Right: Australia's My Health Record is not the only such scheme. The British version was set up with the same aims, but was later branded a failure.
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Arguments against remaining in My Health Record
1. My Health Record is not a reliable medical record likely to be widely used by clinicians
One of the major criticisms made regarding My Health Record is that it is not a reliable clinical record.
In an opinion piece published in The Conversation on July 16, 2018, Katharine Kemp, Bruce Arnold and David Vaile, academics who have studied the efficacy of My Health Record, stated, 'Contrary to what many Australians may believe, MHR is not a clinically-reliable medical record, and was not designed to be. It is not up-to-date and comprehensive.'
The Office of the Australian Information Commissioner has pointed out , 'The My Health Record system contains an online summary of a patient's key health information; not a complete record of their clinical history.'
Some critics have noted that the My Health Record is not a reliable guide for clinicians regarding a patient's previous medical history. Kemp, Arnold and Vaile note, 'If, for example, a doctor were treating a child in an emergency, the doctor could not rely on an MHR to know what medications the child has been prescribed up to that date.'
This incompleteness is a result of the manner in which the data is inputted. A lot of the record relies on the patient manually inputting events and treatments. There is a reliance on individuals who are not compelled to update patient records. On June 25, 2018, Medical Republic published a comment by Bernard Robertson-Dunn in which he stated, 'The responsibility for inputting much of the key health data is up to a patient and their GP. My Health Record will not fully populate itself or keep itself up to date. Patients will need to see their GP if there have been any significant changes to their health.'
It has been suggested that doctors do not believe they will be able to confidently act on the information supplied by My Health Record. An Australian Medical Association (AMA) survey published on July 13, 2018, found that 52 percent of the doctors surveyed strongly disagreed that My Health Record would improve patient outcomes while a further 24 percent disagreed. Thus 76 percent of those polled did not believe the record would assist significantly in patient care.
This lack of clinician confidence in My Health Care may explain its underutilisation. Figures released in September 2017 by the Australian Digital Health Agency, which is rolling out the national repository for health information, show that while 21 per cent of the population has a My Health Record, only 263 specialists were connected to the system, less than 150 hospital discharge summaries are viewed each month by any healthcare organisation, and about 200 GP-generated shared health summaries were accessed by staff working in public and private hospitals in August, 2017.
Alison Verhoeven, the chief executive officer of the Australian Healthcare and Hospitals Association, has stated, 'I think there are well-founded concerns about the substantial investment that has been made to date in the My Health Record for limited results and the capacity for this to be addressed in a timely and effective manner.'
2. My Health Record data is vulnerable to hacking
Critics of the My Health Record claim that any online record is susceptible to hacking no matter how sophisticated the security system. It is claimed that no data storage system can be made fully secure from skilled hackers determined to breach it. Civil liberties advocates are concerned that this susceptibility to hacking endangers people's privacy as it removes protection from their medical histories which can be accessed and misused by hackers.
On July 16, 2018, Nathan Jolly claimed in thebrag.com, in relation to the hacker security of My Health Record, 'Many others have written about the privacy concerns of this scheme..., and with good reason: no digital data which exists in "the cloud" or on any computer connected to a network can ever be truly deemed safe. The Government can assuage your fear with assurances of Fort Knox-type security measures, but Government-ran computer systems are notorious clunky.'
On November 15, 2018, Choice published an overview considering the advantages and disadvantages of the My Health Record which noted, 'Centrally stored information always brings the risk that in the event of a data breach there could be serious implications for you.'
As evidence of the capacity of central databases guaranteed by the Australian government to be compromised, Choice reported in July, 2017, that the Medicare details of Australian patients were being sold online by a trader on the dark web.
Critics also warn that though there will be regular security audits of My Health Record, any documents downloaded or created by a doctor could also be stored on their local IT system and the security of this will depend on their system.
Critics of the system have noted that similar health record storage systems have been hacked in other countries. In July, 2018, hackers accessed 1.5 million health records in the Singaporean government's online health system.
In 2016 a Californian hospital paid $US17,000 in bitcoin as ransom to a hacker who had seized control of its computer systems. A 2017 study of health data security in the United States found that on average, 4.6 million persons are annually affected by theft or loss of protected health information versus 19.4 million affected by hacking and unauthorised use of protected health information. Dr Nathan Pinskier of the Royal Australian College of General Practitioners and an e-health specialist has stated that breaches are as common and as likely in Australia as they are overseas. He stated, 'In Australian cyber security, there are only two types of healthcare organisations - those that know they've been hacked and those that don't know they've been hacked.'
3. My Health Record data could be used by employers or insurers to the disadvantage of record holders
Opponents of My Health Record are concerned that loopholes in the legislation or a later relaxation of access restrictions could allow employers and insurers to access the private health data of those with a My Health Record
Tom Ballantyne, from Maurice Blackburn Lawyers, has noted that doctors who examine employees would have access to their medical health records unless the worker changed his/her privacy settings. Mr Ballantyne has stated, 'On the face of what's in the My Health Record Act alone, I think it is very clear that a doctor performing an assessment for an employer or insurer could access My Health Record without there being any further consent process.'
Mr Ballantyne has stated that if the government wanted to ensure that access to My Health Record was not to be used for employment-related health checks and insurance purposes, 'the simplest thing would be to repeat this kind of exclusion clause in the My Health Record Act'. Until this is done, Mr Ballantyne has argued that employers and insurers would be able to use the doctors they employ to access individuals health records.
Unions have warned that there is uncertainty over the potential for employers to gain access to the private health data of workers from employer-appointed doctors. Doctors who examine claimants for insurance companies could also be able to access My Health Records. This has led unions to encourage their members to boycott the new My Health Record system.
Unions members to opt out of the system arguing that doctors working for employers, to make pre-employment health checks or for insurance purposes, could get access to and pass on a worker's entire medical history under the new system. The Rail Tram and Bus Union is advising its 35,000 members to opt out of the online health record because many are required to undergo pre-employment safety checks.
The Rail Tram and Bus Union National Secretary, Bob Nanva, has stated, ' There is simply no justification for employers to seek access to personal health information that does not directly relate to workplace safety.'
As an indication of the ease with which insurers might be able to access My Health Record data, The Saturday Paper reported in the week ending August 3, 2018, 'Local appointment booking app service HealthEngine got into hot water just last month when it was revealed to have shared patient information with personal injury lawyers. HealthEngine is one of several apps that have been granted access to the My Health Record platform.'
Privacy and civil liberties advocates are concerned that this personal medical information could be used to discriminate against people when considering them for employment, an insurance policy or an insurance claim. More particularly, workers claiming workers' compensation can also be required to undergo medical examinations. There is concern that their My Health Record data could also be used to impede workers' compensation claims.
4. My Health Record could create complications for separated parents, especially parents fleeing abusive ex-partners
Family law experts have warned that the My Health Record system could become a new source of contention between disputing ex-spouses, while risking the safety of women fleeing abusive former partners.
It has emerged that a loophole exists in the system, allowing a parent who does not have primary custody to create a My Health Record on their child's behalf, without the consent or knowledge of their former partner.
An abusive ex-partner can thereby gain access to details including the location of medical practitioners and pharmacies attended by the child with their primary caregiver, potentially narrowing down the locations of victims in hiding.
Angela Lynch, chief executive of the Women's Legal Service in Queensland, warned that any refusal of access to a child's My Health Record to a parent by the Digital Health Agency could be contested in the Family Court, including by an abusive former partner.
Ms Lynch has stated, 'Perpetrators are highly litigious and will use information against victims and family.'
Ms Lynch has warned that many abusers retained shared parental responsibility of their children, even if apprehended violence orders were in place, because the Family Court was a forum where parties were often forced to compromise.
Unless a primary caregiver has a Family Court order granting them sole parental responsibility in regard to medical treatment, which was rare, a refusal of access to the child's medical data would be unlikely to withstand a legal challenge.
Terese Edwards, chief executive of the National Council of Single Mothers and their Children, said she had 'serious concerns' about the privacy and safety of vulnerable women under the My Health Record system, 'especially if they have had an abusive or controlling person in their life and particularly if there's children involved'.
Linda Burney MP, the opposition's spokeswoman on domestic violence, has warned that the government must 'consult with community groups about concerns private information could be accessed by abusive partners in abusive relationships'.
Ms Burnley has stated, 'We strongly urge the government to consult and work closely with advocacy and support groups in the preventing family violence space, to ensure that My Health Record can be used safely by all.'
The Law Council of Australia's President, Morry Bailes, the Chair of the Privacy Law Committee, Business Law Section, Olga Ganopolsky, and the Chair of the Family Law Section, Wendy Kayler-Thomson and Director of Policy, Dr Natasha Molt appeared before the Senate inquiry into the My Health Records system to request amendments to the definition of parental responsibility under the My Health Record Act. They claimed that these amendments were needed to ensure a child's My Health Record could not be accessed by a parent subject to a domestic violence, restraining order, personal protection order to stop the My Health Record of children being used to track-down victims of family violence.
5. A similar system has failed in the United Kingdom
Opponents of the My Health Record claim that it is virtually identical to the British system care.data which ran between 2014 and 2016 before being cancelled due to the failure of its security provisions.
The man in charge of implementing My Health Record in Australia, Tim Kelsey, was also in charge of setting up care.data. Phil Booth, the coordinator of British privacy group Medconfidential, has claimed the similarities between the two systems were 'extraordinary' and he expected the same privacy breaches would reoccur.
Mr Booth stated, 'The parallels are incredible. It looks like it is repeating itself, almost like a rewind or a replay. The context has changed but what is plainly obvious to us from the other side of the planet, is that this system seems to be the 2018 replica of the 2014 care.data.'
The similar care.data system in the United Kingdom was cancelled in 2016 after an investigation found that drug and insurance companies were able to buy information on patients' mental health conditions, diseases and smoking habits.
Mr Booth has claimed, 'We had the same promise, exactly the same promise. Not used for solely commercial purposes. It's bullshit.
If you have a commercial company that also works for Australian healthcare services, they then avoid the purely linguistic safeguard of "solely commercial". That has been used by information intermediaries over here, and they then service pharmaceutical companies. It's just smoke and mirrors.'
In June, 2015, it was revealed that nearly one million people in Britain, who had opted out of the care.data database, were still having their confidential medical data shared with third parties because the Health and Social Care Information Centre had not processed their requests.
In June, 2016, the United Kingdom's Life Sciences Minister announced the scheme had been scrapped some two years after its roll-out and after a government expenditure of S7.5 million.
Professor Sheila Bird, of Strathclyde University's Department of Mathematics and Statistics, stated with regard to the failure of care.data, 'Data-sharing as proposed by care.data was disastrously incompetent - both ethically and technically. Professionals rebelled and prevailed in outcasting care.data, thereby ensuring that future proposals will not succeed unless both technically proficient and in the public interest.'
Critics of the My Health Record have suggested its potential to be afflicted by exactly the same ethical concerns and technical issues as care.data. The former head of the Turnbull Government's Digital Transformation Office, Paul Shetler, has claimed that the My Health Record system shares faults with the withdrawn British system.
Mr Shelter has stated, ' "The (Australian) rollout of this has been significantly flawed, it's got a lot of similarities to what happened in the United Kingdom...
(Digital Health Agency) have seen what has worked and what hasn't worked in other countries and they didn't learn from the history.'