You now have the choice of opting out of having your personal medical records stored on a national database as part of the My Health Record system – and kept there for as long as 130 years.
The government has now signalled that the opt-out period will be extended a month beyond the original October deadline, and individuals will be able to have their health information permanently deleted from the system.
That being said, there was a lot of public debate prior to the start of the opt-out period concerning the merits and risks of the digitisation of people’s medical information. Those in support argue it has the potential to reduce clerical issues like medication errors, while those with concerns highlight the potential privacy and security risks of storing Aussies’ personal data en masse in a national database.
So, with that in mind, here’s our explainer about the My Health Record system, along with its potential pros and cons.
What is the My Health Record system?
My Health Record is a government initiative that stores a digital copy of your personal medical information within an online national database, accessible to approved health professionals such as GPs and ER healthcare providers. You personally manage your My Health Record, which means you can choose who it’s shared with, add additional information and change its security settings.
My Health Record was first launched in 2012 by the Gillard government, however at the time it was known as the Personally Controlled Electronic Health Record (PCEHR). In 2016 the initiative was renamed My Health Record and launched by the Turnbull government – at the time the service had 2.6 million users, which represents approximately one ninth of Australia’s current population of 24.13 million.
The driving motivations behind the creation and implementation of My Health Record are, according to former Minister for Health Susan Ley, to “improve clinical outcomes and efficiency”, and to provide Australians with immediate access to their health information.
My Health Record can help you keep track of your important health information all in one place. This year, you will get a #MyHealthRecord unless you tell us you don’t want one. Learn more: https://t.co/iCrBiXyJfi pic.twitter.com/UGHafYJDiC
— My Health Record (@MyHealthRec) July 16, 2018
What does My Health Record do?
The My Health Record system will create a digital record containing your medical information, unless you choose to opt out. This record is then accessible by you, certain registered healthcare providers, and any other health providers/insurers that you authorise to access your record.
The idea is that both you and healthcare providers benefit from having immediate digital access to your personal health information, increasing the efficiency with which health professionals can view your medical information, and subsequently provide treatment. The types of information stored within your record could potentially include:
- previous medical diagnoses
- medicines you are taking
- pathology test results
- HIV status
- mental illness
- organ donation decisions
What are the potential benefits of My Health Record?
The main benefit supposedly provided by My Health Record is around instant access. For example, if someone was involved in a serious accident and was unable to speak or otherwise communicate, the My Health Record website notes health professionals would be able to instantly access certain medical information, and use that to determine what they consider to be the best course of action, in real time.
My Health Record also claims to offer an individual benefit, in that wherever you travel in Australia, whichever health provider you visit, you should no longer be required to recall your medical history. It also means that you should be able to personally access and view your own record at any time, whether you need to update it with new information or double-check a certain aspect of your record.
Supporters said My Health Record offers new possibilities by connecting an already fragmented health system. They argue data sharing with commercial enterprises is illegal and the five years of operation under the PCEHR did not see any security breach. Importantly, health data is already collected through Medicare Benefits Scheme (MBS), Pharmaceutical Benefits Scheme (PBS), the Australian Organ Donor Register and the Australian Immunisation Register, and arguably bringing this data together could improve our understanding of causes of diseases, risk factors and the best approach for treatment or intervention.
BLOG: Dr Caroline Yates believes that with #MyHealthRecord she can help improve #healthcare to people who traditionally have poorer outcomes. Read more: https://t.co/K1yxO41ThP pic.twitter.com/DIu7y0rgcL
— My Health Record (@MyHealthRec) July 9, 2018
What are the potential risks of My Health Record?
One of the main reasons for concern being voiced is around security against potential or attempted data breaches. Critics claim the system’s current security and privacy measures are not enough, and independent security consultant Troy Hunt told the Sydney Morning Herald breaches of the system were “an inevitability”. The weeks prior to the start of the opt-out period saw a number of articles and think-pieces appear online detailing the privacy concerns of various groups and individuals. One article argued Australians would not be able to see who had viewed their data, as the record was open to numerous people including doctors, pharmacists, physiotherapists, nurses and more.
The Australian Digital Health Agency’s My Health Record website states “there are people, processes, technologies and legislation keeping the information held in My Health Record safe”, including firewalls, audit logs, and system monitoring.
Another concern has been the access to people’s private data by government agencies and the police. The government and Australian Digital Health Agency had previously maintained that access would only be granted to such agencies if necessary and lawful – and it was announced on August 1 that police and government agencies will not be permitted to access someone’s My Health Record information against their will without a court order.
Access to an individual’s My Health Record information by police and government agencies had been a significant point of concern for many, and following a meeting with the head of the Australian Medical Association, Health Minister Greg Hunt confirmed that the My Health Record legislation will be changed to prevent this.
“The amendment will ensure no record can be released to police or government agencies, for any purpose, without a court order,” he said in a statement.
“The Digital Health Agency’s policy is clear and categorical – no documents have been released in more than six years and no documents will be released without a court order. This will be enshrined in legislation.”
The My Health Record does permit external health apps to access your records with consent, however there have been reports at least one of these apps then sold information to law firms where marketing material was allegedly pushed to patients who were urged to pursue legal claims.
Critics also point out the My Health Record is not actually used as a ‘clinically reliable medical record‘, with emergency doctors unlikely to use it when treating a child, stating the system is an unreliable record is a distraction, not a help.
Former head of the Government's Digital Transformation Office @paul_shetler told @hamishNews the My Health Record database doesn't actually address any defined needs and could be a 'tech wreck' in the making #MyHealthRecord https://t.co/9z4f5iJxvA pic.twitter.com/2lyNqHuYb4
— ABC News (@abcnews) July 18, 2018
Should I opt out of My Health Record or not?
At the end of the day, whether you choose to opt out of the My Health Record system is entirely up to you. You will need to consider the potential benefits offered by having a digital medical record, and weigh them against the perceived potential risks of your personal medical data being stored online in a government database.
While there’s a lot of talk at the moment about why you should opt out, and numbers are floating around which support the idea that people are opting out in droves –
PM Malcolm Turnbull says about 20,000 people chose to opt out of the My Health Record service yesterday, on the first day of the opt out period.
— Denham Sadler (@denhamsadler) July 16, 2018
– you should decide whether you want to opt out or not based on your own personal circumstances and feelings on the matter. You may have complex medical requirements which may be better dealt with if you had a digital health record, or you may prefer keeping your own records and wish to keep your personal information as private as possible.
It should also be noted – if you do not opt out, a record will automatically be created, however you can visit the My Health Record website to determine who can access your data as well as what data you wish to be stored. You can also close access to your data at any time.