Guest Blog: Open Source and Primary Care in the US by Timothy Cook

Tim Cook, a vocal proponent and leader of open source in the health care IT space and owner of possibly the most impressive list of achievements in the FOSS-meets-HIT space, managed to stumble across a post I made a while back about the National Health Information Network. Even though he was apparently having a much more interesting Christmas than I was, he took the time to drop me a note which led to the guest blog below. Thanks Tim!

Back in March 2007 Jaz-Michael King posted about open sourcing the National Health Information Network (NHIN). There are success stories regarding using open source as part of some trials being done with NHIN record locating such as the Mendocino HRE as well as others.

But, as Jaz pointed out in December 2007, Regional Health Information Organizations (RHIOs) are struggling more because of lack of "Information" as opposed to lack of funding. If they could get the information into the systems then the funding would take care of itself.

So the root problem lies in; why can't we collect the information? Virtually all primary care clinics have computerized billing systems. The problem is that billing information is not rich enough to really provide the content and context needed for longitudinal patient care.

The real solution is capturing information electronically at the point of care. That information can then be used for many purposes including driving the billing systems and decision support.

The reasons that US primary care clinics have not adopted electronic health/medical record applications is because of the economics of doing so. Just the licensing of these applications can run into the tens of thousands of dollars. There are several open source alternatives that carry no license fees. However, the real costs of implementation of these systems include so much more than just licensing. Books such as "Computerization and Going Paperless in Canadian Primary Care" (ISBN-13:978-1857756234) detail these processes and expenses. It can easily take up to 24 months to transition from paper to electronic medical records. This is expensive in terms of not only training but in temporary reduced efficiency.

But, even if a clinic forges ahead with an implementation and they are successfully converting from paper to electronic; who gains? In a 2004 View Point paper by the American College of Medical Informatics (J Am Med Inform Assoc. 2005;12:13–19. DOI 10.1197/jamia.M1669.) they identified some primary reasons for the failure of the health information technology market in the US. Two major ones are:

1) Misaligned incentives. Simply, the people being expected to pay for EHR systems are the ones gaining the smallest percentage of pay back. payors and employers have by far the most incentive to see EHRs implemented.

2) Lack of true interoperability standards. In order for payors and employers to gain their maximum benefits, the systems must be able to communicate semantically correct patient information using open standards. In order to be capable of communicating semantically correct information, they must first be able to STORE semantically correct information. I believe that this is a bigger problem than the health informatics community realizes.

Longitudinal patient information is arguably one of the most temporally and spatially complex information sets known. Certainly GIS and others are complex as well but the science of medicine and therefore healthcare is constantly changing creating a moving context. To understand how to treat a patient the healthcare provider needs to be able to understand what has worked as well as what hasn't worked in the context of what was known about the patient and the treatments available at any point in time. This creates an environment of very complex data relationships. If any one of those relationships are broken then the semantic context of the data is lost and now there is a loss of information. Data items need to be bundled and stored as a complete unit of understanding for them to constitute information. Once broken apart into separate data items they are much like Humpty Dumpty.

Open information exchange specifications have been proposed such as the Continuity of Care Document (CCD) but again it isn't really an electronic health record model.

The openEHR specifications ( http://www.openehr.org ) are an object-oriented information model based on over 15 years of research and implementation experience designed specifically as an electronic health record information model. The openEHR specifications provide an opportunity to avoid the Humpty Dumpty data fracture. Through the use of "two-level modeling", openEHR specs describe a solid reference model enhanced by archetypes that bundle data items into an contextual information packet. These information packets can be transported between systems without loss of semantic context. I believe that vendors, proprietary and open source, would do well to examine the openEHR information specifications for use as the basis of their systems.

Use of a common information model will open the door for payors and employers to see their benefits unfold as patient information can be exchanged maintaining its semantic context. I project that this will reduce healthcare costs, improve quality of care and improve patient
satisfaction in the processes of care.

Timothy Cook, MSc
Health Informatics Research & Development Services
LinkedIn Profile: http://www.linkedin.com/in/timothywaynecook
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I Am Deformed

I've been having some annoying shoulder and neck pain lately which I've been attributing to rugby and like all good Welsh rugby idiots, I've figured if I ignored it it would go away eventually. Ah well.

After a month of wincing I finally decided to see someone about it, but really didn't want to go the whole doctor/surgeon route. So I went to a chiropractor.

I will document my experience over the next few months, which I'll start here by talking about the first visit.

My first note on arrival was that it was pretty much like a doctor's office, girls behind the desk, a bunch of chairs, some magazines. Everything was more naturopathic though, the magazines were all granola types.

After my insurance card was inspected, I was taken to a back room with a massage table device and a computer. A tech came and ran two scanning devices up my spine, one for "nerve imbalance" and the other for "muscle problems".

As she scanned, a graph was being spat out onto the computer monitor, with varying amounts of red and green spiking away horizontally from my spine. She told me this was a significant amount of "nerve imbalance" which I asked what that meant.

She said it meant my nerves were imbalanced, which I politely told her I had understood as much... what did that *actually mean*?

She looked at me quizzically and replied no-one had ever asked her that before.

Anyhoo, the chiropractor came along and told me what was actually going on physiologically, and after a few pokes and prods declared I likely had a straight cervical spine as opposed to one that curves away from your head. He X-rayed me and said no, was wrong. In fact my spine curves in exactly the opposite way it's supposed to, it curves forward.

I took this as proof positive that I am in fact a lot more cro-magnon than most would believe.

So I am currently in therapy, I have had two cracky popping things done to me that have made me feel better, and I have a silly-looking device I have to lie down, strap my head into, and inflate. It sounds funner than it is, believe me.

I will collect up the bills and post them here when I have a few for review. For now, the chap has been extremely forthcoming with information and does not hesitate to answer any of my myriad questions.‎ Full story...

About Bleedin' Time

So it looks like the 29 BILLION dollars' worth of research funded by the NIH will finally be open access to the public that paid for it in the first place...

The Washington Post covers this nicely so I won't go into too much detail, but long story short, we pay taxes, government funds research, research gets published in journal, journal costs $500 a year if you want to read the results.‎ Full story...

Medical Myths

Cool little article from BMJ about common myths that persist, even in the doctor's office.

• People should drink at least eight glasses of water a day
  
• We use only 10% of our brains
  
• Hair and fingernails continue to grow after death
  
• Shaving hair causes it to grow back faster, darker, or coarser
  
• Reading in dim light ruins your eyesight
  
• Eating turkey makes people especially drowsy
  
• Mobile phones create considerable electromagnetic interference in hospitals.

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RHIOs Need Data Not Dollars

GovHealthIT reports on a Harvard study that finds that RHIOs across the USA are failing abysmally. Well duh. Regional Health Information Organisations can only function if and when they have regional health information to organise. Imagine building Google before the Web. Or Facebook before E-mail. That's what we're seeing happen now, and the feds STILL refuse to speak up.

Two systems that work that I think shine a light on how to build a national health network are the Internet and the credit card clearing system. Neither of these systems were written into law, neither came from new taxes, yet somehow they seem to work and sustain themselves.

The calls for funding RHIOs get louder and louder, yet these people HAVE NO DATA to share.

I have a few thoughts:

Incent adoption of electronic health records NOW. We don't need RHIOs, we need records.

Understand that successful implementation of EHRs will REDUCE REVENUE for those people implementing. REIMBURSE THEM.

If we build the data, the network will take care of itself.‎ Full story...