Slashdot Mirror
Arguing For Open Electronic Health Records
mynameismonkey writes "openEHR guru Tim Cook, writing in a guest blog at A Scanner Brightly, discusses why Electronic Health Record developers should use open standards. Why are so few doctors using EHR systems? And, as more and more hospital EHR systems come online across the country, what do we have to fear from proprietary databases? It's one thing to find out your social security number was stolen. Now add your mental health and STD results to those records."
Primahealth: How are they secure with open standards? You can't have security without obscurity! THIS IS MADNESS!!!
Stallman: This is GNU/SPARTAAAAA!!!!
I think much of the problem has to do with legal problems on the storage of data and its dissemination (privacy laws, legal exposure etc) and that doctors have a general distrust of electronic record keeping without a paper backup. Also, arriving at an open standard on storage of health information is very very difficult as it's not a science and there are as many opinions as asses on seats at committee meetings. Everybody quotes easy stuff like pharmacy orders or pathology requests and results, but a health record can come in so many forms, (and if you look at a hospital record, there are so many types of forms in it) that it becomes difficult to come up with a database design that will cope with such diversity and still be usable. Information on a case can be a few scribbles to an exhaustive analysis.
That's not to say it won't happen, but it is taking a very long time and some expensive attempts at standardization (eg: NHS) have failed.
Do it yourself, because no one else will do it yourself. [beta blockade 10-17 Feb]
1. I don't get the article summary. Are my STD results somehow more vulnerable to theft if they are in a proprietary database format rather than an open one?
2. In my practice, we use an EHR (electronic health record) because I'm an employee of a big enough group that has the resources to purchase one of these expensive, bloated, not very well-maintained systems. (They're still working on making cut and paste work, and the group has to pay a bucket of money every month for ongoing support.) When I was a medical student in Ireland, I marveled how the GP I worked with in West Clare had a simple system he paid something like $300 which did everything he needed it to do, like track progress notes and lists, and keep track of drugs. That amount here covers about 30 seconds of use of our current software. Which is barely interoperable even with itself - if we see a patient from an affiliated private group using the same software, interoperability means they can email us a progress note, and then I can spend my afternoon hand-entering the medications and problems from their chart into my state of the art software's database to make sure grandpa doesn't crump over the holiday from a drug interaction with the cardiologist's new pills.
There isn't much incentive to make this software as easy to use as iTunes - the players seem to make plenty of money already with their proprietary storage formats and circa 1991 interface. There is no viable open source alternative (http://oemr.org/ doesn't look quite ready for prime time) - though I think there's an opportunity here for some enterprising Linux loving propellerheads.
The question that brought about the guest blog was; "why aren't primary care physicians adopting electronic health records?"
The answer is (primarily) because of misaligned incentives. Open specifications can help solve that problem. Especially ones that are implementable (some specifications are known to be developed in a committee room without being tested in software).
But the above post exposes a truth. Many proprietary companies are making money off of a few customers using the same old "upgrade tax" imposed by some operating system vendors. This is why applications based on truly open specifications can be marketed as being something different.
This is a very complex area with complex issues that vary around the world. However, the two level modeling approach used in the openEHR specs are being used in many places. Are we *brave enough* in the US to use something "not invented here"?
The UK has spent the last 5 years trying to build a common Health Record Database for all NHS patients. Those of you that are aware, the HNS is a public run service that covers the health needs of the entire population, although Private medical Insurance is available if required at extra cost. So far this "Database" has cost the UK Taxpayer £12 billion ($24 US Dollars) and has delivered nothing but chaos, confusion and a lack of investment in frontline databases that are currently in use, meaning that records go missing, data discs with confidential data get lost etc... http://news.bbc.co.uk/1/hi/uk/7158498.stm
The fundamental problem is that politicians think that databases are the answer to everything, being handy for issuing speeding fines, holding criminal records and identity details of everybody in the country, but they haven't quite got round to the concept that the accuracy the data within a database is the most important aspect and it is often the data processing factor that often falls down. They forget the basic fundamental questions like:-
How long does the data take to propagate into the system properly? If I tax my car late on Friday will the computer database not be updated until Monday, meaning that I'm going to be constantly pulled over by the Police and threatened with my transport being impounded for the weekend, even though it is perfectly legal?
What happens if the data is incorrect? Our beloved UK government wants an all encompassing ID card system, which will reference a number of different databases. How can they be absolutely sure that the data is at least 6 sigma (3.4 defects per million records) if not 100% correct (note that the old saying 99.9% doesn't even being to recognise the real accuracy required).
If the data is incorrect who is responsible? If there are many bodies involved, you can guarantee that none of them will agree who is at fault until lawyers get involved, especially if they are civil servants and/or politicians.
Who ensures that the data is secure? We in the UK had ZIP encrypted discs containing details of 25 million people (about 2/5 of the UK population) lost by the HRMC recently. http://news.bbc.co.uk/1/hi/uk_politics/7117291.stm
One the face of it using an open system for designing a database is a good idea in principle, but it is the people that are responsible for these databases that need to know exactly why they are important and why reliance on such databases is a recipe for disaster if proper considerations are not made. Part of the problem is that many of the people choosing these databases probably don't have a first clue in how a database works, that is the problem we face.
I did notice that this week the new Australian Prime Minister Kevin Rudd cancelled a National ID card system that was planed by the Howard Administration. This move appears to come from somebody that appears to understand the complex nature of such a system, its cost and its lack of benefit. There are many ways that can be used to determine somebodies identify (bank cards, passport, birth certificate) and having all of them referenced at the same place isn't the most cost effective solution.
In the UK, the government has invested vast sums of money into a system called "Choose and Book." It's billed on the slim selling point of offering patients greater choice in hospital care but the most cursory look at the technology involved shows that the biggest effect is that of centralising patient's records.
Aside from the fact that patients can be offered a choice in secondary care already (by their doctor referring them to somewhere else), the system is buggy and flawed. The doctors don't want it, there have been national campaigns by the public against it, but the government is doing every single thing they can to force it on people up to and including financially penalising doctor's practices for not using it. The motivations are (a) presumed financial interests in the big companies that are providing the system and (b) a burning desire to get hold of everyone's personal medical data for government and police purposes.
It's not even legal as the responsibility for patient confidentiality belongs to the patient's own GP and if there's a misuse, they will be the ones legally to blame for sharing the data. There's some information on it here
If there's a need for easily transportable medical records, then this can be resolved by putting the data in the patient's hands. Public-Private key technology, or even hashes of the data, could be used to ensure accuracy. The solution is not that complicated, but in the UK we're having a very hard fight getting it.
Aide-toi, le Ciel t'aidera - Jeanne D'Arc.
It's impossible to store in a structured manner health information because it's so complex and individualized. Think about how to store the following.
1) "My arm hurts right here!" "Show me?" "Here!" "Wait, it's here now" "No no, it's here now"
2) "It itches sometimes" "when?, where?, duration? during aligment of planets!?"
3) "You need to take xyz, twice a day for two weeks. Come back in 3 month, and let's do another check up."
If anyone wants to know how complex it is, try reading the DICOM standard which is just for medical *image* storage and exchange. It's about 3500 pages. The code for medical billing, which the article mentions, is already the size of a dictionary. And all it contains is entries for a simple code and a one or two sentence description.
Realistically, the best approach may be PDF's and full text search. Anything else is just not going to capture the full extent of the medical history.
I'm a doctor who joined a small practice a few years ago. The senior partner of the practice created his own EMR system. It's actually quite good and we use it exclusively. Our office isn't paperless, but everything coming into the office is scanned in or phoned into the virtual fax and never printed. We are able to access it from different offices and from the hospitals we go to via a VPN setup, and it significantly improves our efficiency.
Now the senior partner left. He didn't use a standard database format (but fortunately used Microsoft SQL), and we'll probably have to pay a fortune to have it converted to an open format. Fortunately he's being good about not charging the office for a license for his code, so we have time for the transfer.
Help! I'm a slashdot refugee.
Every week I have some patients who have come in from far away to see me with some X-rays, MRI, CT scans. Often they are on a CD with some strange proprietary program used to display the images. Often I cant open them up and look at them, and the person has made a several hour trip almost for nothing.
In that way old fashioned plain images are better.
Having open source images/records would also eliminate that problem too, as I could display the images, and not have to find/buy/ download some strange/clunky program.
Most radiologists and newer surgeons really like electronic imaging, but it can backfire on you as well.
..........FULL STOP.