idea of My Health Record sounds fair enough, and proponents say it will save the health system money, drive efficiency and, more importantly, save lives.
By giving health care professionals access to information on medications and allergies, immunization records, and summaries of the hospital and general practitioner care, the expectation is that there will be a reduction in the 27 percent of clinical incidents in Australian hospitals currently caused by medication mismanagement.
The Australian Government also says it can help prevent some of the medication misadventures that see more than 230,000 people end up in a hospital each year, almost four times the annual number of people who are hospitalized after car accidents.
In one often-cited example, people who are traveling away from home and who are involved in accidents or become ill will theoretically receive faster and more appropriate care if health professionals can access their medical records.
While this sounds positive, a large number of people are unconvinced.
Australia has had an "opt-in" electronic medical records system in place for five years, and in that time 6 million Australians have signed up out of a population of just under 25 million.
When this was not considered fast enough, the Government announced an "opt-out" arrangement where unless someone went online and opted out an electronic medical record would be created for them.
More than 1 million Australian's have decided to "opt out," and so many others were trying to do so that the system went into meltdown in mid-November.
It was not the promising start to the digitization of public information that the Government hoped for, and it may have something to do with the undermining of public confidence.
Additional Factors that Mattered
In 2016, the national social security agency Centrelink was mired in scandal over its “robo debt” initiative, an automated debt recovery system that calculated and charged debt based on aggregated data.
The result was a significant public opinion backlash and the admission that one in six of the notifications was wrong, while the scheme had recovered only AUD 84 million of the AUD 350 million identified initially.
Although Australians are willing to give up some of the digital privacy to law enforcement agencies to fight crime and terrorism, they have been unimpressed by revelations from the telecommunications industry that a wide range of government agencies, from local councils to Australia Post, are accessing phone records to chase up fines and infringements. So, “data retention” powers designed for genuine issues of public safety are being used to enforce parking fines.
In this environment, digital trust has already been eroded, and some of this has rubbed off onto the My Health Record initiative.
Under the provisions, people can set access details for their profile restricting who can and cannot see their records. Although this is good in theory, the reality is that the vast majority of the population are not digitally literate enough to understand this and follow through with execution.
Informed consent is a great idea, but how knowledgeable a person is can be problematic, as can their knowledge of what it was they are consenting to.
Trust has also been eroded with reports that the head of the agency implementing the My Health initiative has had part-time consulting roles with a major private sector health provider, is chairman of a digital health startup and has a consulting relationship with another.
Then there is the fundamental question of whether the data is secure. Already there have been 99 data breaches of the system since the "opt-in" scheme began five years ago, although the Government assures us that no severe breaches have taken place.
There is also the integrity of the data itself, which is supposed to be made anonymous when aggregated and made available to third parties.
In 2016, the government released a dataset comprising information on a large number of patients going back 30 years, which was intended to be anonymous.
IT researchers at Melbourne University, however, promptly reidentified the data and linked it to the individuals concerned.
Confidence in the “market” for health data was further undermined by October 2018 reports that a health app was selling patient information to law firms, which were then soliciting business from people with severe injuries and medical conditions.
Digital is a Human Issue
Given this context, it seems natural for the public to be suspicious about My Health Record and the responsibility is firmly with the Government to establish a framework which helps improve levels of trust and confidence.
It goes not just for My Health Record, but the broader issue of data and digitization. As one prominent commentator said recently, the danger is that the Government “bungling” could put at risk all the considerable benefits that could flow from sharing data in the digital economy.
He pointed to the fact that while, on the one hand, the Government was talking up My Health it had reduced funding to the Australian Bureau of Statistics, the national data collection agency, by 30 percent over the last 10 years. Such a move would not seem to be consistent with the push for big data analytics.
So while we increasingly have the technology for digitization, it appears the problem still lies with humans and our governance trailing behind, as is community education.
For as long as it continues to do so the lack of trust will continue to undermine the optimal implementation of the digital world.