National Electronic Health reforms, Aussie style.

For 14 months, Australia has had an electronic national health register. It has almost nothing in it, but the hope is that in years to come (when lots of people have registered) it will start to have all the information on someone’s health that floats around in the health industry. This includes discharge summaries, the history of medicine use, databases on allergies and conditions, payment histories, dental records, childhood illnesses, vaccination history, and treatment plans.

This health register was initially championed by Tony Abbott when his party was last in power and he was the health minister, so now that he is the Prime Minister, its future looks safe for the next few years at least. Let me, as an interested but only average-informed health watcher (so don’t kill me if I make a faux-pas below!), talk through the possibilities of this health register, the failures to have health registers in many countries, and the wondrous ways in which the Australian variety seems to have benefited and thrived from a lack of foresight, a lack of consultation, a lack of expertise, and a lack of money. It is somewhat unusual and incredible from the point of view of normal economic thinking about reform, but we seem to have a policy area here in which it seems an advantage to bumble along in the dark, rather than be well-prepared beforehand.

But let us start with what we ultimately might want out of such a register.

The long-term usefulness of a national registry is enormous. Instead of each hospital ward and each GP having their own separate 20 datasets each on patients, staff, and payments, you would have just one. Doctors and nurses would type their diagnoses and delivered treatment onto an iPad, send it to the database and the whole rigmarole of insurance, subsidies, and passing on information happens automatically. With national-wide access, health professionals everywhere would know all they need to know about each patient without having to attempt to contact the 50 other places that person has been in so far. Even within hospitals and nursing homes there would no longer be a need for staff to meet and compare notes on patients and residents. Patients wouldn’t have to constantly fill out huge forms, nor worry that the allergy they forgot to mention this time leads to them being prescribed the wrong medicine. Essentially this means fewer mistakes and fewer forms.

Down the road, an electronic health register would become the logical vehicle for all monetary transactions in the health system. GPs and hospitals would be paid according to continuously updated health plans devised by diagnosticians including GPs and Artificial Intelligence diagnostic tools; inventory and usage would be deduced from this register; salary and accreditation of health workers would go via it; taxes and subsidies would flow within it. Effectively, a national electronic register could be the roadmap and marketplace used by all health professionals for all interactions with patients and others in health land.

This utopia is however far away. Many countries have tried to set up national registers and so far have little to show for it. Apart from a few small countries like Estonia that has a national system set up to record medical histories from birth to grave. This is partially due to the sheer complexity of information in the Health system: every tom-dick-and-harry has got his own software, IT specialists, specific needs, conventions, and incentives. As mentioned, your average GP has not one but twenty information systems ranging from an inventory of needles, to the salaries of the people working for her, to records of patients’ visits. There are thousands of pages of information on your average patient meaning that it is not only a hell of a job getting it into an electronic format, but you then have to find ways to condense it to be useful for anyone. There are pure technical difficulties, as well as the drama of matching records that use different naming conventions. Not all records are electronic either, a big issue in the UK National Health service where handwriting is a treasured art form.

Yet, the few small countries that have a system have indeed gone towards the utopia I described. What starts out as voluntary becomes compulsory, exemplified by Finland that now mandates all health professionals to use the system. What starts with information dispersal ends up being used for money, exemplified by Estonia that now uses its health records for medical invoicing.

Bigger countries that poured money into this have seen their efforts thwarted. In the US, the system is a mess tied up in red tape. In the UK, they abandoned their efforts of a national register, just as they have in the Netherlands. New Zealand also gave up. Canada and Sweden have regional initiatives but no national system. The only countries that have something approaching a national electronic register are Denmark, Estonia, and Finland. These countries were able to use their existing population registers and national health systems as the starting base, and managed to steamroll all privacy and vested interest issues up front by giving clear parliamentary approval. These are great examples that Australia unfortunately cannot follow.

The main reason why no Anglo-Saxon country has come close to a proper national health register is the politics of change. Everyone and his dog want their complaints met beforehand. Some complaints are valid, some self-serving. What about privacy? Who will check the accreditation? Why would early adopters bother to send data to something that is only useful to them if everyone else sends data too? Who is going to go through old dental records and how should they be standardised? How are you going to compensate hospitals for the expense of adopting the new system? How would you transition from the existing systems? What about private health care providers? How can you actually tell who is who when you lack a national identification register that covers the whole population to begin with?

These problems are so formidable that they have baffled the best efforts of countries for decades. The Netherlands for instance had a dedicated organisation work on this for 30 years, only to eventually fold without much to show. The UK poured billions of dollars into this and tried to engineer a system from first principles, eventually giving up (though they might try again). Every time these countries came up with plans there would be something that wasn’t to the satisfaction of some interest group who politically blocked it.

Why would Australia succeed when other, much bigger and more heavily resourced countries have failed before?

I have watched the Australian effort, concentrated in the National E-health Transition Authority (NEHTA) from the sidelines and have been amazed at the difference in the Australian approach to the European or American approach. It is a quintessentially Australian approach to change that might just work.

The key strengths of the NEHTA initiative are a lack of foresight, a lack of consultation, a lack of expertise, and a lack of money. Each of these is an enormous blessing in disguise when it comes to the problem at hand. Let me explain, for it is truly quite wondrous that these things should be strengths.

A lack of foresight in this area means that you don’t try to deal with all the problems that might arise. You essentially just do your best to guess the major blocks and then you improvise as the problems hit you. And the problems are stupendous, ranging from incompatible programming code to dysfunctional organisations who don’t want to play ball, emerging privacy issues, game-playing private contractors, opportunistic politicians, and high staff turnover.

The ‘let’s just forge ahead and adapt as we go along’ strategy is in essence a much smarter strategy than trying to work it all out beforehand, simply because it can’t be done. It’s too hard to anticipate the millions of different scenarios that could happen to derail original plans. Indeed, the outcome we have now hardly resembles the unrealistic plans of just 3 years ago. Strange as it may seem, but a lack of foresight is proving a blessing when it comes to setting up this sort of system, for it means we have not set up internal systems (and groups protecting them!) that prove to be unworkable and that would pertain to an imagined outcome that never arose.

All NEHTA has ended up with sofar is a bare-bones framework and a vague idea of where we might end up. Its strength is the agility of experimentation versus the rigidity of planning. And one of the funny things is that NEHTA of course has continuously pretended to have planned everything that is happening whereas it in fact has just been stumbling along from one unexpected problem to the other, adapting, cutting, and axing its supposed grand plan as it went along.

A lack of consultation is proving similarly crucial in this initiative. True consultation with lobby groups would mean every stake-holder would be warned about what they actually stand to lose down the line when the register gathers pace. After all, a system that is used for the flow of money, will undoubtedly also lead to changes in the way that money flows. A fully functional register would tell a health ministry which hospital and which health specialist is doing unusually poorly or is curiously expensive. The register would thus be the natural vehicle for organising competition between institutions and professions. Imagine having to negotiate with those professions and health providers that secretly know they are inefficient, on a system that will eventually expose this and cut out their slice of the pie!

The great thing about a lack of consultation is thus that you let sleeping dogs lie. There are still plenty of dogs barking, but not half as many and not half as vicious as they would be if they fully realised what is at stake. This is for instance the main mistake that was made in the Netherlands – consultation killed the process because too many stake-holders were alerted to what they might lose so they developed and voiced one objection and political road block after another.

A lack of expertise is also proving a major blessing in disguise for this initiative. By lack of expertise I mean that the builders of the national register had almost no clue of the difficulties faced on the ground by health professionals and patients. They were a bit naive. As a result, when major fundamental problems were discovered weeks before major elements of the national register were supposed to go online, quick pragmatic solutions were put in place with almost zero consultation that should greatly increase the eventual usefulness of this thing. Consider as an example of this, the initial inability to foresee that you have to bribe individuals uploading the information in order to get them to do it. Its basic economics that you have to do this, but a lack of expertise prevented them from seeing beforehand how important incentives really are. They were instead actually counting on the benevolence of the health professionals to complete all the uploading work. Due to a lack of expertise and realism, this major design element was overlooked, and had to quickly be worked out when spotted. This then lead to a payment for doctors and other health professionals to upload information to the system. This in turn, via the backdoor, established the principle of payments via this electronic register on the basis of system usage. It is a principle that would involve years of political wrangling if you had to discuss it beforehand, because it is so obvious where it would lead once in place. Hence, a lack of expertise has effectively allowed a crucial and politically sensitive mechanism to be smuggled in at the last minute with no organised opposition!

For a completely different reason has a lack of money proven a blessing in disguise. Fully establishing and implementing a national electronic system would cost tens of billions of dollars to do properly. Instead, Australia is doing it on the cheap, pouring no more than half a billion per year into this.

Imagine if tens of billions of dollars were available on the table for this. The vultures would be circling. If health providers knew that kind of money was on the table, the negotiations about implementation and bribes would be endless. Private contractors would game everything to the max. Different ministries would be claiming ownership over part of the enterprise in order to tap into the money pot. The shoestring budget this endeavour is on has thus protected it from big players and allowed it to slip under the radar and get going.

So we now have an embryonic national register with minimal bells and whistles that is of limited use at the moment, but that has great potential. Should it now attract more funds, more expertise, more consultation, and develop greater foresight in order to realise its potential? I sincerely hope not for it would be the surest way to kill it off! In order for it to grow and gather applications, it needs to first quietly experiment, make mistakes, find the most useful and docile users first, and slip in the major elements that will make it useful down the track. It is way too early to be investing big money into it.

Only once it has been established for a decade or so, with a secure operator, full functionality, and all the important usages in place, would this be safe from political obstruction. Would we eventually need a big push for a national electronic health register? Perhaps we will if the system was used as the main conduit of money in the Health System. Though maybe that can be slipped in quietly too.

Hence it is a case of so far so good with the National electronic health system in Australia. It remains a wonderful example of the genius of Australian institutional innovation at work. With less resources, less planning, less consultation and less expertise than other countries (like the US and the UK) we seem to get more results than others. Who would have thought?

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Factory
Factory
8 years ago

health professionals everywhere would know all they need to know about each patient without having to attempt to contact the 50 other places that person has been in so far.

This. How a doctor deals with a new patient coming into hospital:
1. Do an interview with the patient, trying to get alot of medical info out of a person that doesn’t understand medicine, and who may very well be metally confused or demented.
2. Manually call on the phone any previous doctors that the patient has been treated by in the past to check what the patient said or to go into more detail.
3. Write all this up. This may be done on paper or via a computer system, depends on the hospital. Usually there will be a computer system, but the age will vary.
4. Treat the patient.
5. Write up a discharge summary, I have no idea how available this is to other doctors.

A rather large waste of time. Note that 2 is prolly open to large amounts of abuse due to the relative lack of security.

Marks
Marks
8 years ago
Reply to  Factory

The problem with such a system is this: Let’s say that someone comes into the surgery with a problem. That gets referred to a specialist who makes a diagnosis. That then goes on the system, and especially if it is a non-curable condition the patient gets treated for the condition forever.

Fine, if the diagnosis is correct.

However, if the diagnosis is wrong, then that person can get wrongly treated for the rest of their lives for the reason that once it is ‘in the system’ it is very hard to get out – even if you know enough to get it out.

For example, I had a minor but irritating condition. I got a diagnosis from a specialist in Adelaide, was not happy, but had the diagnosis confirmed on second opinion. I went to Europe, and on the way stopped off at Bumrungrad Hospital in Thailand – another diagnosis by a specialist who had not seen the Australian diagnoses, and a different treatment. Then I went to the Czech Republic and had a third diagnosis and a different treatment yet again.

That is, there were three different diagnoses from four different specialists. However, where the specialists were able to get hold of the opinions of the first specialist, they concurred.

What my own experience tells me is that sharing this sort of knowledge is a double edged sword.

john r walker
8 years ago

Paul you are a sly bugger…. you know perfectly well that this is how life has, for at least 500 million years, built/adapted, blue whales out of shallow water sem-aquatic/ wading predators, cassowaries out of dinosaurs and so on :-)

Gummo Trotsky
Gummo Trotsky
8 years ago
Reply to  john r walker

The key strengths of the NEHTA initiative are a lack of foresight, a lack of consultation, a lack of expertise…

Three great strengths of Microsoft which it has retained since it started in the 1980s – they have however lost the strength of lack of money. And so, 3 decades later, we have Windows 8, with a spiffy new Blue Screen of Death, which finally takes full advantage of the capabilities of a graphical user interface.

john r walker
8 years ago
Reply to  Gummo Trotsky

Actually it takes a lot of expertise to create a operating system where you need a expert simply to thoroughly delete all of a application , a system where important system files are not necessarily clearly labeled (or in the ‘system folder’) and so on.

Gummo Trotsky
Editor
8 years ago
Reply to  john r walker

All too true John – and ironic. It’s a bit like all those years of study and practice you have to put in before you can be hauled up for repeated surgical malpractice.

Dave
Dave
8 years ago

This is by far the most interesting post of yours I’ve read. Well done! I love the counter intuitive moral: To successfully enact complicated bureaucratic reform, we should underfund it and appoint people without expertise and foresight that do not consult widely.

derrida derider
derrida derider
8 years ago

Yes, kludgeocracy is commonly the only way things can be managed at all – something Don’s post below fails to acknowledge. Old bureaucrats like me have usually had to learn the hard way about the perils of being seduced by apparent tidiness, and the related tendency to overestimate our ability to control things.

Nitza
Nitza
8 years ago

Nothing like blue sky to sell a concept.

I grew up digital and type really fast. Even so, I reach for a pen and paper to take notes. There is nothing more frustrating than being in a consult with a doctor whose attention is with the computer rather than you.

An entire life’s history? There probably are cases where that is helpful, however most cases will result in all that information being overload. Worse, yet, doctors are human and tend to be drawn to unusual entries. I’ve been taken to hospital with a life-threatening bacterial blood infection. Guess what? The doctors found that me being trans was far more interesting than the fact that I came close to death due to bacteria in my bloodstream. The latter is kind of scary; the former is rather boring. I wouldn’t have disclosed that information had I been conscious upon admission, but my family did, without malice. By the way, many doctors are perverts – yeah, what a shock.

Lest we forget privacy. Had a lithium serum test? You’ll be written off as a nutcase. Been tested for HIV? Yep, the doctors might well fixate on that. Worse, the number of people with access to this information is too large. This will be notorious, as will data sharing, and so people will withhold information from their doctors.

From memory, the electronic health record here were supposed to be personally controlled. Does that mean that the person to whom they pertain can read them at any time? Can that same person purge irrelevant or insulting/loaded notes from doctors (shock: some can be petty)?

Sure, this will be rammed down our throats. Maybe it would be better if the powers that be jumped to the end, as was done in the Netherlands, so that the idea can be spurned as one would spurn a rabid dog.

The one way in which this whole thing might work is to limit the information that is uploaded, ideally in consultation with the patient/client. When you think about the pages that accumulate in a GP’s file, and then think about what is really significant to anyone, there is a huge discrepancy.

Having received very good care overseas, I’m not averse to pursuing that avenue again. At least other nations don’t have our libel laws which prevent full and frank discussion of doctors, hospitals and their results. Now that is an electronic health record system I’d love to see.

Finally, and very off topic, instead of wasting time with plain packaging of cancer sticks, why couldn’t the government have required that all manufacturers, both original and generic, produce pills of the same size, shape and colour.

Factory
Factory
8 years ago
Reply to  Nitza

“An entire life’s history? There probably are cases where that is helpful, however most cases will result in all that information being overload.”

When you are going into hospital this will be one of the first things you will be asked about when you get into hospital. To be fully qualified doctors are specifically trained and tested to get this information out of you, to sort through it for useful information as to your current predicament, and how to manage it.

If you have a problem with every doctor you meet knowing your life history, NEHTA isn’t your problem, it’s the way that medicine works.

derrida derider
derrida derider
8 years ago
Reply to  Factory

Yes, but you can choose to be selective in giving your medical history to that nice young med student they sent to ask it. That has obvious dangers and it’s certainly inefficient, but at least the patient is in control. It’s another thing if the student can only get other doctors’ versions of that history.

murph the surf.
murph the surf.
8 years ago

For identification purposes I would guess.

Tel
Tel
8 years ago

http://www.pcworld.com/article/2054600/obamacare-portal-suffers-from-common-ehealth-government-disorders.html

Spooky the way so many Western nations crash in the same way simultaneously, almost like some invisible hand or something.

Robert
8 years ago

One major downside of such system is being hacked and all the data would be available to anyone, privacy isn’t an option anymore in the world of today, where Google tracks everyone on the internet – so having clinic data on every citezn wouldn’t be too awful as well i suppose.