Arguing For Open Electronic Health Records 111
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."
I seriously doubt it (Score:2)
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Re:I seriously doubt it (Score:4, Insightful)
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.
Re:I seriously doubt it (Score:5, Informative)
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.
Choose and Book is window dressing. (Score:2)
Patients don't WANT a choice of specialist hospital or doctor. They just want to go to the best one, and they don't have the specialist knowledge to make that choice, so they will ask their doctor.
The proper implementation of C&B is therefore to give a client to GPs
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It's a data exchange format that *all* health care insurers and providers must accept or provide when exchanging patient data. It's trivial to add to the spec rules for additional subloops containing text. There are codes and modifiers enough to cover damned near any medical situation.
Many small doctors avoided electronic data altogether by doing as they'd done for years, namely keep paper records. That is until insurance companies began deprecating paper... by not accepting pap
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Arguments for and against. (Score:4, Informative)
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.
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I could've sworn there was a recent Slashdot post regarding the successful deployment of OpenVista, and Open Source EHR system, as well as EHR Adoption in the US.
The problem isn't impossibility but infancy. There are good systems around but making them work across the board has been the problem. For example, in my neck of the woods the big problem is ignorant and territorial IT departments in both the public and private health systems which do not want to do any work but see their job as shopping around for people to outsource their work to. And because they get taken to expensive dinners by big companies with crappy solutions, they create 'guidelines' which exclu
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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"
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In 20 years of Health IT development, the majority of hospital deals I have been involved with have been thoroughly planned by the purchasers chosen overseers, who have specified what data storage and sharing standards they desired. Most of our solutions have been implemented in sites that have a number of different systems, a base PMS for instance, which the IT solutions i
What? Me worry? (Score:3, Insightful)
This is Slashdot. An STD would practically be a trophy here.
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SECURITY (Score:3, Funny)
Stallman: This is GNU/SPARTAAAAA!!!!
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A lot of old fashioned GP's actually consider the medical records they have accumulated to be their own property, and they don't see why they should hand over the results of their own hard work to some other health care provider. An astonishing attitude, but one that I have seen expressed on a number of occasions.
You better not be seeing that attitude any more because it's illegal. That's one very positive thing HIPPA has done. As the patient you control your medical information and your access to that information is required by law.
Open Standards bad (Score:2)
So, from my point of view, the harder it is to integrate electronic health records from disparate systems, the better. The more proprietary and undocumented these systems are, th
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Under the condition that no data can be accessed without explicit permission or in life or death situations.
To make it simple, going to the GP would give the GP a brief overall view of your records.
If the GP wants to delve in deeper then you need to 'unlock' the data.
And the GP can access the data for a period of time. Lets say a week.
If you've got cancer or something else with long term treatment then your doctor wou
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I really don't like using biometric data as passwords for anything as important as health records, since they're irrevocable.
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20 if you dont mind that kind of thing.
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Who owns it (Score:3, Insightful)
A better question is who owns your record?
An unsettling issue is that the doctor or hospital generally considers that THEY own your record. Think about that for a second...detailed records of you and your peccadilloes and someone else thinks they own and have the right to do what they want with your data.
In a world where that little vulnerability were straightened out open standards based ways of working with your personal data would come by default. You should be able to store and deploy your data, under your control, will any medical professional only being allowed to access and add to those records with your permissions. The only way to make that work is for hospital systems to use open standards, no more proprietary systems and no corporate data caches.
OpenEHRs are a sideshow next to that.
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I have only heard one case of a doctor thinking they own the medical records of a patient. All other doctors I know are happy to share records with other doctors once they have confirmed that the patient actually consents to that. I've never had any trouble viewing my record with any of the doctors or specialists I've visited in my time.
The one case I heard of was a deceased doctor. His son took ownershi
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You should be able to store and deploy your data, under your control, will any medical professional only being allowed to access and add to those records with your permissions.
Then how do you prove something like Medicaid fraud? Which is rampant. Or be alerted to people clinic shopping for pain meds? Also rampant. Many times hospitals have to comply with laws that make them or your doctor responsible for someone else getting silly.
Generally I tend to side with your viewpoint but I've also come into c
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One small problem with that... (Score:2)
Or many other diagnoses or bits of information that patients do not want providers to access but which are important to their care. Like drug abuse, blood born or sexually transmitted disease, or other mental health problems. A pregnant woman with pelvic pain with a hist
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That's why we have laws about access to them and privacy concerns about them.
The medical practice is the one that makes the records, puts them in a form (hopefully) most useful to them, and needs to reference them and share them with other caregivers in the course of caring for you.
Most people wouldn't have a clue what they contained even if they read them.
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It's a mistake to assume that information, particularly information assembled from a multitude of sources (such as an EHR) can be owned. Any system which purports to give you "ownership" of your EHR is also giving you a false sense of security. Nevertheless, some kind of access control is imperative for EHR's, both for reading and writing. But it needs to be flexible enough to avoid impeding the sharing of information about a particular patient between potentially many caregivers for that patient. A sys
You own it (Score:3, Informative)
* Not all data in an EHR system relating to you is actually part of your medical record. There may be - probably is - some internal clinical communication attached to your chart in the course of clinical operations. Basically an EHR system usually tracks both your record and the providers' own record about you. These different classes of dat
My stolen STD records? (Score:3, Interesting)
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/ [oemr.org] doesn't look quite ready for prime time) - though I think there's an opportunity here for some enterprising Linux loving propellerheads.
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Linux Medical News http://www.linuxmednews.com/ [linuxmednews.com]
OSHCA http://www.oshca.org/ [oshca.org]
Openhealth mailing list openhealth@yahoogroups.com
There you will find that there are several ongoing projects as well as companies providing support.
Still the issue remains (in the US) around who is paying and who is benefiting.
Once the various vendors (open or proprietary) realize that they MUST work together then
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I wish I had your optimism. I spent some time discussing open-source options with IT people in US community health centers, organizations with small budgets and difficult patient loads. You would think that, of all people in the medical community, CHC's would be among those looking for low-cost solutions like op
The alternative is worse (Score:1)
We can keep our data very safe if they never input it into computers. After all, there would be no benefit to correspond with the risk, yes?
Non sequitur (Score:2, Insightful)
I don't see the connection here. Generally users interact with applications and the applications interact with the DBMS. So while it may be true that some are more secure than others, it's largely irrelevant. The organisation's policies anmd procedures are much more important, given that the weak point is usually the carbon u
A Disaster Waiting to Happen (Score:5, Interesting)
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 [bbc.co.uk]
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.
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Wow, the pound sterling obviously isn't the stable currency it once was!
For twenty-four bucks I wouldn't sweat it (Score:1)
For twenty-four bucks I wouldn't sweat it.
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That said - there is one good thing to come from HL
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There's no standard because it's impossible. (Score:5, Interesting)
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.
This "openEHR" thing is a meta-standard (Score:2)
Whether successful or not, the openEHR [openehr.org] standard discussed in the article attempts to solve this problem by creating a kind of meta-standard where descriptions of data and documents are used in a flexible way. This manner of organizing storage is extremely open ended. There is a graphic overview covering this that can be downloaded from the "Quick links for ... IT professionals" link on the right side of the main page (PDF [openehr.org] HTML [openehr.org]. The design is object oriented and general such that it could be applied to ot
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Frankly, NLP just isn't there YET. Even using proximity rules etc. it is just too imprecise to develop a context from natural language from a document (like PDF) that can be used for analysis, decision support, etc.
No mod points, sadly... (Score:2)
THOSE kind of consultation. Yes, I know and understand, and show all my sympathy.
VistA. 30 years old -- Mature and Fully Featured. (Score:2)
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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.
It's not that bad. Sure, there are cases where symptoms have been reported but no solid diagnostic conclusion reached that can only be stored as text, but there are plenty more cases where a diagnosis can be made, and IDC-9 codes (or whatever -- the lack of standardized coding is a real pain) can easily express the result.
I've spent some time working with the AAFP group who is developing the Continuity of Care Record [wikipedia.org] (CCR) data format, and while there are some areas in which it can be improved, an inab
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In any case, thankfully the powers that be (i.e. the two separate groups making CDA and CCR) came up with a new combined standard called CCD which is essentially the CCR record packaged into a format that the CDA carries.
I am surprised yo
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My understanding is that the first version of CCR was easy to use and wonderfully focused on the needs of clinicians wanting to exchange data for the CURRENT encounter. The second version where they tried to make it as powerful as CDA made it a royal pain in the ass to use.
You must be thinking of something else. The CCR was never about an encounter, it was always a portable history. Not only that, the second version of the CCR hasn't yet been released.
In any case, thankfully the powers that be (i.e. the two separate groups making CDA and CCR) came up with a new combined standard called CCD which is essentially the CCR record packaged into a format that the CDA carries.
There has been an effort to combine CCR and CDA, but it's an abysmal failure. Meanwhile, the CCR workgroup is still active and energetic, working on improving the standard and on getting more real-world systems to support it.
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As for CCD being an abysmal failure, I think you may be incorrect. CCD was just approved by HITSP and is moving forward. From article http://ww [modernhealthcare.com]
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I see major problems: chief among them are the medical problems listed under "my problems."
"Heart disease" is extremely ambiguous. CHF, or coronary disease?
"Blood pressure, low" ? How about "Blood pressure, high" which is not listed and a far more common problem.
Kidney disease which is EXTREMELY common is not listed.
Was this part designed by physicians or computer people?
Otherwise I think you're doing a fine job.
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Is that the actual product?
It's a demo of one sort of interface that can be used to populate a CCR.
I see major problems: chief among them are the medical problems listed under "my problems."
You're just looking at the UI. The CCR format stores diagnoses as ICD-9/SNOMED/etc. codes, so anything that can be coded can be represented, and anything that can't be coded can be described textually.
Was this part designed by physicians or computer people?
I have no idea who put together the demo.
That one's easy... (Score:1)
The patient's finger is broken.
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For the complexities of medical charts and notes you are probably right. However, certain well known and structured information, particularly billing, could definitely benefit from a more integrated database oriented approach to processing. The data set could probably be simplified drastically if, instead of looking to model the structure of ALL medical da
Open health standards (Score:1)
Or the non-existant opt-out for your confidential medical records being know to millions of bribeable public sector workers... private investigators, crooks etc..
http://www.nhsconfidentiality.org/?page_id=3 [nhsconfidentiality.org]
"Why are so few doctors using EHR systems?" (Score:3)
I have a friend in the healthcare IT business who claims that they are actively sabotaged. Many more are derailed before they ever get started. Doctors prefer paper records that cannot be efficiently mined for malpractice lawsuits. Paper records that can be conveniently lost.
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The main problem in EHRs is that they are designed by programmers. They are built around databases, and force doctors to change their practice in order to fit the database. ARGH!!! Dumb, DUMB, DUMB!!!
I have been using a huge, nation-wide EHR for 3 years. From the get-go we found that the input was unusable: we had to type about
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Many of the systems we're forced to use were clearly designed by programmers (a group of which I include myself) but NOT by physicians (or nurses).
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As a statement of simple fact, this is true. As an emotionally-loaded blanket condemnation of EMR systems, this is bullshit: it fails to mention that projects for actual patient records also keep succeeding.
I'm a technical guy working in a midsize primary care clinic.
We've been on EMR since late 2000. Yes, there was resistance to EMR, but not because of the nefarious motivations you postulate. It was more that the older providers had been practicing wit
needed, constrained by responsibility and security (Score:2)
That some kind of solution other than paper records is needed is obvious to anyone. Most existing systems have limitations, but compared to paper records which take up large volumes of space, are highly vulnerable to loss and theft, and can't be easily indexed almost anything is an improvement.
The main obstacle to adoption pointed out by the article is responsibility. Systems would most likely be put in place by providers who would have the most to loose from the costs and the least to gain from the impr
Why doctors are reluctant to use medical software (Score:2)
An entire hospital payed over twenty million to one organization. That organization provided an integrated solution for all the hospital's needs. It took five years to get it installed and working, and no part of it worked particularly well. All the staff that might interact with it is also required to attend training sessions for the software. The individual departments have no say in the purchase, and a lot of them refuse to use it.
And t
VA system is public domain (Score:2)
The system created by the Veteran's Administration is public domain software, though it is called VistA, so it can be a bit confusing now. I work for in a department within a medical school and have thought about testing it out, though IIRC it uses Delphi for the database and was created using an obscure scripting/computing language called M. Still, it's used to link all VA hospitals and clinics, so a veteran can go to a clinic across the country and t
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The "obscure" language is MUMPS now called M and has been around since the early 1970's when it was written specifically for health care and is used throughout the health care industry as well as many major financial applications.
VistA does have some of it's front end written in Delphi. Much of it can be ported to be used as a we
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updated it to "VistA", which predated Microsoft Vista (wonder if Microsoft chose that name for a medical reason?).
VistA® / CPRS Demo Site:
http://www1.va.gov/CPRSdemo/ [va.gov]
The code:
http://www1.va.gov/CPRSdemo/page.cfm?pg=1 [va.gov]
http://www.innovations.va.gov/innovations/docs/InnovationsVistAFAQPublic.pdf [va.gov]
http://www.va.gov/VISTA_MONOGRAPH/index.asp [va.gov]
http://www.va.gov/vdl/ [va.gov] is the library.
http://www.va.g [va.gov]
VA system is a single payer designed system (Score:2)
That's the problem. It is built for a military hospital, not a real world hospital, and shows in all aspects of the system (not just it's severely limited billing module).
Obligatory MUMPS link... (Score:2)
I'm a doctor and I got burnt by a closed system. (Score:4, Interesting)
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.
Re:I'm a doctor and I got burnt by a closed system (Score:2)
1. The security is barely on the radar. Any office that can set up an EMR can do so securely. That's part of the setup costs.
2. There was an interesting case I heard about recently (I'm not sure if it happened in 2007): A cardiology office in one of the south-eastern states of the U.S. data-mined their patients to find out which ones would benefit from implantation of a defibrillator. (This is a fairly expensive procedure that is covered by ju
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What do you mean by "open format"? Do you mean the database file itself (i.e. MS SQL) or the manner in which the data is stored in the database (i.e. everything has a data-type of VARBINARY or something)?
LOL. I suppose this is progress, that someone is apparently incapable of realizing that data can be stored in anything other than a major DBMS product. Although I don't know what the OP was talking about, here are some other options: The data could be stored in:
A little knowledge is a dangerous thing (Score:1)
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My apologies, I missed that.
No idea. Perhaps he used a homegrown diagnosis/procedure coding system?
Open Standards != Open Records (Score:2)
The article seems to suggest that if open standards are used, all of your medical records will be wide open. That does not make any sense at all.
The openness of the standards has nothing to do with the openness of the records.
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So many reasons ... (Score:3, Insightful)
1) They are expensive for a small practice - think that a primary care docs office is rolling in cash? Think again. Most of them are barely scraping by, which is why your doc needs to see 30+ patients a day. Otherwise the rent doesn't get paid and he/she can't make payroll. If a new tool doesn't make the office more efficient, it can't be justified. Sound odd? Next time you visit your doc, ask him who determines how much he/she gets paid. Its not you, its not the market and its not actually the insurance companies. Its the federal government when they set payment guidelines for Medicare/Medicaid which the insurers follow. Free market my ass.
2) They are slower than paper - few docs can type as fast as they can dictate or write. Most of us can take notes on a piece of paper while interviewing a patient - no one I know can talk to a patient and type into a form.
3) Many are designed to maximize billing, not care - we get paid based on how many indicators of complex care we hit. How many "systems" asked about, how many organs examined etc etc - not by our time or skill. So in order to bill we have to document all of these. Some EMRs are designed to force the MDs to check many boxes for billing and audit purposes. Unpleasant and slow.
4) Many are slow and perform poorly - my hospital switched recently from a physician designed an written EMR from the 80s that was text/terminal based and blindingly fast, to a web-based system. The new system is slow, and doesn't really do much that the old system did. The difference was that the first system was built by MDs who ate their own dog-food, the second by teams of very smart, very committed programmers who don't practice medicine.
5) They are the camel's nose under the tent - my hospital based practice was recently instructed to begin doing "medication reconciliation" on all outpatients. That means at the start of the visit I have to type in all of a patient's medications into the EMR. Sounds fine for you, right? Now imagine your grandmother. As a sub-specialty consultant I see most of my patients once to twice a year and they are on 20+ medications, over the counters, vitamins and herbal supplements. It can take 6-7 minutes out of an already short 30 minute visit. Sure its great for safety, but it means we are running an additional 45 minutes late at the end of the day. Not so great for you if you have a late afternoon appointment.
There's only one REAL argument (Score:1)
Then there
Open standard - not Open access (Score:1)
The other 10% - like external exams and reports - need the network up and running and the interoperable database world. Backup could be on any encrypted cloud disk.
Come on guys this isn't rocket science, its human lives, "stupid".
Praetorian! (Score:1)
"The Net" with Sandra Bullock
A socially retarded software engineer cannot tolerate intrusion.
http://www.imdb.com/title/tt0113957/ [imdb.com]
She fought back!
EHR - trainwreck for your privacy (Score:2)
What is needed is an initial focus on the security of the systems, access rules defined, complete auditing of all actions
Open standards already exist (Score:2, Informative)
With these a PACS (Picture Archive Communication System) forms the "database" of data. The PACS is actually more work-flow based which then stores the actual data on some type of highly-reliable data storage system.
These two protocols make up the totality of your health care experience at a hospital. Your hospital certainly uses these two protocols, so wh
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I work for a medical company and our EMR schema takes a lot of work to design. To open it up would be to tell our competitors "hey, just use our schema and all the thought that went into it!" Not the best idea if you want to remain competitive. (Well, not unless open source is something that the customers start to demand.)
Also, opening it up means that our competitors (and customers) will want to write custom apps directly
This one is a crappy argument (Score:2)
The above is an argument for proprietary databases — they are harder to steal from. Well, harder for a layman. And a disclosure by an adverse-minded layman is what the vast majority of people need to fear. Unless you are a prominent politician or a businessmen, you need not fear a