Het EPD, Aussie-style | deel 1

ANALYSE -  In Australië werkt het Elektronisch Patiëntendossier (EPD) door een gebrek aan visie, expertise en geld. Dat is een zegen voor het systeem, beargumenteert econoom Paul Frijters. Vandaag deel 1, morgen volgt deel 2.

For fourteen 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, 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.

Usefulness

The long-term usefulness of a national registry is enormous. Instead of each hospital ward and each GP having their own separate twenty 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 fifty 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.

Utopia

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.

Thwarted efforts

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 NetherlandsNew 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 thirty 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?

Dit is deel 1 in een tweedelige analyse van de Australische variant van het Elektronisch Patiëntendossier (EPD) van Paul Frijters. Morgenochtend om 7 uur volgt deel 2.

  1. 1

    Het is nog maar de vraag of dit uitgeklede EPD werken zal.

    Artsen hebben weinig belang bij het invoeren van gegevens voor anderen.
    Maar misschien wordt dat langzaamaan verplicht.

    De auteur zegt zelf:
    “What starts out as voluntary becomes compulsory”

  2. 2

    ” Even within hospitals and nursing homes there would no longer be a need for staff to meet and compare notes on patients and residents.”

    Dat lijkt me onjuist. Overleg is in eerste plaats overleg: waarbij er dus interactie is tussen de diverse stafleden. Je spreekt elkaar, reaageert op elkaar, daarbij komen subtielere dingen naar boven dan in een schriftelijk document. Het is volstrekt inefficient als je dat allemaal op papier zou doen, praten gaat echt sneller en komt duidelijker over, omdat je meteen feedback hebt of de ander weet waar je het over hebt.

    ”Essentially this means fewer mistakes and fewer forms.”

    Wat de formulieren betreft wil ik het nog wel geloven, maar de fewer mistakes? Is dat al bewezen? Hoeveel van de fouten worden er gemaakt doordat zorgprofessionals niet over de benodigde informatie beschikten? En zou die informatie via het EPD wel zo goed zijn ontsloten dat ze anders die informatie wel zouden hebben gehad, bij dezelfde tijdsbesteding? Hoe vergelijkt zich dat met het aantal en soort fouten dat gemaakt wordt in situaties waarin de behandelaars wel over het dossier beschikken? (Dus zelfde arts, of andere arts zelfde afdeling, die in principe de beschikking heeft over dezelfde gegevens.)

    Ik hoop nog steeds op cijfers. Echte, pure, meetbare cijfers.