Amen!

Just had an incident where my SS# was attached to a different patient’s name in the electronic med record. And the health facility will not tell me where the error occured, or how long someone else’s name was linked to my ss# and my medical record. Discovered accidentally when the lead attendant called me by the wrong name…. The hospital ethics person states only that they have taken care of it and counseled the individual involved!

Then try reviewing your own EMR. They act like you are neurotic even though the reason is that your record had been mixed up with another person…duh!

Lots of errors/lots of privacy issues.

This is a new comment that appeared Wednesday night on my April 1 post about moving my data from my hospital’s system to Google Health. It’s from Kate Bosch, a Pacific Northwest resident who knew nothing about my story; she ran into her own mess and decided to see what she could learn. Good ol’ Google Blog Search brought her here.

The front page Boston Globe article about my adventure focused on the newly emerging doubts about our data. (Aptly, it was titled Electronic Health Records Raise Doubts.) There are at least two aspects to that doubt.

The article talked about billing data, and how it’s a poor “proxy” (in engineering terms) for clinical reality. (When you can’t find real data for something, it’s sometimes valid to use an available substitute, which is referred to as a proxy.)

But a deeper issue in my original post, much harder to change, is that no system will produce good results by itself: tools must be used properly. Buying a new hedge trimmer won’t guarantee gorgeous hedges, and among all the people you know who own a computer, I bet some get better results than others.

More importantly, when it comes to putting data into a multi-user system, you will not get reliable data unless there are well controlled processes for how data gets into the system. That means teaching people to do things in a particular way. And in an established profession, that usually means changing people’s work habits. And that takes time.

This is not rocket science, and it’s not unique to medicine. When I worked in the newspaper systems business, as that industry computerized, I saw at close range that changing an industry’s work habits can take a full generation. (And I mean a generation of people, not generation of systems.)

Think about that. Because we’re talking about how well others have been managing your medical data. Are you ready to take responsibility?

(Mind you, this doesn’t mean they’re “bad people.” It’s not trivial to design and stick to a good clean process. I know; I do that stuff in my day job. My point isn’t that the people are evil or anything, it’s that we are misguided if we assume our data is probably correct; we should check it out. Another set of eyes never hurts, eh?)

In my original post I wrote “I suspect processes for data integrity in healthcare are largely absent, by ordinary business standards.” This suspicion was validated by the Information Quality Trainwrecks blog, a blog where data professionals talk about how to avoid such things. Reviewing the story, they said “problems that have been documented in the information quality literature for over a decade are at the root of an embarassing information quality trainwreck.”

What to do? You and I must take control of our own data, because the industry may take twenty years to get there. Kate nailed it in a subsequent email:

the deeper I question, the more of a mess it seems…In my estimation the EMR will only work if patients have full access to ALL their EMR and can catch mistakes as they happen. Also security and access should ideally rest with the patients wishes not the medical or  insurance facility…

A complete turnaround in medical staff thinking  will be necessary though & I don’t think this will come easily  judging on my own experience & how I was treated when I requested to review the EMR’s (something they claimed no-one had ever asked to do before).

Welcome, Kate. Have a seat – we got work to do.

• As my hospital’s CIO John Halamka posted Monday, we had a concall Wednesday night. He, Roni Zeiger of Google, my physician Danny Sands and I spoke for an hour about this entire broad topic.
          It was candid, clear and constructive, though I must say there were some things that had to be said several different times. :–) In the end, I believe the right decision was made: the hospital was decided that “billing data … is unreliable for clinical history, and it was a mistake” to send it to Google Health. They will no longer do that.
          Congratulations and thanks to John for being open and hearing what the world was saying!  As Microsoft’s Sean Nolan asked earlier in the week, “how many other medical institutions out there display this kind of transparency? Kudos are deserved here.”
• Sean is chief architect for Microsoft HealthVault.  He wrote a great post “This just in: sharing health data is hard.” (Anyone who works with data transfers will get the “Wow, whoda thunk it??” joke.) He superbly captured my state of mind Monday and Tuesday, watching the media swirl that arose around the Boston Globe article: “People are having a grand time drawing conclusions from all from this, mostly trying to decide ‘who sucks’ — is it Google, or BIDMC, or the insurance companies, or lousy doctors, or all PHRs?” Kudos to the astute John Moore of Chilmark Research for his post, which steered me to Sean’s.
• Sean’s post also describes how HealthVault first imports data into a sort of “holding pen” where you can pick through it and decide what’s sane, etc., before moving it into the real health record. That sounds interesting.

EVERYONE, LISTEN UP:  I DID NOT JUST SAY HEALTHVAULT IS BETTER!  I haven’t even tried it yet.  There are many personal health record systems out there, and I have no intention of doing a comparative review of them all, much less declaring a winner. I am not freakin’ Consumers Union (though I am a member) with a staff of hundreds, I’m just one patient doing this as an EVER so stimulating hobby, doing what YOU should do, which is get your fingers into YOUR data.

Speaking of which, my doctor very generously combed through all of my data in PatientSite, every shred of it, looking to see what could be traced to its origin and what could not.  Sometime soon I’ll be writing about what he found.  It was really interesting to me.

I had to deal with a bunch of arcane abbreviations but that’s not difficult – it was easier than some instruction booklets I’ve seen.  (You can do it too.)  I learned a lot, and we found a fair amount of other insanity – like an armpit cyst condition (hidradenitis) that was supposedly diagnosed during an abdominal ultrasound.  Magic!

I hope to post about all that this weekend. And I hope you (yes YOU, the person in YOUR underwear, if you’re wearing any) will contact your doctor and ask to see the whole megillah so YOU can take responsibility.

See, if we’re going to do this Participatory Medicine thing, in which patients play an active role in their care, we can’t just sit back and hope “the other guy” is doing their part perfectly. Be an e-patient: empowered, equipped, engaged and enabled.

Thanks again to Roni and John, two MDs who listened, heard, and responded. Let this be a model for the new world we’re creating: collaborative, participatory healthcare. And thanks especially to Danny Sands, one of Tom Ferguson’s original e-patient doctors, without whose assistance I wouldn’t have been able to write most of this story. If knowledge is power, Danny’s an empowering guy.