Commentary on 10 Years of Crohn’s Disease

The infographic is a work in progress. It’s a history, a case-study, a critic, a protest, and an attempt at a more holistic health record. 

The first graphic element is a list of symptoms. The subject of symptoms is disected into four parts. There’s probably a best generalization for each case so the point is to account for more than just the blatant. Symptoms should be a holistic thought process and not a list of issues western medicine knows how to cure. In my experience a physician has a giant and unacknowledged blind spot when assessing a patient. Comparison is impossible if there’s no baseline or prior observations. I’m not advocating a vast array of quantitative measures but more of an acknowledgement of the unknown and unattainable information. Filling out a “History of Present Illness” leaves a lot to be desired. Any implication, especially a diagnosis, should be met with an air of modesty. Acknowledge the blind spot.

The pie chart and list of my specific misdiagnoses go together. Consider a patient has shown up to an E.R. and been diagnosed with gastroenteritis twice in the last 6 months. What’s the probability gastroenteritis is really the culprit? What’s the probability of chronic illness? Which ones? If data isn’t collected then diagnosis errors can’t be studied. If diagnoses errors were studied it’s possible to ascribe a probability that a proposed diagnosis is wrong. What’s the pattern of misdiagnoses for which diseases? You can get a sense of this pattern for Crohn’s disease by reading the pie chart and reading my list. If the data were available and studied then before a physician diagnosis a patient they could check the probability of their diagnosis being wrong and get a list of other possibilities. Study the mistakes.

My first set of “Patient Discharge Instructions” after being diagnosed almost killed me. I had no idea how serious my disease was. I had no idea of the side effects of the drugs. The graphic I’ve created lists the side effects and placed them below the medication. It should be a law. But more importantly it should be common courtesy. A basic thoughfulness. Basic.

The bar chart graphic has two inserts, one for White Blood Cells and the other for Red Blood Cells. There’s another one just above the Quality of Life line chart, too, for weight. These little graphics are called sparklines. In all the lab tests I’ve had the results are published in isolation. It’s one sheet of paper with a column of numbers. Why not have a colum of sparklines? This makes a patient’s history easily to see. In order to make these little sparklines I had to sift through all my records and put my white blood cell, red blood cell, and weight results in a spreadsheet, plot them with a statistical computing language called R and the export the image to inkscape to make it look nicer. That’s an obsurd exercise to attempt just to look at a history of a common, repeated set of measurements. Numeric comparison shouldn’t involve flipping through pages.

Another “History of Present Illness”. The juicy part is highlighted in red. It turns out I probably didn’t have a history of steroid psychosis – I had a reaction to either the combination of Flagyl, Levaquin, Prednisone, and Pentasa, or a reaction to just one of them. I have no idea and neither does anyone else. After reviewing the list of side effects I’d guess Levaquin is a more likely single culprit than prednisone. However, I was told quite a few times, by healthcare professionals, I had a reaction to just the prednisone. So this is what I passed along to a new set of physicians. I was unaware of the potential mistake and they didn’t quesiton me. What results is irresponsible absurdity.

The timeseries of “Number of Drugs” and the general idea of visualizing your medical history is something I’ve wrtten about in the past:

It was also kindly picked up by Zina Moukheiber who’s a contributor at Forbes:

It’s nice to see a timeseries comparison of the costs right below the timeseries of “Number of Drugs”. In my case-study about $245,715 would’ve been saved if surgery would’ve been done proactively instead of delayed with drugs until I was really sick again.

There’s more to be said…

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Posted in A Crohn's Disease Story, DIY Electronic Health Record, e-Patient Community Research, Rants.

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