More Problems With EHRs

My fourteen year old son had a sports physical yesterday.  At the end of the visit we were handed a sheaf of papers summarizing everything that had occurred.  We headed toward the lab for a blood draw, then drove home.  Finally, two hours after the appointment was over, I sat down to review the paperwork I’d received.  There it was:

EHR Problem

There are a few problems with this.  First, obviously, is that the information is wrong.  My son did not have his first menstrual period at age 13.

Second, poor programming permitted this error to occur.  When the patient is a male, it should not be possible to enter data in a “females only” section of the chart.  Either the entire section should be greyed-out, or selecting “male” in the gender field should generate an “N/A” entry in all female-only fields.  Worse, even for female patients, it should not be possible to enter any data in the second and third fields when the first question received a “no.”  This is incredibly sloppy programming.  If this is an example of the quality of work that’s gone into writing EHR software, it’s no wonder that it took an act of Congress to coerce physicians into purchasing this garbage.

After laughing at the typo, I checked the rest of the paperwork to make sure there weren’t any other surprises, then phoned our doctor’s office to request that they make the appropriate correction.  The receptionist was very nice, laughed with me, and promised to have the error fixed.

Problem:  at 5:30 our doctor phoned. The error can’t be fixed.  Once information is in an electronic chart, it can’t be changed.  What kind of numskull programmer doesn’t recognize the need for fallible humans to make corrections to typos?

Image getting a statement from your financial institution and finding that a decimal was in the wrong place —  that the check you wrote for $50 went through as $500.  Nobody would accept the bank saying, “Sorry, but once something is in the computer, it can’t be changed.”  Or what if your deposit was credited to another person’s account?  This happened to us once – fortunately my spouse keeps all deposit slips and checks them against the bank statement; it was relatively easy to resolve the problem because banks can make corrections to bad data.

It is possible to leave a trail showing that a correction was made: when, why, by whom, etc. The programming should then make it impossible for the old “bad” data to be copied and carried forward into future notes and communications.

In fact, the same programming would directly address misdiagnoses. Once a diagnosis is determined to be inaccurate and the true problem is discovered, it would not be difficult for a small addendum to appear throughout the chart whenever that misdiagnosis occurs, noting that on such-and-such a date, it was determined that the dx in question was more accurately replaced with a diagnosis of ___. The programming needs to ensure that the correct information, not the erroneous data, is what carries forward.

Electronic Health Records – a great idea in theory, but an abysmal failure in practice – have been inflicted on this country by the lawyers in DC who wrote the “Affordable” Care Act thinking that it’s appropriate for politicians to tell doctors how to do their jobs.  There are too many problems, from poor design, to bad programming, to the tendency to perpetuate inaccurate data.

All computer software need to be well-designed.  It needs to be tested and idiot-proofed.  Electronic health records are no different.  EHR software needs to acknowledge that fallible humans have a need to correct errors.  It’s true at the bank, and it’s even more true when people’s lives are at stake.

Early, Aggressive Treatment

Early, aggressive treatment is the standard of care for rheumatoid arthritis.  Thirty years ago, the standard was to use NSAIDs, only adding methotrexate or another DMARD after permanent damage had occurred.

We now realize that DMARDS modify the course of the disease.  They slow down progression.  They are supposed to be used as soon as possible so that the least amount of deformity takes place.

Why, then, are children still treated with NSAIDS?  I am fuming!  It took years for my daughter to even get a diagnosis.  When someone finally put a name to her joint pain, NSAIDs and exercise were prescribed.

Initially, that helped.  It wasn’t great, but when things are really bad, any improvement is nice.  For quite some time, though, it hasn’t been enough.  Last summer I expressed concern that my daughter was missing too many activities due to uncontrolled joint pain.  Her rheumatologist listened and blew me off, suggesting that she just needs to exercise more.

News flash:  at some point, the pain has to be controlled to make more vigorous exercises possible.

If one shoulder hurts, the doctor will do an exam, maybe order x-rays, diagnose tendonitis, and give a cortisone shot before sending you to physical therapy.  If one hip hurts, the doctor will do an exam, maybe order imaging, give a cortisone injection, and write a referral to physical therapy.  Same thing if it’s an elbow or a knee.  BUT for some reason, when my daughter has tendonitis and/or bursitis in multiple joints, she does not get expensive imaging (yay) or steroids or PT or a different med ( :( ).  She’s told to exercise and stick with ineffective NSAIDs.  They’ll treat tendonitis in a single joint, but when the problem is due to her immune system gone postal, she’s SOL.

This is affecting her schoolwork and her social life.  Do I give her an F in typing if she is in too much pain to be able to sit at a keyboard and position her shoulders/elbows properly so that she can complete her typing assignments?  Do I give her an F in science when her knees, hips, and back hurt too much for her to stand and perform experiments?  Does she just never do things with friends because she is in too much pain to get out of her chair?

This has gone on too long and is getting progressively worse.  Last weekend she was in tear because the pain, even after adding acetaminophen to her NSAID, was intolerable.

Yesterday I finally phoned the rheumatology nurse line and asked if there’s anything we can do to step up her treatment plan, or – at the least – do something temporary to relieve her pain so that she can get back to her exercises.

The nurse finally called back.  My daughter now has a referral to a pain clinic.  Are you kidding me??!!!  A pain clinic?!!!  She does not need counseling or pain medicine.  She already has an exercise plan – she’s in too much pain to do it.

Everything I’ve read says that the prognosis of enthesitis related arthritis is related to age of onset.  Maybe the prognosis would be better if the disease was treated more aggressively!  NSAIDs do not qualify as aggressive treatment.

Sulfasalazine is supposed to be very effective in treating the spondyloarthropathies.  Methotrexate is pretty scary to think about giving my sixteen year old, but it would be better than having her unable to function.  Even a quick steroid taper has potential.

I recognize that I have not been to medical school.  There are many factors that I might not be aware of or understand.  However, it would not be that difficult for the doctor to explain the indications for stepping up treatment.  If my daughter will be unable to function then she should quit dreaming of earning her DPT.

For the life of me, I do not understand why my daughter’s rheumatologist won’t try something else.