Imagine my surprise when I learned recently that I have Cystic Fibrosis.
Most people get that diagnosis after extensive tests when they are children. Their doctor is the one to deliver the news. In my case, it was an EHR. (And, no I don’t have that fatal disease, though electronic records indicated so.)
Here’s the back story: I wanted an EHR for my own convenience and in the event of a serious injury or illness – especially since I travel outside the US and am allergic to a medication.
Someone suggested I start with the EHR used by my insurer. I did, only to abandon it hours later, for two reasons:
- First, it listed medication allergies, but not mine (!) and did not allow me to enter it as an “other” category. Given it’s a serious allergy and reactions are potentially life-threatening, that limitation made the EHR disappointing (at best), seriously flawed (at worst) and not at all useful for me.
- Second, in order to record events like surgeries, it required more information than I could remember. The specific day, month and year of certain procedures was required before it would not allow the entry. For example, the surgery to repair the facial fractures I sustained during training for the Olympics is certainly memorable. (My sport was karate. Trust me, being kicked in the head is memorable.) I know it happened in the summer of 1972 and recall the name of hospital where the surgery was done and the surgical group who did it, but I can’t remember the name of the exact surgeon or the exact day and month. This meant ‘guessing and fudging’ about names and dates in order to enter any information at all.
A strategist at heart, I wondered about the future. If the record would be used in an ER at some point in the future, how did I say that parts were right and parts were not? Didn’t it defeat the purpose to say it was a useful record but that important information was missing and some of the information was fabricated?
Though I abandoned the record, my insurer has not. It’s populated with information about tests and visits; I’m notified with “push” emails each time. I rarely checked those emails, until recently. In a rare “free” moment, one arrived and I looked at it. That’s when I saw additional, historical information dating back more than a decade. There it was: the incorrectly recorded 1997 diagnosis of Cystic Fibrosis. No amount of tracking could discover how it happened, though it appears to be the diagnosis code associated with routine lab tests ordered by my primary care physician.
And then it happened again. Another “push” email arrived and this time, a recent routine annual eye exam carried the diagnosis of Open Angle Glaucoma. Keeping my cool, I called the office, “Did he forget to tell me something?” The doctor called right back, joking and reassuring me that it was a coding error and no, I did not have the condition. “Don’t worry,” he said, “It happens all the time.”
Apparently, it does! Because it happened again! I had occasion to check the EHR of the clinical group I see. It’s on a different platform, meaning now I have two different EHRs. They don’t match, by the way. In the latter, medications were listed that have never been prescribed, recommendations were made (e.g., eat less meat) that don’t apply (I’ve been a vegetarian for 42 years) and on a number of occasions my gender was wrong.
It’s taken a while, but at least both sets of records are now correct. Like the monthly credit-status reports I get, I’ll be more vigilant to ensure the EHRs I have are correct. One day, they might be used to make decisions about me, so they’d better be right.
- For all my friends and readers: take the time to check your records. Find out how many you have; be sure they’re accurate.
- For those in business of developing and using EHRs: efficiency and convenience is important, but accuracy is even more so. Years ago, the head of Merck’s manufacturing operation gave me a tour of the high-speed vaccine filling line. I was in awe. He, however, urged caution, saying, “Sometimes there’s a glitch, you see, and the sound of glass vials crashing at fifty times the speed of our old filling line … well, it’s not pretty. When things get efficient, they’ve got to be precise and correct.”
So it is with efficient, “high speed,” checklist-enabled, easily replicable EHRs: Find in your record what I found in mine and you’ll cringe, too.