Why having your health in your hands is most important when it's not

Reflecting on the value of EMR’s

Over a year ago I wrote an opinion piece in the Sydney Morning Herald about the Australian Government’s MyHealth Record initiative. I shared my own lived-experience of being hospitalised through emergency to make a case for the value of initiatives like this. However since then, there has persisted a great deal of public skepticism about the privacy and security of all digital health initiatives. Given how critical a role digital health has played in our capacity to combat and manage COVID-19, I think this is a good time to reflect on the value of, and dispel some of the misconceptions the public still has around MyHealth and digital health technologies more broadly.

The announcement of the Australian Government’s MyHealth Record initiative, and the opt-out period drew much public concern and vocal, albeit it often poorly informed, opposition. The Australian public, and the media that inform us have looked to the Australian Digital Health Agency (ADHA), and peak medical and clinical bodies for answers.

We seem, at least initially, to have met their carefully considered answers with a sense of distrust, and in some cases even anger. But in a modern Australia where we are seeing a number of our rights and freedoms eroded by government institutions, one could argue that we’d be cyclical and absent of trust even when the answers we receive are considered, genuine, and for the most part represent an astounding positive consensus among our peak medical, clinical, and consumer bodies. So why is there so much apparent distrust when we have such an unprecedented level of consensus about the value of electronic medical records (EMR) ?

I’m throwing my hat in the ring – as a patient in our health system for more than 20 years suffering from multiple serious physical chronic and mental health issues - in an attempt to dispel some of the very reasonable concerns, lay to rest some of the more unreasonable assertions that have been made, and to hopefully instill within others at least some of the immense excitement I feel when discussing the future of health care in this country. My aim is to offer the unique perspective as being not only a patient first hand, but as a Patient and Consumer Advocate who has been directly involved in providing consumer insight into the MyHealth Record, and chronic, mental, and digital health initiatives nationally and internationally.

The first, and biggest, concern has been the security and privacy of the MyHealth Record. There is a lot that has been, and will be said about the technical security of the record and any EMR - and to the extent that it is possible, the MyHealth Record is as secure as they come. There is inherent in any technology or system that communicates between devices, a risk of that security being breached, which is a risk it’s been made abundantly clear is a primary consideration by the ADHA. Now I know what you might be thinking: how am I so naive to believe wholeheartedly the tale that’s been spun by our government? Having been directly involved in reviewing, and providing consumer insight specifically on the functional security and consumer based controls within the record - I can say that, to the extent there is inherent risk, that risk has been mitigated to the highest standard that is possible. The inherent risk is always there, it’s an inescapable reality of the digital age. But to suggest that EMR’s simply aren’t worth the fuss on that alone would in turn support the argument that any device, record, or digital repository which has risk is not worth our time - which is nearly everything that modern society relies on.

In the same vein, similar concerns have been raised about the ability to access the record improperly at the point of the device - say your doctor steps out of the room with your record logged in on their computer. But the same can be said of paper records, which additionally cannot be password protected or encrypted - let alone the immense danger and inconvenience of how irreplaceable a physical medical record is should something happen to it. Again, I imagine you’d think me a bit silly to suggest based on that thinking that we should never have allowed, or relied on paper records because of some very similar concerns about it’s digital counterpart. The ability to reliably and efficiently audit the log of who has accessed your record, and what they’ve viewed or added, alone provides a measure of accountability unheard of in paper records.

Which leads us to the ethical concerns over privacy and use. These are concerns which deserve the attention they are receiving in the public eye. The poor attitude to the use of consumers’ data reaches further afield than government, and the fact that for the most part we seem to learn our information has been sold, lost, or otherwise shared through a news headline is unconscionable, and an indictment of some of the commodified attitudes towards the data that makes up you and I. It is crucial at this point to remind people that the personal health data that will exist in your MyHealth Record will currently under no circumstances be made available for sole commercial gain, or be provided to insurers. This, like any good safeguards, are enshrined in law and carry significant penalties should they be breached. Given the vocal, and adamant perspectives put forward to the ADHA from Health Consumer Advocates like me, consumer representative bodies like Consumers Health Forum of Australia, and leading peak medical and research bodies like the Australian Medical Association and Research Australia - in favour of that safeguard against misuse, it is unlikely we will ever see the same degree of eroding value creep into this particular initiative.

The last thing I’d like to talk about speaks more to the ‘why’ than the ‘why not’ conversation that has dominated us thus far. That is that this is fundamentally not about government nosiness, the corruptibility of our institutions, or even the polled-to-death trust indicators we assign to the area of health care. This is about a number of very tangible, impactful, and significant steps towards a national standard of healthcare that will see fewer people fall victim to medications misadventure, or stress to the point of panic when upon presenting to emergency they can’t remember what medication they’re taking, how much, and what they’re allergic to.

To use what I wrote over a year ago in that SMH article - I was hospitalised through emergency 9 times in 2012 for bowel obstructions that each time could well have killed me. Each time I presented, through gritted teeth, my hands pressed to my abdomen in an attempt to manage the discomfort, I recounted my 20 years of medical history in all it’s terrifying glory. I tried desperately though the fog of pain to remember the 8 separate medications I was taking - and would then, as my vision blurred, try to tell the nurse I was allergic to sulphur based medications. I was lucky that I never presented unconscious, or without a family member to help keep me calm. If I had, I likely would have been prescribed a medication that would trigger an allergic response of bleeding internally, or the very carefully managed doses of my medication might be prescribed incorrectly causing a dramatic change in my condition. I fought 9 times that year to stay conscious through the pain. Not out of a sense of demonstrating my own resilience, but because I knew that my history was in my shaking hands.

That is perhaps the biggest immediate benefit of the MyHealth Record and electronic medical records universally - that ironically having your health in your hands is most effective when, in those acute situations, you can feel safe knowing that in that moment the difference between life and death doesn’t have to be.

The immediate benefits of this initiative to those who are chronically unwell, ageing, or confide in the treatment of multiple care providers are uncompromisingly positive - and represent a dramatic and exciting shift in the way we coordinate care to support and enable health and well being management. But even to those of us that see little use for the MyHealth Record or EMR’s in day to day life, and are for the most part healthy and well remember that, if nothing else, this may well be the safety net you rely on one day in the future when you likely find your health waning.