To some patients, EHR is a non-issue


It is easy to remove one’s self from what is important as we trade metaphorical tomatoes about what is wrong with EHR, what may happen regarding reform, and why the N-HIN is DOA.  Debating healthcare IT on the internet is an esoteric and antiseptic conversation, one with few if any catastrophic implications to anyone other than the person trying to sell a used, hundred million dollar EHR on eBay.

We write about the fact that it is supposed to do something to benefit the patient.  Is there a more sterile word than patient?  Whether we use patient or patients, we keep it faceless, nameless, and ubiquitous.  They do not have to be real for us to accomplish our task; in fact, I think we do our best work as long as we keep them at arm’s length.

We calculate ROIs for EHR around people who exist to us only by their patient IDs.

What if these hominoid avatars turned out to be real people?  What if indeed?

Two weeks ago I learned of a real patient; a friend, thirty-seven, mother of three.  Lots of tests.  They call itmyelodysplastic syndromes, MDS—MDS sounds more polite.  One would think that because it has its own acronym that might infer good news.  It does not.

The thing I like best about Google is knowing that if an answer exists to a query, I can find it.  I may have to vary the syntax a few times, but sooner or later I will find that for which I am looking.  The converse can be quite disquieting, especially if you happen to enter a phrase like, ‘survival rates for MDS.’  After a few tries I realized that the reason I was not getting any hits to my query had nothing to do with poor syntax.  It had everything to do with a lack of survivors.

Last Christmas—rather strange title for a blog.  In this instance the title has nothing to do with anything religious.  It is simply a line in the sand, a statement with a high degree of probability.  Unfortunately, “Last Christmas” does not have the same meaning as the phrase, ‘this past Christmas.’

She has had thirty-eight Christmases.  Apparently, MDS is able to alter simple mathematical series.  If presented with the numerical series 1, 2, 3…37, 38, 39, and if we were asked to supply the next number, we would all offer the wrong answer—40.  In her case there may be no next number; the series will likely end with 39.  MDS math.

Then there are the three children, each one of them in the same grade as my three children.  They will be learning a different version of MDS math.  All the numerical series in their lives will reset and begin again with the value of one.  First Christmas since mom died.  First birthday since mom died.  Every life event will be dated based on its relationship to an awful life-ending event.

It will be their B.C and A.D.

EHR probably has very little value when you break it down to the level of an individual patient.  Stalin said something like, “one death is a tragedy, and a thousand deaths is a statistic.”  While it is unlikely that he was discussing patient outcomes, the import is the same.

Rule One: There are some awful diseases that will kill people.

Rule Two: Doctors are not allowed to change Rule One.

I guess it goes to show us that as we debated things that we view as being crucial components of whatever lies under the catch-all phrase of healthcare, when it comes down to someone you know who you know is probably not going to get better, they do not seem very important.

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