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Anger Over EU Medical Data-Sharing
ukhackster writes "A row is brewing in Europe over plans to make medical records available across the EU. The scheme calls for interoperability between health systems in 22 different countries. Experts are predicting that security problems could expose confidential patient records, with one calling the affair 'a colossal waste of money and energy.' This 'e-Health' initiative reflects similar projects in the United States, and raises many of the same issues discussed here. The article makes it clear that many important issues, such as security, privacy, and the rights of patients, are still up in the air as the project moves forward. Could this be another huge IT project disaster on the horizon?"
The advantage is that it is possible to get your medical journal when you are visiting a different country, which in turn can improve the ability to get the correct medication and avoid medical hazards.
The disadvantage is that it may be used for privacy invasion. There are certainly other risks involved too not to forget the cost that may arise to unify all countries.
Anyway - one way to provide some patient security would be that identification of data and access control to personal data has to be restricted. A multi-level approach has to be in place for the best security. One way may be to use smartcard-equipped health-cards. The card will then hold the key to access of the data. Of course there has to be security measures involved too to handle lost cards etc.
If builders built buildings the way programmers wrote programs, then the first woodpecker would destroy civilization.
What I find ridiculously in this whole affair is that the most important question is never asked. Do you want to join and be entered in our system?. I've worked in a similar project where some twenty-ish GP offices were joined in one network, in the Netherlands. Were the patients ever asked? Noooo, the GP just signed a paper where he agreed for all his patients who could then opt out. But most of the time, they wouldn't know about it.
And there comes the whole point: these medical data-sharing networks are useless if there isn't enough data. So nobody (the IT supplier, the medical organizations) has any incentive to keep patient data from being shared.
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Proper planning and recources could make the transistion easy.
This is government we're talking about. You must be new here. And by "here", I mean the world in which we live.
Its always the IT guys who get blamed for cock-ups on a colossal scale. Occasionally, yes, bad decisions are made or poor execution is to blame. But at the supra-national level, the big mistakes are political ones.
Only governments can waste billions of Euros trying to achieve some kind of "Harmony" across political, linguistic, cultural and privacy borders. This usually fails miserably. The only success governments have at cross-border enterprises is in killing their citizens in wars.
A simpler solution would be to agree on a standardized data format and data content for medical records. This alone would take years. Then a common data-medium (chip cards, whatever) could be issued to those citizens who desire one. Everything else need not be regulated, everything else should be firmly in the control of the people.
They who would give up an essential liberty for temporary security, deserve neither liberty or security - Ben Franklin
I designed a similer system for the NHS in oxfordshire, england, way back in the 1980's. Such was the lack of understanding about IT at the time that the project floundered and failed, in spite of the year I spent coding the darn thing.
Mine was not for general patients though, it was for people with learning disabilities, so their care needs could be available should they be hospitalised whilst on holiday or on some other excursion from home.
In my system, records were temporarily made available to the region that the client was visiting, but only able to be accessed if a nominated individual requested them. By therefore involving a human in the process I sought to reduce the chances of sensitive medical data being released to the wrong people. This was pre interweb, so the method of making available was arcane, but effective.
Sadly the project failed because of monumentally crap management. In that way at least the project was ahead of it's time....
As a case in point, a few years ago in Sweden they harmonized the medical IT systems in the whole country. The politicians in charge awarded the contract to a company that offered a relatively cheap solution and that had a great marketing department. Unfortunately, they were incapable of delivering an adequate system. The huge amount of work and complete lack of proper requirement specifications led to a buggy and deeply flawed system. A quite common case is where a physician asks for the record of one patient and gets the record of somebody else. The user interface was also horrific - to register a new patient something of the order of magnitude of 100 clicks is required.
Once the problems became apparent, it was too late to do anything about it as the budget for the whole thing was already used up. Now, it is easy to blame the developer of the system - and to a large degree it is their fault - but the first cause of the problem were politicians who had no clue about neither IT nor medicine.
In the Netherlands, about 60000 hospital admissions can be attributed to avoidable problems with medication (e.g. taking penicilin whilst being allergic to it). The information is there, it's just not accessible. Yes, this is a serieus problem and IT can make a difference. In different countries there are different approaches:
- In the UK, all medical information will be put into one huge central database ('the Spine'). All pharmacists, phycisians and GPs can choose between about 4 programs, all government mandated. The project is suffering from huge delays, widespread criticism and is already considered a failure.
- In Germany, all medical information will also be stored in a central database. Everyone will get a smartcard which will be needed to access this information. This will ensure patient control over their information.
- In the Netherlands, the main idea is that the care provider will retain control over the patient data. A central directory will know the whereabouts of this information and serve as an information broker between Healthcare Information Systems. Eventually, all software will have to support certain interaction with this central directory. The interactions will be based on HL7v3, an international standard.
Since I am involved in implementing the dutch system, that's the one I know most about. I believe it's a good idea and a good compromise between availability of data and privacy. That being said, the system (called AORTA) does have some issues which will need to be resolved before widespreak adoption can take place.