"Why don't these systems talk to each other?"

Another frequent question I get asked in my job is, "These systems are all plenty expensive - Why don't they talk to each other?"

What this is referring to, of course, is the common phenomenon that the EMR at one hospital may not seamlessly transfer a patient's record to another EMR down the street.

There are actually a few reasons why this is so, but one of the most interesting ones is a phenomenon called the "patient identifier problem."

Q: DIRK, WHAT EXACTLY IS THE "PATIENT IDENTIFIER PROBLEM"?

Here's what it boils down to : It's much harder to identify a human being than you might imagine.

Allow me to explain. (Names below are purely fictional, just for teaching purposes.) :)

So at first glance, it should be easy to identify a human being. After all, we have names, right? When we see our neighbor John mowing the lawn, riding his mower - His name is John - We recognize him - Yep, that's him. Easy, right?

Well the problem is what happens when we actually try to identify someone on paper - That is, have a record that we can match to an actual human being.

At first, we might try to label a chart "John's Chart". The problem with this approach is that there may be lots of Johns, so in a small town (even on a small street), you might have two "John's Charts".

So you might add the last name : "John Smith's Chart". This might work in a small town, but when you expand to collect charts for your whole state, or the whole country, you might find over 700 "John Smith's".

So names are generally a bad way to label a chart for a few reasons :

1. There might be over 700 "John Smiths" across the country - How will you know which chart is the right one to look for?
2. Your neighbor, John Smith, might register at Clinic A as "John Smith", at Clinic B as "Johnathan Smith", and at Clinic C as "Jon Smith". This could potentially make three records. How will you know which is the proper record to search for?
3. Names may also be misspelled by registration staff - If a "Karen" registers in a clinic, will the registration staff write "Karen", "Caryn", "Karin", or "Karyn"?
4. Ethnic names, over a large country, also may suffer from the poor understanding of the host country. How exactly does one spell Dimitry? Dimitri? Dimytri? Moroch? Morocz?

So one might try to straighten this out with some simple recipe - One I often hear first is, "Why not use the first three letters of the first name, first three letters of the last name, and the date of birth?"

The problem with this approach, again, is that someone might register with a different name in a different clinic. Is it going to be "JOHSMI01011970" (John) or "JONSMI01011970" (Jon)?

Then the suggestions usually continue...

Q : "Dirk, what about by the Medical Record Number?"

The medical record number for this patient at your hospital (123456) may not be the same as the medical record number for the office down the street (654321).

Local medical record numbers might work for a hospital, or a small regional group (if you have centralized registration), but they generally don't work across different healthcare systems.

Q : "Hmmm... Why not use the social security number to identify people?" 

The social security number suffers from a few problems too :

1. There is no check-digit in the social security number. A check-digit is a number (or series of numbers) that are mathematically linked to the other numbers, so you can figure out if the number has been falsified. The social security number was invented back in 1935, before things like "identity theft" were around. As a result, the social security number is probably one of the most abused identifiers, often used for fraud by criminals. 
2. The social security number is a 9 digit number - So in total, we should be able to issue about 999,999,999 of them, BUT... because of certain restrictions (e.g. no numbers that start with 666, no numbers with -13- in them, no numbers with all of the digits the same), there is really only a pool of about 820 million to draw from. Currently the U.S. population is about 350,000,000. Which sounds OK, except that we maintain that number by having some people die every year, and some new babies added every year. In total, about 620 million numbers have already been handed out, so we could potentially run out of social security numbers sometime around 2100. Yes, that will be some time from now, and hopefully we will be able to fix that before it happens - but in our current political climate, will the government ever be able to assign a personal identifier again?

It's funny - I've spoken to informatics people around the globe, and they usually ask me "Dirk, why are you guys in America having so much trouble getting a national health record? In our country it's very simple - Either :

• "...our national government maintains our national health record." 
• ... or ...
• "...our national government assigns a health identifier for all citizens."

Well, the problem is that we're Americans. Authors like George Orwell and Ayn Rand have left a significant impression on our national consciousness. We just don't like the idea of the government assigning a number to track all of our health information. In fact, in 1998 Congress forbade the HHS, by law through HIPAA, from creating a health information identifier - Despite many groups asking for an identifier, and an estimated $77 to $154 billion savings in healthcare that a national patient identifier could provide. And perhaps (just to be fair), this is for good reason - see this letter opposing government-issued medical identifiers and this document summarizing the potential abuses. (Please note : I'm not taking sides, just presenting both sides of the argument.) 

Q : "So Dirk, how does the VA (Veteran's Administration) do it? I heard they saved lots of money through their VISTA/CPRS medical record, and their record is a major source of data for reasearch."

The VA essentially has a national patient record because, well, most veterans have a different opinion. When you ask most vets, "Do you care if the government has a number to track you?", they say things like "No, the government has been keeping a file on me since the day I enlisted!" right before they rattle off their rank and military ID number from memory. In reality, the VA has also been using Social Security numbers, but I understand there is currently a movement underfoot to move away from those identifiers to another number - I'm not an expert on the VA architecture, but this might explain why they divide the VA record up into different VISN systems. (Any VA Informatics people reading this willing to help explain the architecture?)

In short - 

• The culture at the VA supports a nation-wide medical record number.
• The culture of private and teaching hospitals (the "rest of America") does not.

This is why, when I get asked :

Q : "Dirk - The VA has free EMR software - Written by the government, so it's public domain - Why don't private hospitals use it?"

I usually answer, "Private hospitals *could* use it, but because of these culture differences they probably wouldn't see the cost and efficiency benefits that the VA did."

(In reality, there are also other support reasons why a private hospital might not implement CPRS/Vista - But that might be changing some with cool open-source projects like OpenVISTA.)

Q : "So Dirk, is there any hope for a national EMR? Will patient data ever be truly portable?"

Well, currently there is the NHIN/Direct project (see http://www.directproject.org and http://wiki.directproject.org) which seeks to allow physicians to transmit patient data, securely, between different offices - But without a common patient identifier, this may not have the workflow some patients and most physicians ideally want. Still, it would allow a maximum of privacy and patient control, and it's at least a step in the right direction.

There are also a number of regional Health Information Exchanges currently in use, and new ones being built - But without a common patient identifier, nobody seems to be sure about how this is going to work on a bigger, national level.

So yes, if you're traveling from Texas to NYC for vacation - You had probably better bring your medication list and medical history written on a piece of paper, just in case you need medical care.

Finally - I think there is actually some hope for a solution to this that could fly politically in America.  I've tested the idea with both republicans and democrats and oddly, both seem to like it. It's called the voluntary patient identifier. Unfortunately, I think so far this effort suffers from poor understanding, poor marketing, and quite frankly, poor patient interest. 

But I think there is a way to change that - I'll describe it in my next post.

(Ooh - Cliffhanger ending!) :)

Always glad to share - Feel free to leave comments, thoughts, and questions! :)