On the 15th of October this year every Australian citizen will have a digital health record created for them under the government’s My Health Record system, unless they explicitly request otherwise. Those who do not wish to have a digital health record stored in a national database have three months from July 16th to opt out.
The ehealth initiative is similar to many other digital health record systems in developed nations and has sparked debate over the potential impact of data and digital technology on health systems.
Proponents of digital health records claim aggregating medical data improve cost and quality outcomes and lays the foundation for advanced use cases like artificial intelligence and machine learning. But critics argue the benefits are unproven and the privacy and security risks too great in some instances. And they argue that scope creep could create unexpected consequences for health consumers.
In Australia, the system will soon be tested and will likely include health records of patients despite a lack of their explicit consent. While it is not known how many people will opt out of a digital health record, overseas comparisons and murmurings of a lacklustre awareness campaign suggest that come October 15 most Australians will have a digital health record.
My Health Record (MHR) is a federal initiative and part of the government’s move to use data and technology to improve the wellbeing of Australians. The digital record is an online summary of health information which can be accessed by patients and their healthcare providers. It has been in the works for over five years and is currently available as an opt-in service.
Tim Kelsey is CEO of the Australian Digital Health Agency, (ADHA) the statutory authority in charge of My Health Record. He has an impressive history in the UK with similar digital health projects and is also a former investigative journalist.
Last Thursday Kelsey was on the receiving end from journalists at a national press club where he faced a flurry of questions on the new scheme’s security and privacy measures, the opt-out period, and what was being done to inform the public.
NewsCorp’s Sue Dunlevy asked Kelsey why the opt-out period for a system involving some of people’s “most sensitive personal information”, which potentially includes data on mental illness, abortions and sexually transmitted diseases, would not be accompanied by a national television, radio or print media awareness campaign.
“Last week under the cover of the royal wedding you announced the opt-out period, almost guaranteeing that it got no media coverage,” Dunlevy said.
“Could you forgive Australians for accusing you of being involved in a conspiracy to keep them ignorant about this record in the hope that you will maximise the number of people given one of these record because they will never know that they had the chance to opt out?”
Dunlevy’s question cut to the core of one of My Health Record’s major criticisms – the switch to an opt-out system, where, failing to explicitly communicate a desire to do otherwise, Australian will have a digital record created.
Kelsey conceded it was an “extremely fair observation” but argued his job included ensuring the public was aware of their opt-out rights and he intended to do that. He also stressed that while records would be created, personal information would not be uploaded to them without a patient’s consent and “in every case, in every document, you have complete control”.
The opt-out switch
Kelsey said he and the ADHA were basing their opt-out awareness campaign on research that suggested promoting “clinical and consumer champions” and ensuring it was possible for people considering opting out to discuss the issue. A tactic he said would be more effective than a traditional media blitz.
He confirmed the opt-out campaign would not include a national television campaign nor would people be receiving individual letters regarding their opt-out options, with the latter having the potential to create “all kinds of perverse outcomes”, according to Kelsey. Asked about the campaign budget, Kelsey hesitated before estimating it to be $100 million.
“We’ve designed the communications activity to cover the country, but in a way that is sensitive and evidence-based. So that’s what we’re doing,” Kelsey said.
“[There is] no conspiracy,” he said, also noting there was no opt-out target figure for his agency.
“We are very transparently going to be explaining to all Australians what those [opt out] rights are in ways that are suitable and in ways that they want us to.”
An ADHA spokesperson told Which-50 the opt-out campaign would “include, but not limited to print, video, radio, social media, and local events”. The agency has also made a firm commitment to ensuring indigenous and rural groups are well informed. When asked how much of the awareness campaign budget would go to traditional media channels, an ADHA spokesperson provided the following breakdown:
The Agency has committed over $114m to consumer communication activities including:
o $27.75m to support the development, design and delivery of communications collateral and support
o $52.38m has been allocated to support education and training for all registered healthcare providers
o $34m for a consumer call centre that will support public enquiries on My Health Record, and assistance for people choosing to opt out. This also includes an opt out portal that will be activated to allow consumers to exercise their right to opt out.
The awareness campaign will begin at the same time as the opt-out period does on July 16th. The government argues this is to avoid confusion.
Kelsey defended the move to opt out saying it would accelerate the benefits of My Health Record.
Evidence from Australian opt out trials and “other sources” suggests the benefits of a digital health record system are realised much more quickly by moving to opt out, and the switch had “great support in the clinical community”, according to Kelsey,
Which-50 asked the Australian Medical Association if they were satisfied with the three month opt out period.
“This is more a question for the general public, as the opt out period is for patients and consumers to make a decision about their involvement – and it will be important for the ADHA to continue their communications to the wider public to inform them of the option to opt out,” an AMA spokesperson said.
The spokesperson also told Which-50 they “strongly support” moving to an electronic health record but it was not their role to endorse government policies or programs.
A digital health record system has been available to Australians since 2012, but always on an opt in basis. So far, according to the ADHA, less than a quarter of Australians have one. Moving to opt-out will almost certainly drive up that figure and, says Kelsey, a similar switch in Austria resulted in only 3 per cent of citizens opting out of an electronic record citizen. More records will produce more benefits for patients, according to Kelsey.
Srini Venkat, Vice President, Insurance and Healthcare Financial Services Global Business Unit, Oracle, agrees increasing the number of records is necessary to make the system effective.
According to Venkat, for the a digital health record system to “be effective” in Australia it needs around half the population involved and where digital health records have been successful overseas, the most important initiative has been to get the records online.
Venkat told Which-50 the cost of healthcare is growing faster than the inflation rate. Coupled with an increase in consumption and an ageing population, the current trend is “unsustainable” and a digital health record will slow the trend, according to Venkat. He also says it has the potential to immediately save lives.
“In an emergency situation, having that [medical] information accessible readily could be life or death. Ultimately the electronic record, it drives costs, and also quality outcomes.”
“So it’s a question of who pushes that. In this particular case, some companies we’ve talked to in Australia feel like the government hasn’t done enough. I think now it’s coming to a place where there needs to be a push to get that adoption,” Venkat said.
Australia is particularly well suited for a digital health record system, Venkat says, because of it social health system and its existing medicare and PBS data. However, it is critical the system is “bound with privacy and security protections underneath it”.
But the privacy and security of the My Health Record system is questionable, as is its usefulness, according to Dr Bernard Robertson-Dunn, who chairs the Health Committee at the Australian Privacy Foundation. He told Which-50 he is “not convinced” of the validity of many of the arguments around digital health records and health IT.
He argues the My Health Record system has been misrepresented by the government, better alternatives were available, and aggregating such a large amount of data creates a “honeypot” for hackers.
“There is doubt about the usefulness of MHR,” Bernard Robertson-Dunn said.
One of his chief concerns is the data being uploaded. While it creates privacy risks, he says, the data is of limited use and lacks necessary context. This is a fault illustrated by the government’s reluctance to share information on the systems use, he said.
“It’s useful to point out when the government says the system is being used, they are referring to people putting data into it. They have made no real claims as to the usefulness of the data coming out of it.”
“They’ve certainly have not said how much money they’ve spent out of the $2 billion dollars they would spend on it. Or how many lives they’ve saved or what the benefits are.”
The government has trumpeted the possible benefits of the scheme, saying it has the potential to reduce the number of duplicate diagnostic test by up to 14 per cent and reduce the number of adverse medication events that cause avoidable admission into hospital by 2 to 3 per cent.
According to the privacy advocate, it’s a “one-sided view of this system” and fails to adequately describe the risks and costs of the system. One of those cost is GP’s time, according to Bernard Robertson-Dunn, who said they will be forced to duplicate data for the new system, and ultimately consultation time and quality would suffer.
The AMA told Which-50 they do expect My Health Record will impact practitioners time with patients initially, but their “hope is that over time however, the record will not only save practitioners time, but provide a tool for further improving the care they provide – based on a more complete patient record”.
The organisation representing registered medical practitioners also said they believed the government is best placed to manage the system.
Update 28/05/18 08:55: An ADHA spokesperson contacted Which-50 to provide advice on the time it would take to upload information to a patient’s My Health Record. According to the ADHA, initial record uploads “typically takes three to four mouse clicks and can be completed in under a minute”.
But Bernard Robertson-Dunn contends, “There were alternative solutions that the government could have gone for, which basically involves interoperability between all the health care systems.”
The alternative solutions included systems that would minimise the government’s role while still allowing a flow of data between health professionals, according to Dr. Robertson-Dunn. He argues those systems exist in the UK and Sweden and provide patients and medical professionals portal access to health data, at a lower cost and lower level of privacy intrusion.
“It’s not perfect but it’s better than a national database [like My Health Record].”
He also shares the concern over the opt out switch, saying the change is “somewhat dangerous” and creates a potential for “scope creep” where GPs may be mandated to upload additional patient data.
“We just don’t know. That uncertainty is a risk,” Bernard Robertson-Dunn said.
“People are quite willing to trade their privacy against benefits. But, in that there’s not a lot of benefits to the patient or the GP, the privacy risks seem unbalanced.”
Request for security and privacy of health records are reasonable and Bernard Robertson-Dunn’s point is a salient one. While the potential benefits of a digital record system are considerable, the system must provide a level of security and privacy to instill confidence in its use. The opt out change of My Health Record will almost certainly provide it with the user numbers it needs to provide benefits. Whether those benefits can exceed the negative optics of a change to opt out remains to be seen.