This month I am getting right out of my comfort zone of commercial law, property and the like to an area that I never get involved with in the course of my day to day practice – but it is one of vital importance to every Australian. (And for my readers outside Australia, these same issues will arise for you soon enough, if they have not already done so).

This year every Australian, including children, will get a My Health Record. You’ve very likely seen or read conversations around it: the how, the why, the why not and more. It raises some serious issues for all of us – potentially a revolutionary improvement to our health system on the one hand; but also potentially, some major privacy and data sharing concerns on the other.

Perhaps you’ve already decided whether you want in or out. But for many of us, including myself, it has been something we’ll think about ‘another day’. But with the window to opt out closing in a mere few weeks (15 November 2018 to be exact!), now is the time to consider the pros and cons and make your final decision.

First of all: what is My Health Record?

My Health Record is a government initiative that stores a digital copy of your personal medical information within an online national database. So as well as having files with every doctor you’ve seen, test results at a pathology lab, prescription records at various pharmacies and so on, all this information will be in one central online location.

My Health Record has existed since 2012 as an opt-in system, with low uptake by the public. From 15 November the reverse applies – your records will be uploaded into the system unless you opt out.1

This electronic record provides immediate digital access to your personal health information, increasing the efficiency with which health professionals can view your medical information, and subsequently provide treatment. It is accessible by you, by certain registered healthcare providers, and by any other health providers/insurers you authorise to access your record.

The information stored within your record could potentially include allergies, previous medical diagnoses, medicines you are taking, pathology test results, HIV status, abortions, mental illness, organ donation decisions and more.

 

My Health Record (MHR): The Pros

A near universal health care system

The more of us who use MHR, the more effective it will be. MHR is a big first step towards creating a nationally effective eHealth system that will reach all people (except for those who opt out) throughout Australia. If you are in MHR, no matter where you go across the country, your records will be accessible in a matter of moments by medical professionals, hospitals and the like.

An improved health system moving forward

The ability to collate and access this level of health information via one central point will equip the medical profession, Government and industry groups to gain a much better understanding of what works and what doesn’t across the board, from treatment results to health provider performance. This information will be used to improve and innovate the entire industry, creating a better health system for Australia.

Proactive patients

The Consumers’ Health Forum of Australia (CHF) believes that the MHR will provide every one of us with a previously unavailable access to our own health records. This, in turn, will result in a mindset shift from our being ‘passive patients’ to being ‘active partners in their own care’ as each record holder will need to exercise choice and control over who can access their MHR.

A digital health future

The ability of MHR to be the transformative force in creating a more innovative and dynamic health industry has been compared to that of the impact that electronic banking revolution had on Australians and the way we bank.

Centralised record keeping

Having your own (and your loved ones) health information such as allergies, medicines, and end-of-life wishes accessible from a central database makes it much easier to ensure it is available wherever and whenever you need it.

Digital health an industry in infancy

Whilst MHR already has some very valuable features it is not a complete solution in itself. This presents an opportunity for it to be shaped and improved over time by us – the general public – the very stakeholders that it benefits most.

 

My Health Record (MHR): The Cons

Changing political agendas

The laws and legislation surrounding MHR can change to suit the political agenda at that time. So for example, whilst the MHR system currently lets you opt out, there is no guarantee the same will apply in the future or that it won’t be made exponentially more difficult to do so.

Third party access to private health information

In 2016, despite a strong opposition in parliament, the Department of Health handed both the National Bowel Cancer Screening and the National Cervical Screening registers over to Telstra, thus giving a for-profit organisation access to the most intimate health information without people’s consent. 2

If it’s happened once it can happen again. There is a real possibility that at some stage in the future our individual private health information could be transferred, sold or shared to third parties such as private corporations, insurance companies, pharmaceutical giants, marketing researchers or anyone else who is willing to buy it.

You can take it for granted that every application for life or health-related insurance will include an irrevocable consent for the insurer to access your MHR for the life of the policy.

Other Government agencies

Police and security agencies will be able to access MHR if they first obtain a court order. Perhaps that makes us all safer. But before MHR existed, this information simply would not have been available in one place, with or without a court order. Is it right that MHR can ever be used for any non-health related purpose?  

The ability to manage MHR may be revoked

There is already a strong medical lobby that wants patient control over MHR revoked. This may be the same lobby that has succeeded in keeping numerous self-tests for various diseases (which are easily available around the world) blocked, or locked behind doctor’s referral or prescription. 3

Unlimited & uncontrolled access

The individual can set a PIN and some security settings, but the reality is that by the default of its design MHR will enable access to an unlimited range of users – from various health and private sector administrators or pharmacists through to any hospital employee accessing a terminal. The result may be anonymous, untrackable and unaccountable access to your health information.

What’s out there…stays there

As data storage gets larger, faster and cheaper, nothing gets deleted. Whilst some records may be marked deleted, nothing really disappears. This means that at some point in the future, someone might be able to access your records for their own purposes. This may mean your child’s future employer may be judging them for a past case of depression, or you may be getting rejected for insurance based on a previous health issue. The options are endless and concerning.

Hesitation to seek medical support

Many people already have valid concerns about privacy in the digital age. Others already avoid doctors in delicate situations. With the MHR system, health issues are not just discussions between you and your GP – they form part of an online conversation that can be available within seconds to anyone with access to the system.

This of itself carries the risk that not only that some people will avoid seeing their doctors, but also that those people will disclose less when they do see them. This can be especially true in various cases, from delicate issues such as infections and sexual health, through to any marginalised, stigmatised, or discriminated against group – Indigenous people, mental health consumers, sex workers, drug users, or people living with HIV.

The safety, security & privacy of your online medical record cannot be guaranteed

When multiple users, most of whom (including medical practitioners) have only basic computer skills, are combined with a massive body of highly personal data, the possibility of an attack or breach cannot be underestimated.

As an example, health records in Singapore were the subject of a cyber attack revealed in June this year. According to the Singaporean Government, hackers stole the personal data of 1.5 million people (approximately a quarter of the population) in a deliberate, targeted and well-planned attack.

Closer to home, the ABS’s 2016 Census showed the precarious nature of technology when the Census website crashed due to inadequate protections against even a minor attack. A crash that resulted in serious privacy implications – even though the Government had tendered that project as a ‘high risk’ to ensure everything was secure.

 

So what next?

The arguments for and against MHR are myriad and complex. However, each of us has to decide whether to be “in” or “out”, based on our own personal circumstances and feelings – and to make that decision soon, otherwise it is made for us.

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 as private as possible. Only you can decide.

I cannot advise you either way – I am still making up my own mind!

  • If you do want to opt out, you can go to this website: https://www.myhealthrecord.gov.au/for-you-your-family/opt-out-my-health-record
  • If you want a My Health Record, you don’t need to do anything. A secure My Health Record will be created for you by the end of 2018 if you have a Medicare or Department of Veterans’ Affairs card.
  • And finally, if you’re unsure, you can always opt out now, and then re-join at a later stage.

Whatever you decide, I hope you have found this article helpful in clarifying your thinking. And please do share your thoughts on it; I would love to hear some different perspectives – they may help me make my own decision.

If you would like to know more or need any assistance, feel free to contact us at Antcliffe Scott, we’d be more than happy to help!

Antcliffe:Scott Lawyers