Right: A taste of things to come? As if reinforcing the opinions of those who consider electronic storage to be unsafe and unreliable, the MyHealthRecord website broke down when citizens attempted to take the opt-out option.
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Arguments in favour of remaining in My Health Record
1. My Health Record should promote better patient care
The central premise of the My Health Record is that each Australia will have an electronic record of their medical history which can be easily accessed by practitioners in order to enhance the quality of care given.
Among the specific benefits claims are that there will be reduced medication errors. When the healthcare provider uses digital health to create or dispense a prescription and uploads the patient's health summary information, other health professionals will be able to make better decisions. For example, if a patient has seen more than two clinicians who have prescribed medications, these clinicians should be able to check current medications and so avoid prescribing contraindicated substances. As a backup, pharmacists will also be able to see the range of medications that have been prescribed, and be able to detect potential issues with a prescription.
An additional advantage claimed for My Health Record is that emergency treatment and treatment for people on holiday will be facilitated. Many patients require treatment from an Emergency Department or at a clinician while on holiday and do not remember their medical history and medications. If their home GP follows the RACGP guidelines, critical information about the patient's medical alerts, allergies, history and medications will be available.
The importance of an advance like My Health Record when giving emergency treatment has been stress by the current head of the Australian Medical Association, Dr Tony Bartone, who has stated, 'This is a new attempt, or a new system, to try and bring together a lot of information that currently exists in many different parts of the health system into an online, one-repository forum to assist doctors, especially doctors who don't have a relationship with the patient in front of them in an emergency situation or in an unforeseen circumstance, to do the best they can, and with all of the available information that's around in the system about that patient.'
In addition it has been noted that the process of undergoing pathology testing and gaining access to pathology reports will be streamlined and unnecessary duplication will be avoided. Clinicians are frequently unaware of what test have been ordered by another clinician. For example, a GP referral may miss key pathology, and so a specialist may order the same tests again. The My Health Record will provide quick and simple access to these results. For a patient - the pathology results will be available online after seven days (or sooner if the GP reviews the results and authorises personal access).
This point has also been stressed by the president of the Australian Medical Association, Dr Tony Bartone, who has stated, 'As well as their GP, patients might be treated in hospital, see specialists and allied health professionals, be referred by different doctors to different pathology labs and diagnostic imaging providers. These realities mean that each doctor who treats the patient doesn't currently have a clear overview of the range of treatments the patient has received.'
It has also been noted that a longitudinal health history may facilitate treatment overtime. There are cases where an event early in life may become relevant in later life - such as taking a drug that might have an unforeseen impact on a patient's health in later years. When new discoveries are made, the patient or their health professional will be able to check back through the history to see if there was an unintended medical risk.
It has also been noted that My Health Record should make it easier to support dependents with complex or changing medical needs. People who care for family members with complex health issues can have oversight of what decisions, tests or results are uploaded. For example, an aging parent may undergo a test but not know or understand what it's for. With access to health records, the family member may be able to alleviate confusion or seek further advice from the clinician.
It has further been noted that My Health Record will make access to children's immunisation records far easier. Child immunisation records are required for childcare and school. Being able to keep up-to-date and provide evidence quickly and easily is essential for parents and carers.
2. My Health Record data could be used for valuable research
Some proponents of My Health Record argue that access to the data will enable medical researchers to improve the health care provided to all Australians by, for example, detecting disease clusters and observing the mass efficacy of particular treatments.
The potential value of My Health Record data for medical research is explained on the My Health Record information site. The site states, 'By the end of 2018, most Australians will have a My Health Record, and most GPs, pharmacies, hospitals, diagnostic imaging services and pathology labs will be connected to the system. This means there will be an increasing amount of information available to guide health service planning, policy development and research to further improve Australia's health system.
My Health Record data may be used to provide insight into the effectiveness of the services and treatments being provided to improve health outcomes for patients. This data will help health researchers and public health experts ensure patients receive evidence-based care and that future health investment is directed at those who need it most.'
In an overview of My Health Record published by Croakey on May 11, 2018, it was suggested, 'The availability of population-wide and de-identified health data enabled by My Health Record offers huge potential, if privacy and security requirements can be met, in ascertaining what works and what doesn't work in the health system, ranging from medication results to health provider performance.'
On August 18, 2018, The Sydney Morning Herald published a comment by Crispin Hull, who was appointed to the Australian Bureau of Statistics governance advisory panel for measuring Australia's progress in 2011. Hull argues that the My Health Record data should be made available for research purposes. He has stated, 'This data is part of the common wealth and should be available, with identifying material deleted, to all who want to work with it... MyHealth and the computing power behind it should be seen as a great opportunity to build a great medical-research database. It would be impossible to predict the full benefits.'
Hull argues that 'stripped of individual identification the raw data of every interaction between people and the health system would reveal correlations, possible causations, trends, and lines of further inquiry that could lead to better treatments and avoidance of bad ones...
With modern computing power the data could reveal astonishingly useful stuff - things like cancer clusters, the effectiveness of drugs, and geographic prevalence of disease. Even drug incompatibilities or bad side effects could be detected well before case-by-case events bleep on the radar...
In December, 2016, the McKell Institute, an independent, not-for-profit, public policy institute, produced a review arguing for greater use within Australia of what it termed 'big data'. The review states, 'Working together, we will be able to use big data to advance medical and pharmaceutical innovation; we will be able to reduce wastage and improve efficiencies in healthcare delivery; and we will be able to prioritise preventative health interventions which will lead to healthier, longer lives for all Australians.'
3. There are provisions in place to protect patient privacy
The My Health Record system is managed in line with the Australian Government Protective Security Policy Framework. My Health Record data is stored in Australia, and is protected by high grade security protocols to detect and mitigate against external threats. The system is tested frequently to ensure these mechanisms are robust and working as designed.
Many safeguards are in place to protect the information held in the My Health Record system, such as strong encryption, firewalls, secure login processes and audit logging.
The My Health Record system is monitored by the Cyber Security Centre within the Australian Digital Health Agency. All personnel involved with the administration of the system undergo security checks. Australian Digital Health Agency
A range of security processes limit access to the My Health Record system. External software goes through a conformance process before it is allowed to connect to the system. This includes healthcare provider software and mobile applications.
Australian Digital Health Agency uses a range of technology to protect the sensitive personal and health information held in the My Health Record system, including: firewalls to block unauthorised access; audit logs to track access to records; initial and regular anti-virus scanning of documents uploaded to records, and system monitoring to detect suspicious activity.
The privacy of information in the My Health Record system is protected by legislation which includes: My Health Records Act 2012; Privacy Act 1988; Healthcare Identifiers Act 2010 and My Health Records Rule 2016.
The unauthorised collection, use or disclosure of information in the My Health Record system, of healthcare identifiers or of other information collected in relation to either the My Health Record system or Healthcare Identifiers Service is subject to civil and criminal penalties.
The Australian Government strongly encourages individuals, business and organisations to take steps to ensure they provide safe and secure digital health services. The Stay Smart Online website offers a lot of useful advice and tips about online security.
Healthcare consumers link their My Health Record to their myGov account. Accessing their record requires a password, and either an answer to a secret question or an access code. There are additional access controls that the consumer may set to limit access to the entire record, or specific documents within their record.
4. The government has regularly amended the My Health Record legislation to address stakeholder concerns
The Australian Parliament has made a number of amendments to the original legislation governing the operation of the My Health Card in order to address stakeholder concerns. These amendments are outlined below as presented on the My Health Record site..
'The Australian Digital Health Agency will not approve the release of an individual's personal or health information to a third party except where it is related to the provision of healthcare or is otherwise authorised or required by law. The new measures ensure that insurers and employers are prohibited from using information within your My Health Record, or asking you to disclose your information, for insurance or employment purposes. The primary purpose of My Health Record is to improve your care, and the use of your information for insurance and employment purposes is not healthcare.'
'Under the Agency's official operating policy, no information within My Health Record can be released without an order from a judicial officer. To date, the Agency has never received such a request and has never released information. Under these measures, the Agency's policy will be protected in law and will give Australians the assurance that no information can ever be released without oversight from a judicial officer.'
The purpose of this provision is to regulate the terms under which police or government agencies can access My Health Record data.'You will be able to permanently delete a My Health Record at any time, if you decide you would no longer like one. No archived copy or back up will be kept and deleted information won't be able to be recovered. A My Health Record that was cancelled in the past (and archived) will also be permanently deleted. If you cancel a record at any time it will be permanently deleted.'
Greater privacy is now provided for teenagers aged 14ð and over. Under these new measures, once a teenager turns 14, parents will automatically be removed as authorised representatives.
Harsher fines and penalties will apply for inappropriate or unauthorised use of information in a My Health Record. Civil fines will increase to a maximum of $315,000, with criminal penalties including up to 5 years' jail time.
There are currently safeguards in place to protect victims of domestic and family violence. Under the changes, the Agency will no longer be obliged to notify people of certain decisions if doing so would put another person at risk. In addition, parents subject to a court order, where they do not have unsupervised access to their child, or who pose a risk to the life, health and safety of the child or another person will no longer be eligible to be an Authorised Representative.
5. My Health Record will be empowering for patients
Some supporters of My Health Record argue that the system will be empowering for patients, giving them greater access to and control over their medical records.
On July 16, 2018, The Conversation published a comment by Jim Gillespie, Deputy Director, Menzies Centre for Health Policy & Associate Professor in Health Policy, University of Sydney. Professor Gillespie stated, ' Our health system suffers from a deficit of transparency. Patients are locked out of knowledge of how the system works - from the confusion around private health insurance plans to undisclosed out-of-pocket costs for medical procedures...
My Health Record is a small step towards empowering patients with greater knowledge about their health. Pressures to present records in terms that are comprehensible to consumers may even take us towards interactive "learning communities" - the basis of a more people-centred health system. Better-informed patients can enable more effective communication and mutual learning from health professionals.'
Queensland University of Technology Health Information Management senior lecturer, Sue Walker, has similarly stated, 'E-health initiatives like this have the potential to improve health outcomes for all people by promoting consumer empowerment in their personal health management and helping to deliver effective healthcare.
Having all your medical information in one place, including summary health information from hospitals, specialists and general practitioners, as well as pathology and diagnostic imaging reports, and prescriptions and vaccinations could be empowering for people.'
Ms Walker has further stated, 'People will have control over their records. They will be able to set who can access them and control who has access to see different parts of their record. They will also be able to see who has accessed their records.'
Relatedly, it has been claimed, that the system is designed not only o give patients the power to access their own records easily, but also to control and be informed of who else has accessed their data.
The Australian Digital Health Agency has stated, 'The My Health Record has been designed to give consumers more control of their healthcare information than ever before in Australia. As a consumer, you can go online and see a summary of who has accessed your information and set up automatic notifications to be sent via email or SMS each time a new healthcare provider accesses your record. This is what a user-centric security model is all about, empowering those who own the information to play a part in protecting what belongs to them. The Cyber Security Centre recommends setting an access code that is given only to healthcare providers you want to access your record and setting up automatic notifications via SMS or email to let the consumer know when their record has been accessed.'