For those of you who weren’t at Health 2.0 Meets Ix to hear from the mouths of the four horsemen (Halamka, Sands, Zeiger & deBronkhart) here is Google’s Roni Zeiger’s version of what went wrong with the “incorrect data from BIDMC to Google Health” story and what they’re going to do to fix it.
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Good point, Nick, about how the “test” was designed. However, Dr. Halamka, the CIO at BIDMC, is an M.D., so I do not let him off the hook. One look at Dave’s record and any M.D. could tell it was useless data, for either the patient or any dr. trying to use it. Only if the “test” was performed by a computer technician (which would be a bad design in itself for this application), should this have passed the test.
In response to Bev’s comment about testing — it is quite likely that the application was tested and successfully passed those tests. Chances are the test was written to ensure that diagnosis codes were properly transmitted, etc. However, the challenge in testing this type of application is: how will a user interpret the data, and what actions might they attempt to perform based on the data? I don’t know all the details, but I can imagine that “user acceptance testing” for our friends at Google will be getting a lot more rigorous…
bev’s & francine’s posts concerning EHR accuracy are interesting & will be made more so when they explain how existing records will be checked to make them accurate. As is often the case there’s little practical way forward other than to use & deploy the inaccurate record & improve it with increased use.
Great analogy, David! Makes you wonder how the “e-Patient Dave” scandal will be viewed four hundred years from now….
As to legal cause of action, Google is covered rather well by its Terms of Service Agreement that all users must sign. You pretty much agree to use it at your own risk. There is probably no cause for action against the hospital either.
The only candidate for legal action is unfortunately the usual suspect: the doctor that relied on the Google data and harmed the patient. The argument would probably be that as a medical professional he should have known better.
As a user of Google Health, Bev I agree with you. There are two separate and interrelated issues here, fondly summarizable as “garbage in, garbage out.” First of all, hospitals and doctors must be incentivized to code the accurate diagnosis and not the one insurance will pay for (like the routine mammogram v. the screening mammogram). And then there needs to be quality control. After all, we have it on the web all over the place (“user name or password incorrect”), so we should have it in health care.
Before we spend all the stimulus money Obama has allotted to make our records electronic, let’s make them accurate.
I usually try not to be scathingly critical, but I am scratching my head that someone at either Google or BIDMC did not actually examine a transferred patient record from a patient with a complicated history, to see what it looked like, before they went live with this idea. This often underutilized procedure is known as TESTING THE SYSTEM. Why did it take e-patient Dave to bring this to light???!!!! I fear for the future of health IT if this is what emanates when smart people are involved.
While this is interesting and important — clinical diagnoses have “forever” been translated by clerks (“coders”) into ICD numeric codes — these are actually close to the clinical diagnosis, and thus do form useful clues for professionals who can have access to them, and are more accurate, in my experience, than patients’ own recollections.
We fool ourselves if we think any medical record other than the primary document is precise (and even that is subject of problems of left-right descrimination, mis-speaking (tongue-ohs?), omission of negatives by transcriptionists (e.g., hearing ‘un-‘ as ‘ahhh…’)
The most troublesome inaccuracies, in my experience, are with surgical pathology and the “medication list”. This is always only an indication — though a very useful one — of what the patient is actually taking. I can’t count how many times my office nurse has spent 20 minutes getting an accurate medication record, including sometimes a phone call to the patient’s pharmacy; followed by my reconfirming the important meds and schedule — then, at the end of the visit I’ll hand as always the printed med list (showing name and dose in one column, schedule in the middle column, and purpose in the third column), ask the patient to review it before leaving, only to hear, “Wait! this isn’t right!”)
Then there is the loss of information that occurs with successive iterations of the past medical history. For example,
“Excision of a Clark’s Level III malignant melanoma in June, 2006 at St. Elizabeth’s in Timbuktu” becomes “Melanoma 2006 at another hospital” then “skin cancer of some kind a few years ago” and then “probable basal Ca in the past.”
We also lose information about the nature of adverse medication reactions. Intolerances, in particular, transmogrify into allergy, and patients are then innocently denied helpful treatment.
So the use of billing ICD codes is annoying, but less problematic, in my experience, than other inaccuracies.
Another issue that’s seldom mentioned is downloading the entire haystack in non-searchable form, when only a few needles are clinically relevant. The normal human being may be incapable of finding the information, whether on paper or electronic, in the time available.
I wonder why they add a 2.0 to health.
The Parable of the Wicked EMR
It was a scandal. In 1631 two London printers published an edition of the bible that omitted “not” from the seventh commandment. [It should have said “Thou shalt not commit adultery,” but it didn’t.] The public outrage over what was dubbed the “Wicked Bible” was loud and immediate. King Charles I heard about it, and was incensed. This simple mistake by print compositors landed their employers in the Star Chamber before the infamous Bishop Laud, where they were tried, found guilty, and fined 300 pounds. They also had their print licenses withdrawn; the fine was directed to be used to for a new set of print typefonts and to oversee new quality control practices to prevent such a mistake from ever again occurring in the future.
The episode of the Wicked Bible has historical importance because it demonstrated how the new print technology allowed printers to create “standardized” errors, something impossible in the scribal era when all books were the product of hand copyists. Textual drift – the result of small copyist’s errors in single books, which were then repeated in the next copy, and so on – was no longer possible, replaced by the textual fixity of print type. If printing presses could greatly lower the costs of producing books, and make them available to whole new classes of people to read, they were also capable of mass producing errors!
Enter e-Patient Dave. As we all know by now, Dave asked to have his hospital’s electronic medical record system upload his health data to his Google Health account, only to find that the diagnoses transferred were claims data that were largely unintelligible and meaningless to Dave, and some of the problems listed were downright inaccurate or false.
Wicked EMR! How is it possible that that such mistakes could be made? Not exactly the Word of God, but most people trust that their health information is accurately recorded inside the EHR technology of the hospitals where they are cared for and treated.
Plus, since insurance billing records are transferred to the MIB, an insurance industry database that insurers use to check patients for pre-existing conditions, errors in billing records can have serious effects, as the Consumer Reports blog reported last August. A truly wicked consequence of a propagated error.
Hundreds of blog posts later and two articles in the Boston Globe, here are my takeaways from the Parable of the Wicked EMR:
* Hospitals must recognize that more and more of its customers will want their medical records in electronic format, and help filter and organize these data, rather than just “dump” them to the patient’s chosen PHR, in this case Google Health.
* Dave’s healthcare providers need to help keep the data and information available in terms that patients can understand, along with coded data, and be aware that reconciliation at discharge in CCR or CCD format will be valuable to them. This will help them check for errors (free quality control!) and empower them to be increasingly responsible for their medical information.
* And the PHR companies need to continue to help bridge the gaps that exist between health data in EHRs and IT systems, some of which is largely incomprehensible, and organized sets of information available in patient-understood terminology on the Web.
* Finally, as Dave is proving every day, the patients/consumers have to take some responsibility for feedback and additional commentary until we all get this right.
The good news in all of this is that so many people actually care about e-Patient Dave’s experience getting better. It’s lit up the blogosphere because it’s important. This isn’t about blame – it’s about improvement to the point that patients get accurate and up-to-date summary health information about themselves at every point in the health care system.
A few questions that we might want to answer before this is all over:
* How can it be that a doctor’s list of problems/diagnoses and those that the hospital uses are not the same? Is this an error, or is there upcoding and possibly abuse of the system going on?
* If Dave’s doctors had acted on the data sent from the hospital to Google that was incorrect, and Dave was harmed in some way, would he have a legal cause for action against the hospital? Against Google?
* If these billing data are inaccurate, wildly so in some cases, then why are we using them for analytics and quality research? For disease management?
* If Dave’s billing data in the hospital EHR/EMR system is actually data from someone else, ie. another patient, then is Dave prohibited from seeing his own chart due to HIPAA privacy rules?
* Isn’t it time for there to be a patient right to summary health data that is digital, up-to-date, and accurate?
We don’t have access to the same recourse King Charles had; we’re not likely to arrest and fine those who mismanaged the “sacred” data. But if you ask me, we ought to have the same sense of indignation, and the same commitment to hunt down and eradicate the Wicked EMR.
Kudos to all who are working this out!
Regards, DCK