This post will complete (I hope!) the list of errors that I discovered in the billing data that forms part of my medical records. The original post is here.

As I said in the the previous post, “Let me make clear, I personally have only one agenda: to empower, equip and enable engaged patients to get control of, and be responsible for, their medical records. To me this is a fundamental step toward participatory medicine, in which patients play an active role in their own care, in partnership with their providers.”

Thanks to Dr. John Halamka, CIO of my hospital (Beth Israel Deaconess Medical Center), and to my primary physician Danny Sands for his generosity in spending hours digging through records to confirm what I’ve written here.

Again, my point here in opening up my medical records is to give e-patients an example of what can go wrong. Please do not punish Beth Israel Deaconess for their cooperation and transparency.

From everything I’ve heard, what you will read here is not unusual. Those of us who work in data know, this is a natural consequence of not having effective process controls on how data gets into systems. And that’s how our healthcare universe is today.

This is why you need to get your butt in gear and see what’s in your data.

(For those who want more details, the ICD-9 billing codes are listed here and the Wikipedia page about ICD codes is here. Our post on other medical data formats is here.)

Two abbreviations to explain:
NOS = Not Otherwise Specified, i.e. “Other”
NEC = Not Elsewhere Classified, i.e. “Other,” again :–)

Here are the additional oddities and errors we found in my billing data.

255.9 Adrenal Disorder N0S was entered 1/5/07, the day of my very first exploratory CT scan. At this point all we knew was that I had something in my lung – nothing about anything adrenal.

705.83 Hidradenitis, armpit or groin cysts, was entered 1/11/07, when I got the abdominal ultrasound where we first saw the tumors in my kidney. Hidradenitis can’t be diagnosed with any form of radiology, not to mention that the ultrasound only touched the belly.

424.2 Nonrheumatoid Tricuspid Valve Disease was entered 3/19/07, on a visit to get an infusion of Zometa, a drug to fight the bone metastasis in my femur. I don’t have valve disease; never did. (Besides, why would this be coded by orthopedics?)

529.0 Glossitis (inflamed/red/swollen tongue) was coded on 3/21/07, when I came in with a lump growing out of my tongue. I never had an inflamed/swollen tongue. However, there’s probably no separate code for “lump growing out of the tongue,” so the way they entered it into the record had to be wrong. For billing that’s fine; but if you read it as clinical reality, you get a false reading.

733.90 Bone & Cartilage Disease, NOS also appeared that day. No idea why this would appear during a clinic visit for a lump on my tongue.

V15.82 History Of Tobacco Use was coded while I was in the hospital having my leg repaired, after it broke from the cancer. (I’d quit smoking ten years earlier; strange time to enter that as a billing code.)

129 Intestinal Parasitism NOS (ringworm etc): I never had this, but it was coded on a visit where I was getting another infusion of Zometa. (3/26/07)

733.13 Pathological Fracture of Vertebrae, 8/6/07: Never had this either. This was coded during a follow-up visit to orthopedics, but it’s not a diagnosis they made. The code was repeated just a few weeks ago, on 3/30/09.

995.0, Anaphylactic Shock (severe allergic reaction), 7/16/07. This was the final week of the Interleukin treatment that saved my life. It did indeed cause my blood pressure to drop precipitously (a common side effect), but I did not have anaphylactic shock. Having this in my record could give a future physician important wrong information about allergies.

V10.83 History of skin cancer, NEC: Yes, in 1980 I had skin cancer. Not sure why it entered my record during my final week of Interleukin.

441.2 Thoracic Aortic Aneurysm (9/10/07) – I mentioned this in my original post, and now we have details: the radiology report for this CT scan does say the aorta measured 43x43mm, which is <1/8” larger than the normal limit of 40×40. Billing data cannot convey those details, so when “aneurysm” showed up in Google Health, it looked like something very different.

Three months later the radiologist’s report said “The heart, great vessels and pericardium are unremarkable,” but there was still a (different) billing code for aneurysm.

560.2 Volvulus Of Intestine appeared on that same scan. It’s a life-threatening kink in the colon, which I never had.

438.85 S/P CVA (Status=Post CVA, i.e, “patient had a stroke sometime in the past”) With Vertigo. This was entered when I went in to check out a dizziness episode. Vertigo yes, but stroke?? Never. Note: this is an example of how a similar-sounding code might be sufficient for billing but completely misleading if used as clinical history.

Again, don’t punish the transparent! Please don’t read this list as an indictment of the one hospital that has helped us understand this. From everything I’ve heard, this kind of folly or error is common just about everywhere.

So: what’s in your wallet?  To find out, ask your providers – all of them – for copies of your records. Ask for  your clinical data as well as your billing records. It’s the first step toward taking responsibility for your own medical information, and taking control of your health.

You can do it.