You own all the data about yourself, right? It's your blood pressure, your date of birth and your test results, after all.
Forget about owning your data -- just try to get your hands on it! You may think you own it, but the sad fact is that you don't possess it! (Remembering hearing about how possession is nine tenths of the law? It applies here in spades.)
Health systems like to appear to be great folks who really care about you. These days, they all talk about how great their patient information portal (or whatever) is. Hah. Just try to use it!
I've talked about how essential it is to have a personal EMR. I've sarcastically described a big break-through in EMR interchange with details from a personal example. And most recently why portability is essential for the EMR.
I've just had another MRI and want to get my hands on it, so I can see the details. So I went to the hospital system website, and found right on the first page that they offer a patient portal that lets you get your information. Great! Here's what they say:
I took the next step and immediately ran into a bit of a problem:
Hmmm. I wonder which of these my doctor uses? And which one the MRI will be under?
After lots more work, I finally got to the right portal that had my stuff. I dove right in. I found my list of test results:
Hmmm, something is wrong here. There's got to be more than that! And what's that second item, the path report?
The path report, somehow dated both 11/23/2016 and 1/06/2017 is actually a copy of a report that was done at my first hospital, Mount Sinai, shortly after the biopsy procedure on Feb 21, 2014:
Bad data!
The first item is the most recent MRI I had done at Northwell. When you read the report:
You find that Northwell has a prior MRI they did dated 9/14/2016, and two earlier "outside examinations" dated 9/24/15 and 1/22/2015, in other words, MRI's done at some other hospital they choose not to name. But they had those MRI's in their system! They just chose not to show them to me.
Even worse, they admit that they performed a prior MRI themselves on 9/14/2016, and somehow it isn't made available to me, though it was in the system and available to the person who wrote this report less than a month ago.
They've thrown away or (more likely) withheld from me, either maliciously or incompetently or some combination, a report they did and two reports sent to them by Mount Sinai, helped in part by the miraculous digital system I described here.
Well, at least I should be able to go to the Mount Sinai portal and get the two missing MRI's, right? Let's see. Here is the top of the Mount Sinai patient portal test results page:
Score: one out of two. The MRI from 1/22/2015 is available, but Mount Sinai has decided I don't deserve to have the latest one, 9/24/2015. The reason is clear. That is the very MRI that was transferred to Northwell by the amazing digital process I described. When I removed the MRI from Mount Sinai on the DVD, I guess it was no longer there, right? That's how computer data works, right, when you take it from someplace it's no longer in the original place? How can it be???
Just in case, I decided to put in a request to the portal to supply the missing information. I was constructive, polite and provided the facts. Here was the cheerful, non-helpful response:
In other words, not my problem. As though the providers had anything to do with what information in the EMR makes it into the patient portal.
The only possible explanation for all this madness is that the hospitals involved are using some cheap new software written by a bunch of hacks. They can't possibly be using any of the most famous, widely used, expensive enterprise software systems, can they?
Let's see. Here's what you see at Northwell:
And here's what you see at Mount Sinai:
Oops. Two of the premier, widely used, non-cheap vendors. Each of whom is committed to modern, state-of-the-art EMR's with rich portals to enable patients to access their own data. Except on days that end in "y." Or when it's too hot or too cold outside. Or something.
Oh, I know! Their backs must be against the wall, humping to get all those wonderful features into their EMR's so that doctors can spend even more time staring at screens instead of being bothered by patient contact. They must be stretched so thin, they just can't afford to get the work done, and all my sarcasm is just nasty and uninformed!
Let's see. Here's AllScripts:
Lack of money is not the issue at Allscripts. Epic is privately held, so there's no way of knowing their profitability, but by every indication, they're doing just fine.
I guess it all comes down to the simple fact of who owns the data: possession being 9/10's of the law, the fact that they have it means that we patients can have what we fantasize to be our own data when we are able to pry it out of their cold, dead hands.