Next anecdote about poorly managed medical data:
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.
Dave: Great, great post, as usual. Kate’s experience is an example of what I spoke to you about a while back, in which the hospital refused to let a patient see her own records, because they had been confused with another person’s, and, under HIPAA, viewing the co-mingled record would ipso facto involve viewing someone else’s records illegally and without authority to do so. So, mixing up a person’s identity is a cause for refusing access to one’s own records! There are actually a number of law cases in which this has occurred.
Doesn’t sound as though this happened to Kate, but it might have.
In any case, your conclusions are spot on.
David, I’ve told several (knowledgeable) people about the story you just mentioned, and most of them have said “That’s illegal.” (These were people who should know.) What’s up with that, do you know?
Are our privacy rules so convoluted and poorly managed that even the people in the business don’t know what’s what? (Regardless of which party’s right, that appears to be the case, because people in the business are taking each side.)
Amen!!! You are so right.
Reading about Kate’s and Dave’s experiences with EHRs confirms my belief that a wise patient will maintain their own personally managed back-up copy of their medical history and medication records, whether it’s in the form of a paper record like http://www.handirecords or in an electronic format on one’s phone or some other personally managed electronic record.
As a caregiver, I am responsible for tracking medical information for my mom, dad and myself. Without my own back-up copy, I couldn’t necessarily tell you if the hospital’s EHR on any of us was correct. I have too many things going on to remember it all.
A large part of this problem rests on an interesting question. Who owns the medical record? Providers have, with various levels of justification, always maintained that the medical record belongs to the organization that creates and maintains it. I can understand that. But, at the same time, no one has more at stake than the patient if that medical record is inaccurate, and (in most cases) no one is in a better position to spot errors than the patient or their responsible relatives. So the patient has to be seen as having rights, as well.
Yet many facilities act as if the last thing they want is for the patient to see their own chart.
To be fair in my comment, I will mention some powerful forces that drive that attitude:
Practitioners are increasingly faced with heavier schedules, to make up for reduced reimbursements, and they can’t take extra time to explain notes in the medical record. Patient CAN become much harder to manage after they misunderstand information in their medical chart. Medical records contain some of the most specialized knowledge available to mankind, and that knowledge often DOES require translation or interpretation to the uninitiated.
What we need is balance. How we achieve that is at the heart of the debate, and will depend on technology, patient education, a shift in understanding about who is responsible for the data and the decisions made from that data, and lots of time and patience.
I agree with Ann, the best defense is a good offense. I am managing my family’s healthcare along with my mother, who has recently been diagnosed with hypertension in an online version, HealthVault, which is just easier for me than paper. I wish I had access to all of my family’s records, but until I get to see them, I rely on what I can create for myself. I have seen a lot lately talking about access to your records, and I do wonder whose they really are? I am paying the doctor for a service, so would the record be technically considered a description of the service, sort of like what your repairman would hand you? Or because the doctor has added his professional insight to the record, does it become his? I don’t know. But I should at least be able to see them, right?