Healthcare provider Neela Janakiramanan has concerns about the My Health Record that go way beyond privacy. She shares this comprehensive analysis of what’s at stake – and why youth and women in particular are at risk.
I’m going to start by breaking an iron-clad rule of debating tournaments by talking about Nazi Germany.
On March 27, 1943, a small group of the Dutch resistance coordinated an attack on an occupied building in Amsterdam. Disguised as policemen, they entered the building, drugged the guards, doused the contents of the building in a flammable liquid and set it all on fire. At a nearby fire station, other members of the resistance delayed the departure of the fire trucks as long as possible, allowing the contents of the building to burn, and then used excess water to extinguish the fire in order to cause as much water damage as possible.
This building was the Gemeente, the municipal register of Amsterdam, which contained in meticulously recorded detail, information about all the inhabitants of the city. For the Nazis entering The Netherlands, this treasure trove of information made it incredibly easy to find the members of those groups they had identified as being subject to their persecution. Unfortunately, this resistance attack was only a partial success, with 85% of the records still usable after – and were ultimately used with great and tragic effect.
This anecdote is, superficially, a series of logical fallacies and debating pitfalls, that came up during Hans de Zwart’s Godwin Lecture in 2015. I am appealing to the extreme, bringing up Nazis, making a hasty generalisation about centralised records, and creating a false dichotomy. So I will ask you to bear with me. Mostly, I have told this anecdote to get it out of the way, so that we can talk about the more imminent concerns of the My Health Record.
You’re in unless you opt out
Firstly, to explain some key points. The records will be created unless an individual Australian opts out. The record will be freely accessible to patients via their MyGov accounts. Uploads to the record are not automatic, and health practitioners do have to ask each time if an event summary can be uploaded to it. What is uploaded can be edited, modified or deleted by the patient themselves, at any time. Some data, such as prescribing data, may be uploaded automatically. The data can be pin code protected so that any doctor who wishes to assess it needs a code from the patient. In the case of emergency, the record can be unlocked without the code. In all cases, the ID of the person who accesses it will be stored in an identifiable way. The data will be made available to other government agencies and, at present, there is no specific legislation controlling who can access it and under what conditions, which includes no requirement by any agency to obtain a warrant in order to access the stored information.
After several weeks of ardent support, the Australian Medical Association continues to broadly support the My Health Record, with the only caveat being some protective legislation around broader access outside the medical community.
So why might a patient or the medical community broadly be in favour of an online health record? The big argument that is being made, and which Dr Tony Bartone, the president of the AMA made repeatedly two weeks ago, is “what if you get hit by a bus and you are unconscious.”
Honestly, this is as much an appeal to the extreme as the imminent arrival of Nazis.
Patients already arrive in hospitals in a compromised state, with no documented health history. The specialist who work in Emergency settings already have many ways and means to take care of people who can’t provide a medical history, including those with allergies and concurrent health conditions. Everyone has their blood sugar monitored while in a coma, regardless of whether or not they are diabetic. Many antibiotics are available which are less likely to cause allergy than others, and are used preferentially when allergy information is not known. Patients with uncommon and critical medical issues, such as haemophilia, already wear medical alert bracelets, and are unlikely to trust their lives to a computerised system, so a My Health Record will not necessarily relieve them of that requirement.
Years of training in diagnostic skill comes into play when assessing someone who is unconscious or critically unwell, and so the argument that a My Health Record is absolutely essential really undervalues the skills of our paramedics, emergency physicians, trauma surgeons and anaesthetists, who daily just keep people alive.
In non-critical situations, our fabulous GPs and other specialists already work around patchy medical history to provide exceptional care.
Electronic health records already exist, indeed many medical practices and hospitals already use them. There is a real paucity of data on whether or not national centralised systems save lives – because it is impossible to compare countries with varied health systems to each other, or individual countries with changing populations, economies and governments to themselves at different time point.
The assertion that a centralised record will save lives is an a priori belief and an assertion, not fact.
But, if we consider outcomes at, say, single institutions, both before and after the implementation of electronic health records, the benefit is marginal (around 0.2% effect on mortality in major studies), and usually follows an initial period of worsened outcomes as the system adapts to new technology. It is also commonly found that all medical records, whether electronic or not, can suffer from a poor signal to noise ratio and be bloated with too much irrelevant information, while also missing critical information.
It is important to remember that the Australian proposal does allow the patient to modify their own record, and that the patient may not be the most qualified to determine what is of vital importance to their own health and what is not. So in this setting, even if someone is admitted to an emergency facility unconscious and with no family contactable, can a treating physician truly trust the My Health Record that may be retrieved, or are they more likely to revert to their extensive diagnostic skills? As a patient, which would we prefer? It is easy to assume that a plethora of information is available, and forget that patients, even unconscious ones, present a wealth of information to skilled doctors.
Of course, many of the arguments made in favour of a record are that it is convenient. For people with chronic disease and terminal illnesses, it may make it easier for them, their GPs and their specialists to manage their conditions.
But even if we assume a My Health Record may save some lives because 0.2% of the 75,000 in-hospital deaths per year is still up to 150 people, assuming all those deaths were preventable; even if we accept that it might be more convenient than patients carrying scraps of paper with their medications written on it – the question then becomes what cost this may be to the individual, and to us all. I, for one, respectfully do not buy Helen Pitt’s argument of utilitarianism, not only because I see the cost as being disproportionately borne by the most vulnerable, but also because the benefit argument remains unproven.
We have heard the same vague privacy arguments for weeks. Law enforcement may be able to access data. Employers may be able to access data. Centrelink may be able to access data. This could be bad in a myriad of ways. And we have heard the same vague defences. That this is no different to credit card or other identity being stolen, and social media knows everything about us anyway, and that we should never assume any data is secure so how is this different?
The heel prick test
In 1975, the Australian government began performing critical blood tests on infants for conditions which could be readily treated if diagnosed in a newborn. Everyone who was born here after 1975 had a heel prick test done and a blood sample taken on a card called a Guthrie card. This was sent off for testing, and as parents, we likely held our own babies while this was done, and consented to the blood tests. What is less broadly known is that these Guthrie cards are stored, may be used for medical research without the consent of the individuals who provided the same or their parents, and means that a majority of Australians born after 1975 in Australia has a DNA sample in storage somewhere that can be tied to them personally – and we do not have any legislation restricting access to that DNA sample for either forensic or research purposes. In the past, these DNA samples have been accessed by police, most notably in Western Australia, ultimately motivating a Perth hospital to burn its collection of Guthrie cards to protect the identity of those born there.*
I probably don’t need to point out that this is the second anecdote I have shared of people burning identifiable records to protect the citizenry.
So while we don’t live in Europe in 1943, this country does undeniably have a history of discriminatory police and legal practices. We have had enquiries into the deaths of indigenous people in custody; we have seen videos of police beating the mentally ill when they were supposed to be doing a welfare check; we deport migrants and permanent residents for having health conditions. And although the vast majority of our hardworking police officers are law abiding, kind and good people – we know that the laws that govern this land, and the implementation of them, are not always just and fair. And the way Guthrie cards have been used in the past provide ample precedent that the My Health Records may well be accesses by law enforcement without regulation or warrant unless such restrictions are legislated first. And that access to patient files by police officers, prosecutors, migration and Border Control officers and a myriad of others with power may well lead to significant discrimination on the basis of health conditions or characteristics.
The vulnerable at risk
The AMA and Labor party concerns about the My Health Record, and calls for change stop at this point. But various law enforcement agencies are hardly the only people who can use data maliciously.
We are lucky to live in a country where our most disadvantaged do receive some financial assistance provided via Centrelink. But anyone who has ever worked with Centrelink or advocated on behalf of patients knows that it can be diabolically difficult to obtain certain payments such as carers payments and disability payments, with these requiring an excessive amount of assessment, evidence and paperwork to initiate and maintain these payments.
The recent Centrelink debt debacle, where computer cross-referenced misinformation resulted in payment demands being sent to thousands and thousands of innocent Australians, years down the track, really should erode our faith in the implications of a My Health Record being accessible and cross linked to Centrelink.
We currently have a government which seeks to reduce welfare access, and any means to do so will undoubtedly be exploited. These sorts of audits will target those among us least able to prevent it, and least able to deal with the consequences of it. Payment suspension while investigations take place already leave our sick and vulnerable destitute. It would take only one overworked doctor writing a note in the wrong history to trigger an investigation – and as a doctor who works with electronic medical records already, I can guarantee this happens relatively regularly.
The retort to this, then, is that patients have access to edit their record. This is as disconnected an argument as the idea that an increase in petrol price is just the same as a cup of coffee every week, and if people just gave up their coffee, they would be fine.
The most vulnerable among us don’t buy coffee. They also may not have computers. They may not know how to access their MyGov account or navigate to their My Health Record. They may not have the computer or language skills to access or understand their record, even if they can access it at a public library or other location. They may not know how to edit or delete records. They may not understand what their doctor is asking it is suggested that an event summary be uploaded after an appointment, and thus may not be giving truly informed consent as to what is being uploaded about them.
And although the notes from a consultation are not automatically populated, certain information, such as blood tests done and medication dispensed might be. Which, without any further text and even without the results of the blood test, can provide a comprehensive snapshot of a patients health.
Youth and women disproportionately disadvantaged
This sort of self-populated information is doomed to disproportionately disadvantage youth and women. Because the My Health Record is linked to a MyGov account, family privacy is eroded. Women who may see their health practitioner for domestic violence advice may be able to request that an event summary not be uploaded – but when she fills a prescription for the oral contraceptive pill, or for medical termination of pregnancy – it will be there for her partner to see. Older teenagers, who socially and legally have a right to medical privacy, may equally continue to have parental oversight.
I will be opting my sons out because one day, I want them to feel comfortable seeking STD testing without mum and dad finding out about it – because we know that as soon as people worry about medical privacy, they simply avoid presenting for care at all. I don’t have daughters, but if I did, I would opt them out because I would similarly want them to feel comfortable seeking care for contraception and termination services. I hope that my children will feel comfortable involving me in their care, but I also respect them enough to acknowledge that one day, they will want and deserve their own patient-doctor relationship.
Of course, a MyGov account can be password protected – but such things are usually not respected in controlling family situations. The fact that health records, prescription information and blood test information do not exist outside individual pathology providers or medical practices is one of the only protections for those facing family violence or vulnerability within the home.
Cynically, I think it is important to remember that a My Health Record is not being provided out of benevolence by the government in order to improve the health of Australians. There are far better ways of doing that – ways that are actually proven. Health promotion strategies which decrease chronic disease, economic policies which decrease inequality, greater funding for mental health care, funding for primary health care and primary care providers to name a few. A My Health Record might be a useful adjunct to these other policies but in and of itself, there is little evidence that it will improve health at a population level.
The My Health Records primary purpose is data collection and cost saving. It is to stop doubling up on Medicare funded investigations, it is to monitor prescription drug use, and undoubtedly, if used positively, the collected data could improve overall health in the long term – not by helping save the lives of someone arriving unconscious in emergency, but by demonstrating where health inequality exists and potentially how to address it.
The real question is whether this data will be used for good. We already have a plethora of health inequality data we already don’t act on. We already don’t regulate industries which actively harm health at a population level. It seems that even more data is just likely to be used to justify further poor policies, rather than for overall good.
Before this government foists a nationalised health record system on us, there are so many steps that need to be taken first. As Women’s Agenda contributor Kristine Ziwica said to me this weekend about another issue, you have to lay the runway before you can let the plane take off. To run with that analogy, this is a lumbering Wright brothers plane being billed as the newest Airbus being launched off some rocky uneven bush.
Policies backed by evidence and research needed, with funding
Both sides of government need to convince us that they genuinely care about the health of Australians. They can prove this by instituting genuine policies based on research and evidence. They can prove this by funding these programs adequately. They can prove to us that they care about health inequality, and the vulnerable. They can prove this by addressing the disproportionate health burden borne by these communities. They can prove that coordinated care will improve health by actually funding the services that rely on coordinated care, such as mental health, allied health and other support services.
They can prove to us that they care about welfare by not removing it from those who need it, and by not engaging in flawed and damaging auditing systems that disadvantage those who depend on it.
They can prove to us that they care about privacy concerns by actively investigating what those concerns are and how they may arise – because even though this could be the most comprehensive set of concerns yet published, I am sure to have missed major other flaws. They can prove that they will address those concerns by legislating restrictions on access.
Because right now, even if as an individual and a health care provider I believed in the health benefits of a nationalised health record, I should still consider the worst that could happen if we don’t opt out. Abuse of the system in ways which the government and peak medical body have not even begun to imagine, and legislate against. And even with tight legislation – the Dutch had and continue to have a regulatory body whose sole job is to oversee privacy of records – sometimes, to protect people, records will have to be burned.
Personally, in the current environment, with a conservative government doing little for genuine health improvement, I would rather not see those records written at all, than trust in the bravery of a few to later light a match.
*Guthrie cards are an essential part of newborn screening that save lives and can prevent profound developmental delays. The author does not, in any way, wish to suggest that Guthrie card testing should be declined. Parents and individuals who may have concerns about the retention of Guthrie cards can apply to have their own or their child’s Guthrie cards returned to them at any time.