Record, supposition or SWAG

rec·ord
noun, ˈrekər/
a thing constituting a piece of evidence about the past, especially an account of an act or occurrence kept in writing or some other permanent form 

sup·po·si·tion
noun, səpəˈziSHən/
an uncertain belief 

SWAG
acronym, swag
scientific wild ass guess

As many of you know, I had to get a copy of my medical record when I went to Mayo at the end of 2013 for my second opinion.  And, as many of you might presume, I spent some time reading it.  Granted, the Ohio State University Medical Center has a pretty handy patient portal online.  It shows all my past appointments with basic information about the visit, past test results with handy graphing option (nerd alert!) and the ability to request medication refills and send messages to my providers.  I've learned that key info can be buried within appointment summaries...like the results of an ultrasound or my bone marrow biopsy.  I've mined that thing like a prospector in the Klondike Gold Rush.

One thing the online portal doesn't contain that the medical record does is the physician's progress notes.  According the the Wikipedia definition, "They are the repository of medical facts and clinical thinking, and are intended to be a concise vehicle of communication about a patient’s condition to those who access the health record."  There's that word record that I defined above.  Reading some of the progress notes in my health record, there are some suppositions and swags in there.

During my stem cell transplant, I developed a pretty common heart arrhythmia called Long QT syndrome.  It was pretty minor but was noted in my record.  What was also noted was that this was "most likely due to cardiac involvement from amyloidosis."  NO!  None of the tests (echocardiogram, cardiac MRI) showed cardiac involvement from amyloidosis.  There are many medications that can cause this arrhythmia and the opinion of those in the know...my oncologist and her team...is that it was due to medication.  The fact that it is now resolved seems to support that.  But some well intentioned practitioner supposed or SWAGed that since this patient has amyloidosis and it is known to effect the heart therefore this arrhythmia must be due to cardiac involvement from amyloidosis.

Reading through the progress notes from my primary care physician while she was looking for a diagnosis also shows some suppositions and SWAGs.  When I came in with the edema in my legs she noted that it could not be due to chronic kidney disease or congestive heart failure, the two primary causes of unexplained extremity edema.  What "evidence" did she have to support this?  None...she never game me a urinalysis or an EKG.  The record said there was no blood in my urine.  How did she know that?  She asked me.  No tests to confirm...no evidence...just supposition or SWAG based only on what could be seen, not what was proven.

She diagnosed me with fatty liver even though that is primarily due to obesity or alcoholism.  We know the obesity option is out and she never talked to me or Al about whether I had a drinking problem.  But it was a convenient supposition that explained away some of the symptoms with a somewhat benign, or at least not urgent, condition.  When I asked Dr. Levin about how he went about diagnosing a hematologic condition when he's a gastroenterologist, he said, "The fatty liver diagnosis just didn't make sense."

Thankfully, Dr. Levin recognized the supposition or SWAG and did not build his diagnostic approach on her perspective.  I'm glad he didn't fall victim to the problem of confirmation bias -- once a finding is recorded, human nature seeks to confirm rather than refute it.  It's hard for an unsupported and inaccurate supposition or SWAG to be forgotten.  And, early on in my diagnostic process, it seems like a lot of diagnoses were "thrown against the wall to see what sticks."  Knowing that confirmation bias exists, it seems like it would help for practitioners to share the evidence that supports their statements and the level of certainty they have in the statement so others don't try to build on something that's a pretty shaky foundation.

No, this isn't another rant about my delayed diagnosis.  But it is a rant about the evidentiary standard that exists to record information in a patient's health record.  Although I'm not sure if you can rant about something that doesn't seem to exist.  Back to the definition of a progress note, I see periods short on facts and clinical thinking, and heavy on unsupported guesses.

As I look at my medical record, there's no way for a practitioner to link what appears to be a suspected diagnosis with the evidence that backs up the statement and/or the practitioners level of surety that the statement is accurate, ie is it a record (evidence), supposition (uncertain belief) or SWAG (just a wild ass guess)?  In the grand scheme it may seem minor but I hear so many horror stories of Amyloidosis patients who go years before being diagnosed.  I know how frustrated I was with my four month process.  I often wonder about the impact that medical record as information dumping ground has on introducing confusion or interfering with the clarity that's needed with a disease as difficult to diagnose as this.

I spoke at the INFORMS Business Analytics and Operations Research Converence in late March and Tom Davenport, de facto king of business analytics, spoke about the power of unstructured data in the world of Analytics 3.0 and the increasing role of data in medical decision making.  He quoted the CEO of Novartis as saying that informatics is just as important as basic biology and chemistry in the development of new drugs.  Davenport went on to say that "50% of data in an electronic medical record is unstructured physician notes."  Looking at my record, it worries me to think that this unstructured data would be used for evidence-based decision making since so much of the physician notes in my record aren't really based on evidence. 

It's too bad that anyone with access to record a progress note can enter something that has been definitively diagnosed or something that is just a supposition and, to my untrained eye, there is no clear way to tell which is which.

I'm guessing labels of record, supposition or SWAG are out of the question.