Dr. Google

You don’t have to read medblogs for long to learn that doctors do not appreciate it when patients research symptoms on the internet, then show up for an appointment with printouts.  Irritating the person who’s supposed to be helping us isn’t a good idea, so it makes sense to not take printouts to appointments.

That doesn’t mean patients can’t read reliable websites (Up-to-Date and Mayo Clinic are good places to start).  It just means that we ought not tell the doctor how to do his/her job.  It goes over much better if we don’t provide a diagnosis; patients provide symptoms and let the doctor come up with a diagnosis.  At least that’s what the medblogs say.

But what if the doctor’s diagnosis is wrong?

I’ve written before about the red sores that my rheumatologist and family physician thought might be psoriasis, but my dermatologist diagnosed as nummular dermatitis.  Those &#%$ spots show up if I miss one of my cimzia/mtx injections, and take a couple months to go away — unless I dig into my stash of prednisone, in which case they are gone in a couple weeks.  It’s obviously something related to the RA, but what?

Well, recently I googled another symptom (completely unrelated, I thought) that has plagued me for well over a year.  I find it bothersome, but not something I’d dream of making an appointment about. It certainly would never come up in the course of conversation at the doctor’s office.  However, in reading the differential diagnosis for that symptom, up popped vasculitis.  Really?  Others with RA have mentioned vasculitis, but I didn’t know much about it, so started reading.  The articles include photographs of red sores, mainly on the legs, that look very much like what my dermatologist said is something completely different. Reading about vasculitis is frightening, so I hope that’s not what this is.  But I need to know.

At my next appointment, I think I will ask if it’s possible that those red blotches all over my skin could be vasculitis instead of nummular dermatitis. The trick is finding out without annoying my doctors.

Endurance

Perturbed, frustrated, aggravated, irritated, upset, disturbed, annoyed, bothered, discouraged, disheartened, dispirited, downcast, dejected…  I need a bigger thesaurus.

When I left rheumy #1 for rheumy #2, I was clear about what I wanted:

• a doctor with whom I had good rapport
• a doctor in private practice, not owned by a hospital
• a doctor who saw patients without shuffling them aside to a PA

For a few years things were going well.  Unfortunately, about a year ago my doctor’s practice sold out.

Once they were owned by a hospital, things changed.  First thing to go was the excellent front office staff.  They were moved elsewhere within the system and replaced by lemon-suckers who just seem to be going through the motions.  Next my doctor’s MA (who always managed to process prescription refills within one day) disappeared; it now takes five days to approve refills and there’s a different MA every time I’m there.

To add insult to injury, the hospital brought in PAs.  Instead of seeing my private MD, I now see a hospital-employed PA.  The PA might be a nice person, might be competent after learning to do joint exams without causing pain, might be a lot of things. What the PA is not is the doctor with whom I established a relationship.  I feel betrayed.

Now the office is calling to move my appointment.  It seems that the hospital system has decided to open another clinic at another one of their hospitals.  My choice is to drive an extra 30 minutes or move my appointment to a different day.

I want out, but there doesn’t seem to be any point in finding a new doctor right now, since whoever I find could eventually sell out, leaving me right back in the same position.  Instead, I will show up for appointments as rarely as possible so that my prescription refills will be approved.  My youngest child is twelve; in six years he’ll head to college, and four years after that he should graduate.  That means I just have to deal with this ten more years before we can retire and move away.  If I can get away with follow-up visits every six months, that means I only have to go in twenty more times.  By then, I expect the medical profession to have undergone significant changes, and finding a new rheumy will likely be a completely different situation than it is now.

Twenty might sound like a lot, but I remember how many appointments I had the first few years after I was diagnosed. Twenty is nothing.  Although I was unhappy about things when I started this post, I actually feel better now.  I can endure twenty visits.

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:

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?

Imagine 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.