By DAVID KIBBE

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 They also had their print licenses withdrawn; the fine was directed to be used to for a new set of print typefonts and to oversee new quality control practices to prevent such a mistake from ever again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