Our Healthcare Data is Locked in an EMR Prison

EMR's have a few problems. Selecting and installing them is too often a multi-year disaster. Getting information from one of them to the other is supposed to be routine, but is in fact a rarity. And the data in them is too often incomplete, inconsistent and/or just plain wrong. How can we get our data out of EMR prison and free it to be fixed up and actually useful?

The position of the EMR prison wardens and guards is clear: you can pry your data from my cold, dead hands.

What we'd like

A personal EMR is the solution to many EMR problems, among them interoperability. If data in my own EMR, corrected and completed by me, were uploaded to a provider's EMR, all the data would be up to date with almost no labor.

What we'd like is to have our personal EMR app log into the provider's EMR, download the data, let us fix it and complete it, and then upload the corrected and completed results. Not too hard.

What we're up against

The great Lords who build and operate the grand and glorious EMR's have their own ideas about letting us dusty peons gain access to our own data. Put simply, they're against it. But they'd rather not say they're against it. In fact, supported by legions of government bureaucrats, they insist that our data is fully available to us. All we need to do is follow a few simple procedures, and it can be ours!

Oh, great! Maybe I am being too cynical here. Maybe there really is a way I can take my data out of prison for a walk in the wild.

I recently accompanied someone close to me for a procedure at what is now called Northwell Health, formerly various other names including North Shore-LIJ.

I got all sorts of documents from them in the course of the interaction, and went through them to find out how I could get my friend's information from the EMR. Here's the main document:

Getting the data

First and foremost, can I get my data? You betcha! It says so right in the very official document I was given:

Hooray! I can get a copy! Uh-oh, I hope this doesn't mean just a paper copy. Let's see:

Okay, I can get an electronic copy. So where's the API? Where does my app plug into the EMR? Let's see:

Oh, no!!!! In writing! Somehow I suspect they don't mean emails are fine. But at least after I go through all the nonsense I guess I get my data. Let's read further:

What do you mean "may deny access"??!! It's my data!! Wait. It gets worse.

Nice. I get a redacted version of my own stuff. Unless they just feel like giving me a summary. Like what, this? "You came in to the hospital. You were sick. You felt like crap. We worked hard. You felt better, and left." Like that? What can I do to actually get my data? Here's how:

Very comforting! Instead of an API, it's a nightmare, obviously intended so that no one actually ends up with their own data.

Correcting the data

Maybe they're better about correcting the data. I showed elsewhere how crappy the data tends to be, and how paper-reliant even places with fancy EMR's are. You'd think they'd want all the data they have to be correct and complete, so they can do Big Data and get the much-vaunted benefits of the tens-of-billions-of-dollars-worth of EMR's we've bought, right?

I'm tired, so I'm not going to drag this one out. Here's the deal with correcting EMR data:

In other words, NFW.

Bottom line

The conclusion is simple: my data, the data about me and my health, is imprisoned in an EMR. The prison guards say, sure, you can visit, any time. Just submit your request in writing in the proper way, and you'll get your data real quick. Maybe. What if my data is sick and needs healing? Forget it.

They say loud and clear that I have a "right" to my data. But it's clear that they'll do everything in their power to make sure that right is never exercised.