What is My Health Record?
My Health Record (MHR) is an online summary of your key health information compiled by you, your healthcare providers and Medicare.
This can include details of your medical conditions and treatments, medicine details, allergies, and test or scan results.
Healthcare providers like doctors, specialists and hospital staff may also be able to see your MHR when they need to, including in an accident or emergency.
Australians have until January 31* to opt out of the My Health Record. If you don’t opt out, a record will be automatically created for you.
*On November 14, the My Health Record opt-out period was extended until January 31, 2019.
**My Health Record: the case for opting in**
The MHR system promises to make Australia a leader in providing citizens with access to their own health records.
The scheme gives health care professionals access to information on your medications and allergies, immunisation records, summaries of hospital and GP care, investigation reports, and advance care plans.
This information could save lives in emergencies by providing health workers with information about drug allergies, medications, and medical history. Better continuity in the management of this information would help reduce the 27 per cent of clinical incidents in Australian hospitals currently caused by medication (mis)management.
1. The system had a rocky start
Launched in 2012 as the Personally Controlled Electronic Health Record (PCEHR), the system was plagued by technical failures and cost overruns. Take-up was low.
After five years, only 20 per cent of consumers had opted in. Even more seriously, there was limited interest from health professionals – particularly GPs and pharmacists who deal with patients most often.
Faced with the low patient take-up and limited training or information, health professionals saw little reason to waste time on an unwieldy system.
This mirrored international experience. Many countries suffered expensive disasters in building e-health systems from the top down. E-health appeared to serve the interests of administrators, not clinicians and patients.
Not surprisingly, patients showed little interest. British critics of a similar expensive failure warned:
- We need fewer grand plans and more learning communities.
The Australian experience has run the full gamut from failed top-down “grand plan” to a version that is more responsive to consumers and health professionals.
2. Linking up the fragmented health system
Large trials in the Nepean-Blue Mountains and North Queensland Primary Health Networks tested a more user-friendly system. In both trials, the opt-out rate was low: less than 2 per cent. The engagement of clinicians also increased.
In the Blue Mountains fewer than 15 per cent of GPs had registered with the PCEHR. By the end of the trial, with extensive education and training, this figure has risen to 70 per cent.
MHR offers new possibilities for linking up the fragmented health system, making it easier to navigate. Just as importantly, it can help you to become more informed and engaged with your own health care. And better health literacy is a necessary step in shifting the balance of the system towards patients.
The Consumers’ Health Forum – a supporter of MHR – has stated that patients are:
- …more likely to give permission to share their data if they understand how their data will be used and any benefits that will come from its use.
However, active participation in MHR will remain a challenge for many people, especially those who struggle with digital literacy.
3. Addressing security concerns
Any system that contains health information must be built on trust. Most of the criticisms of MHR rest on fears of inappropriate use or hacking of data.
However, critics have not pointed to any breach of the PCHR in its five years of operation. Rather, examples are often drawn from commercial operations which have succumbed to the temptation to commercialise data – an offence that could lead to prison under MHR.
Uncertainty is inherent in many facets of modern life, such as the use of credit card information for online purchases. Most surveys of popular attitudes towards the use of digital health information has shown a consistent, but nuanced concern.
Concerns identified in the two major trials were mainly focused on individuals’ lack of computer skills. But almost all consumers thought the benefits greatly outweighed any potential privacy risks.
The system will only succeed if concerns about protection of confidentiality are respected. A weak link is the digital skills and awareness of health practitioners, particularly GPs.
A large amount of health data is already out there in Medicare Benefits Schedule (MBS) and Pharmaceutical Benefits Scheme (PBS) data, the Australian Immunisation Register, and the Australian Organ Donor Register. These data are increasingly linked together, with great potential benefits. Data from Medicare, hospital records and other sources can be linked to improve our knowledge of causes of diseases and risk factors, and the best forms of intervention.
4. MHR is a step toward empowering patients
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.
Rather than protesting about a horse that has long since bolted, we need more scrutiny and improvement of current systems.
MHR 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.
If you choose not to opt out of MHR, a record will be created for you automatically. You can log into the system here to set controls on who has access to your data and set restrictions on the types of data that will be included. You can change your mind at any time and close access to your data.
- By Jim Gillespie, Deputy Director, Menzies Centre for Health Policy & Associate Professor in Health Policy, University of Sydney
**My Health Record: the case for opting out**
Unless you take action to remove yourself from the My Health Record (MHR) system, the federal government will make a digital copy of your medical record, store it centrally, and, as the default, provide numerous people with access to it.
If you don’t opt out during this period and later choose to cancel your record, you will no longer be able to access that record but the government will continue to store it until 30 years after your death. You will need to trust that it will not be breached.
There are three main problems with the MHR scheme.
1. It can’t be relied upon as a clinical record
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. As the Office of the Australian Information Commissioner (OAIC) points 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.
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. In an emergency, an unreliable record is a distraction, not a help.
Many doctors have in fact objected to the incompleteness and lack of utility of the MHR. A recent poll on the AMA’s doctors portal suggests 76 per cent of respondents think the MHR will not improve patient outcomes while 12 per cent think it will.
Notwithstanding this fundamental deficiency, the government is pushing ahead with an inherently risky scheme.
2. It creates a security risk
Health data is prized by hackers
Storing records digitally with online access greatly increases their accessibility for criminals, hackers and snoopers. Health records are valuable as a means of identity theft due to the wealth of personal information they contain. They are a huge prize for hackers, fetching a high price on the Dark Web.
You won’t know who has seen it
It won’t just be your doctor who has access to this centralised digital record of your personal health information. The default position is that numerous people will have access – doctors, pharmacists, physiotherapists, nurses, and unidentified staff of various organisations.
MHR’s access-logging system does not track which individuals are accessing records, only institutions, which means you won’t be able to tell who has seen it. Even without a technical hack, that will make it almost impossible to keep your information secure in this system.
De-identification is risky
The government is also planning to allow access to your health information for research purposes by “de-identifying” your information. That means the data should not be able to be linked to a particular individual.
But the national government has a bad record for successfully de-identifying health information.
In 2016, the government released a data set that included information on a large number of patients spanning 30 years. It was meant to be de-identified.
IT researchers at Melbourne University quickly demonstrated it could be re-identified and linked to the individuals concerned. Such re-identification risk will only grow, as data sets proliferate and tools get smarter.
Third-party access jeopardises security
MHR also permits external health apps to access your records. According to the legislation, this should only be done with your consent.
Unfortunately, and predictably, health apps are already securing “consent” through obscure, standard form contracts so you might not be aware the app owner could sell your sensitive medical information to others.
Last month, the ABC revealed one such health app (HealthEngine) was selling patient information to law firms, so patients with serious conditions and injuries were contacted repeatedly by strangers pushing them to pursue legal claims. Many didn’t know how their sensitive medical information was revealed.
The ADHA’s website has published a report on the woefully inadequate privacy policies of mental health apps, and yet these apps might be authorised to access your MHR data with your supposed consent.
3. An ‘opt-out’ scheme goes against best practice
Critically, the opt-out consent mechanism for MHR flies in the face of global best practice for informed consent – and our own federal privacy regulator’s guidelines on the sort of consent necessary for use of health information.
Consent for use of personal information should be express, fully informed, easy to understand, and should require action on the part of the individual.
MHR disregards all of those principles.
MHR does not seek your express consent. Instead, if you do not take the necessary steps before [January 31, 2019], your health records will automatically be copied, stored and shared.
You will also not be fully informed. There will be no national television, radio or print media campaign to advertise the MHR scheme, which many Australians have misunderstood in the past. The government will not even send you a letter to tell you about this scheme, let alone its very serious risks.
By contrast, the OAIC says organisations seeking individual consent to use personal information should generally:
- … ensure that an individual is properly and clearly informed about how their personal information will be handled, so they can decide whether to give consent.
- … seek express consent from an individual before handling the individual’s sensitive information, given the greater privacy impact this could have.
Even if implied consent were acceptable (and it is not), the OAIC states further that an organisation:
- … should not assume that an individual has consented to a collection, use or disclosure that appears to be advantageous to that person. Nor can an entity establish implied consent by asserting that if the individual knew about the benefits of the collection, use or disclosure, they would probably consent to it.
The time to opt-out is now
MHR is likely to create very limited benefits for many, if not most, Australians. It creates unacceptable security risks for our most sensitive personal information. And the government’s method of obtaining “consent” goes against international best practice.
If the MHR scheme were properly advertised, fully explained and Australians given a choice whether to opt-in, Australians could make an informed choice about whether the limited benefits justify the substantial risks to their sensitive information.
Those concerned about the security of their health information will need to take steps now to remove themselves from the MHR system.
- By Katharine Kemp (Lecturer, Faculty of Law, UNSW, and Co-Leader, 'Data as a Source of Market Power' Research Stream of The Allens Hub for Technology, Law and Innovation, UNSW), Bruce Baer Arnold ( Assistant Professor, School of Law, University of Canberra) and David Vaile (Teacher of cyberspace law, and leader of the Data Protection and Surveillance stream of the Allens Hub for Technology Law and Innovation, UNSW Faculty of Law, UNSW)