NEW @ THCB PRESS: Surviving Workplace Wellness. Spring 2014. Al Lewis and Vik Khanna. e-book edition. # INNOVATION: PCORI APP Challenge

Preface by e-Patient Dave: This is a story of bad data gone wild, wrong info that spreads. It starts with a story from the 1600s, which applies all too aptly to our EMR situation today, in which there are inadequate controls on data quality, and errors that leak can be impossible to contain.

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 They also had their print licenses withdrawn; the fine was directed to be used to for a new set of print typefonts and to oversee new quality control practices to prevent such a mistake from ever again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.

This posting was originally published on e-patient.net and is republished on THCB with permission of the author.

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57 Responses for “The Parable of the Wicked EMR”

  1. MD as HELL says:

    In general, a patient usually knows his or her own history. Compiling all your own records from all providers strikes me as unnecessary and not needed for care. It may be an exercise undertaken for another purpose.
    It would be extremely evident very soon that a rolling record from provider to provider would become so useless due to errors and perpetuated inaccuracy that any doctor would be negligent to rely on it. The doctor must start over and must verify everything that might be suspect.
    After five or ten years, a sick patient’s record could take a day to review. Medical care will grind to a halt. On the other hand, if it were limited to “just the facts”, it might help. Facts are surgeries, pathology reports, lab reports, images, diagnoses based on reliable and reproducible information. This would exclude most mental health diagnoses, all fibromyalgia, all vague aches and pains.
    Such an undertaking should be done as a pilot program with a real population, a single state such as Connecticutt (small enough but large enough). It would be easier for them to flee to neighboring states if needed to escape the monolith. If it worked it could evolve and propagate to other states. If it flopped, it could be undone without massive disruption of real medical care.

  2. rbar says:

    I wonder whether you exagerate these problems, for obvious reasons … or whether I just happen to practice in an area where things are not that bad (my own large MSG does a good job handing out chart copies, and I know that Mayo and most other area facilities do well). There are some offices/institutions that are slow or unreliable, I will admit that. The most straightforward approach to this would be to cite/fine those. But of course innovative solutions are great … I just don’t see the need, not to that extent (and some other problems if patients can create completely selective charts). But time will tell.

  3. Excellent topic.Thanks for commenting. Indeed, most of these points are not new. Unfortunately they seem to be forgotten by a lot of people in health care.

  4. David C. Kibbe, MD MBA says:

    Dear Commenters All: Claudio said something very important, in my opinion. He said:
    “The applications aren’t to blame — we’re seeing the consequences of junk data being exposed without review. It’s just a taste of the skeletons that may lie in the data closet. It’s also worrisome, because it may make hospitals reluctant to adopt the level of transparency that 21st century medical data requires.”
    I love this description! “junk data” and “skeletons in the data closet” Isn’t this the problem, that we are using data somewhat recklessly, without review, and in “the closet,” meaning out of sight?
    What Dave wants, what we all want as patients/consumers, is accuracy and currency of the data, and its review at proper intervals by our care providers.
    But it will take a lot of effort to get us there. How do we get there? is a legitimate question. Do we need new laws? Consumer pressure? An Obama-like campaign?
    Let’s do it!
    Regards, dCK

  5. WICKED EMR… HAHAHA….such a big mistake…… LOLz

  6. Deepak says:

    Buying EMR or EHR directly for the software manufacturers is frought with fault. You need an IT partner on your side. We at Informed Inc. are here to help. With our healthcare and IT specialists, we can help you navigate the EMR landscape to identify the right solution at the right price for you.
    We know how important is your practice for you and we ensure we keep that trust through the entire implementation process. Please visit us at http://www.informed-inc.net

  7. Manoj says:

    Security for EMR is a major concern. EMR solutions providers must adhere to strict guidelines. Doctors and practitioners must take this seriously and thoroughly investigate security of their data before implementing a solution. This is where value provides can help physicians.
    http://www.informed-inc.net

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