900,000 Australians have opted out of the nation’s new digital electronic health record system due to privacy and security concerns plaguing the My Health Record database
Countries around the world continue to attempt creating a single national electronic health record (EHR) system. And though billions have been spent, success remains elusive. Australia (AU) also has joined the club of nations struggling to launch a shareable digital health record system. But though the country does have a national healthcare system, a significant number of Aussies have declined to participate in a national EHR system as well.
Privacy and Security the Biggest Challenge
In February, Dark Daily reported that Australia’s largest pathology laboratories signed agreements with the Australian Digital Health Agency (ADHA) to join the nationwide EHR project. And that, though they praised the potential of the AU’s My Health Record, a doctors’ advocacy organization also voiced concerns about functionality, interoperability, and added burden placed on providers.
My Health Record is a 16-year $2 billion (AU) project to create a digital database that contains the medical health records for nearly all of the country’s 24.7-million citizens. But the system’s rollout has been far from smooth. As of September 12, roughly 900,000 Australians had opted out of the program, which has been plagued by privacy and security concerns, ZDNet reported.
The developments in Australia concerning the effort to implement a single electronic health records system for patients are useful for those pathologists and medical laboratory managers who want to position their labs to support services like these. Australia is not the only country that faces challenges in the implementation of a single, nationwide EHR.
“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,” wrote Contributing Editor Robert Charette in IEEE Spectrum. “Its e-health record system must quickly prove more beneficial and easier to use for healthcare 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.”
Flawed and Unsecure
Technical glitches marred the mid-July start of the government’s opt-out period, but the biggest issues facing My Health Record are its ongoing privacy and security difficulties. The Australian Privacy Foundation (APF) argues My Health Record is a flawed “summary system” that offers minimal value to consumers or healthcare providers while exposing Australians to potential security breaches.
“The risks to your privacy, confidentiality, and information security need to be balanced by the value of any of your health records,” APF states on its website. “In our assessment, because it is not really your health record but a less-reliable copy, the My Health Record has little value for either your clinicians or you as a patient: you both need the real thing. This means the risks to you may be high enough to question whether My Health Record is worth it.”
Not only have privacy advocates questioned My Health Record’s threat to information security and confidentiality, the former head of the federal agency tasked with building the system also has questioned the security of the online system.
Paul Shetler, a citizen of the UK and former Chief Digital Officer of the AU government’s Digital Transformation Agency (DTA), told the Australian Broadcasting Corporation he would “probably” withdraw from My Health Record if he were an Australian citizen. One of the main issues is My Health Record’s privacy settings automatically provide general access to all information within the record unless consumers take the time to set access codes to restrict access. (Photo copyright: diginomica.)
Stuck in a Time Warp
My Health Record does provide consumers with the ability to set controls that restrict access to their records. However, according to another ZDNet report, of the 971,252 records created during the EHR’s trial period, only 214 access controls were set. Of that number:
- 196 records had a code applied to the entire record;
- 10 had individual documents locked down with a code; and,
- eight had both record and document codes applied.
Grahame Grieve, Principal at Health Intersections, argues My Health Record is stuck in a time warp—a system built on technology that was state of the art in 2007—but that has not kept pace with technological advances during its years of development.
“In the last decade, there’s been a lot of change, smart phones, etc., and we’re all used to the way the Web works: a set of federated systems that act together to serve us,” he wrote in a statement to the Australian Senate committee tasked with investigating issues with My Health Record. “But the My Health Record is still frozen as if all this hasn’t happened: inconvenient, inflexible, with poorly controlled information access rules … Australia is lagging behind other countries which are prototyping innovative digital approaches to solve healthcare problems.”
According to IEEE Spectrum, the “political firestorm” that greeted the program’s nationwide launch caused the Australian Digital Health Agency to extend the opt-out period an extra month, to November 15, 2018. Doing so buys the government more time to pass legislation aimed at fixing other issues related to the 2012 My Health Record legislation, ZDNet noted.
In July, ZDNet reported My Health Record legislation would be amended to strengthen privacy provisions to ensure no health record can be released to police or government agencies, for any purpose, without a court order, and that those who cancel their My Health Record will have their record permanently deleted from the system.
The Australian Healthcare and Hospital Association (AHHA) and other healthcare associations have praised the e-Health initiative and urged consumers to opt-in to the system.
“The advantages of having your medical history in the one place, both for consumers and healthcare providers, are numerous,” then-AHHA Acting Chief Executive Linc Thurecht claimed in an AHHA statement. “Apart from convenience, the potential benefits include better coordination of care among multiple healthcare providers, better informed decisions on healthcare that involve both the patient and the healthcare provider, reduced duplication of diagnostic tests, fewer adverse drug events, and reduced hospital admissions.”
Other Failed National Health Systems
Australia, however, is not alone in hitting e-Health speedbumps. The United Kingdom in 2016 pulled the plug on the National Health Services’ care.data initiative following a review into concerns over privacy, lack of informed consent, and the sharing of medical data with drug and insurance firms.
And in Singapore, the government recently halted plans to have all healthcare providers upload data to the new National Electronic Health Record System after hackers stole the personal info of 1.5 million SingHealth patients in the nation’s worst cyberattack.
Meanwhile, in the United States the debate over national healthcare and protected health information (PHI) security is ongoing, and lessons like these from around the globe illustrate that solutions are not yet on the horizon.
Finding answers to consumers’ legitimate privacy and security concerns will be increasingly important for medical laboratories that will be called on to deliver more value to healthcare networks, and be required to share patient data with other healthcare providers to do so.
—Andrea Downing Peck
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Australia Moves Closer to Nationwide Electronic Health Record as Nation’s Leading Pathology Laboratories Join Initiative
Doctors’ advocacy organization praises potential of ‘My Health Record’ but voices concerns about functionality, interoperability, and added burden placed on providers
Australia’s goal of implementing a nationwide electronic health record (EHR) system received a major boost when the country’s largest pathology laboratories signed agreements with the Australian Digital Health Agency (ADHA) to join the project. But the My Health Record system has yet to fully win over providers as the Australian Medical Association (AMA) raises concerns over functionality, interoperability, and the added burden placed on healthcare providers.
ADHA Chief Executive Tim Kelsey praised the addition of pathology and diagnostic organizations to the My Health Record platform. In Australia, pathology laboratory is the term to describe what are called clinical laboratories in the United States.
“The largest diagnostic organizations in Australia have now agreed to share their test reports with Australian consumers,” Kelsey said in an ADHA news release. “We are working to deliver a My Health Record for all Australians next year, unless they choose not to have one. Health consumers will benefit from this significant commitment by the pathology industry and their software partners.”
Australian Digital Health Agency CEO Tim Kelsey says his agency in 2018 will be creating a universal electronic health record for all the country’s 24.8 million citizens, though patients will have the option to opt out of the My Health Record project. He called the “significant commitment” of pathology labs to the project a major step forward. (Photo copyright: ADHA.)
In May 2017, Sonic Healthcare, Australia’s largest pathology provider, became the first private pathology company to join the My Health Record initiative. That news was followed by agreements between the ADHA and pathology companies Primary Health Care, Australian Clinical Labs, and seven other software vendors and pathology laboratories, including:
The ADHA also finalized service agreements with additional software companies that will enable diagnostic imaging providers to link up to My Health Record by the end of 2018.
AMA Says My Health Record Lacks Functionality and Critical Features
In 2012, Australia announced the roll out of the Personally Controlled Electronic Health Record, the original initiative to create a citizen-controlled secure online summary of health information, which later was renamed My Health Record. According to The Australian, more than 5.3 million Australians are now using My Health Record, a 500% increase in the number of shared health summaries uploaded in 2016-2017 and a 200% rise in interoperability with private hospitals.
Royal College of Pathologists of Australasia President Bruce Latham, MBBS, welcomed the announcement of the increased functionality for My Health Record.
“The Australian pathology sector has been working in support of the national eHealth agenda for a number of years,” Latham stated in the ADHA news release. “Work is now progressing to connect both public and private labs to the My Health Record, and patients nationally will start to see their pathology reports in their My Health Record.”
Developers and program administrators of My Health Record predict it will generate savings of AU$123 million from:
- Reduction in adverse drug events;
- Fewer duplicated diagnostics tests; and,
- Cost savings by 2020-2021.
However, the AMA, Australia’s doctors’ advocacy group, outlined its concerns about My Health Record in a Pre-Budget Submission to the Australian federal government. While praising the project’s potential to “not only save money, but save lives,” the AMA argued the national repository of healthcare information needs improved features and functionality to meet its potential.
“… more work is required,” the AMA wrote. “The return on investment will hinge in the short term on ease of use for medical practitioners who upload the clinical data. Interoperability with the multiple software packages used across the medical profession and broader health sector must be seamless.
“Problems uploading specialists’ letters, poor search functionality, time-consuming adaptations to existing medical practitioner work practices, or inappropriate workarounds will erode clinical utility and deter doctor use—and, more importantly, take time away from focusing on the patient,” the AMA concluded.
Automatic Enrollment Concerns AMA
My Health Record began as a self-register model, but as the program goes nationwide in 2018, it will do so using an “opt-out” model. This means citizens will be enrolled automatically unless they ask to be removed from the program. According to the ADHA, the automatic creation of My Health Record for all Australians will begin in mid-2018. The government’s goal is to provide access to My Health Record to all 24.6 million Australians by June 30, 2018.
The federal government’s switch to an opt-out system for My Health Record drew concerns from the AMA.
“Doctors do not have time to talk their patients through the My Health Record arrangements for opt-out, privacy, [or] setting access controls in standing consent for health providers to upload health information. This is the work of the government. Doctors must be allowed to focus on what they do best—caring for patients,” the AMA stressed.
Clinical Laboratories Have Stake in Outcome
According to Healthcare IT News Australia, the Australian government has spent AU$2 billion ($1.53 billion USD) so far developing what could become a white elephant if general practitioners and hospital groups don’t see a clinical benefit in its use.
If Australia is successful in creating a fully-functioning and widely-used national repository for health information, it will be among the first countries to do so. In 2002, the United Kingdom (UK) kicked off a nearly decade-long effort to create a national EHR system for the UK’s single-payer tax-supported health system. Ultimately, the government pulled the plug on the initiative after spending 12.7 billion pounds ($17 billion USD) trying to complete the project.
That result, and lessons learned from Australia’s experience, should inform American healthcare policy makers. It remains a daunting effort to implement a single electronic patient health records system. Of course, pathologists and clinical laboratory administrators have an interest in this issue, since medical laboratory test data represents the largest proportion of an individual patient’s permanent health record.
—Andrea Downing Peck
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