Sunday, April 08, 2012

The Clinical Narrative - Seems It Is A Hot Topic. We Have Not Paid Enough Attention To The Issue.

The following appeared a little while ago.

Are EMRs Killing the Clinical Narrative?

Scott Mace, for HealthLeaders Media , March 20, 2012

Could your new electronic medical record system be missing vital information the old paper-based system captured?
Even the most seasoned technology champion has to stop and ask that question, if for no other reason than the new medical record looks very different than the old one. To put it in classroom terms, today's EMR is often multiple-choice, not essay.
But almost as long as there have been doctors, the preferred way for them to communicate has been through a narrative—a story.
EMRs may introduce gaps in that narrative, says Philip Resnik, professor of linguistics in the Institute for Advanced Computer Studies at the University of Maryland.
Since 1999, Resnik's been studying the limitations of entering clinical information into discrete fields and checkboxes in an EMR. At the recent South by Southwest conference, Resnik described the dilemma clinicians face: to embrace the EMR with all its limitations, or to push ahead for new technologies such as natural language processing that rarely see clinical use today.
Resnik illustrates the problem with a sample narrative of a woman complaining of shortness of breath. In a slide he highlights snippets that are easily entered into EMRs, such as symptoms and actions taken. But he also underscores much text that helps tell the story of the patient's encounter in the ER but doesn't readily map to fields in an EMR.
"The doctors in the ER were trying to figure out whether the shortness of breath in this woman was due exclusively to her failing heart, or was there a problem with pneumonia," Resnik says. "People who have pneumonia do not respond promptly to [BiPAP] treatment. But she responded promptly. This gave them information."
Resnik bets that few point-and-click EMRs have a check box or slider control for how quickly a patient responded to a treatment.
Text fields in EMRs can capture this information, but in a busy exam room, with doctors trying to point, click, and enter EMR data during the exam, while also trying to maintain eye contact with the patient, how much time will be left for text entry?
The dilemma compounds when you realize that any data entered in text fields will resist analysis. Database analysis works best with discrete numbers. So even if we get doctors to enter the portions of their narrative that don't fit in discrete data fields, we've lost the ability to really analyze that data.
Lots more here:
To go a little further have a look here:
This really is a wonderful example of just how hard knowing what is happening to you can be and how representing what is going on is just astonishingly hard.

Visualize This: An e-Patient’s Medical Life History

There is some recent thought that self-tracking or data gathering is “a manifestation of our profound self-absorption.” Sure, self-tracking is all about ‘me,’ (hence the word ‘self’) but there seems to be an undertone that people are motivated to track their data by vanity or narcissism. This may be true for some people, but there are others who are motivated by true medical necessity – diabetics needing to track their blood sugar, or people suffering from unexplained medical mysteries. I fall into the second group.
For the past 20 years I have had Myasthenia Gravis, an autoimmune disease that causes weakness. For the past 14 years I have been taking Prednisone, a corticosteriod, to suppress my immune system to help reduce my Myasthenia symptoms. Unfortunately prednisone causes a host of side effects. For the past 5 years I have been experiencing gastrointestinal problems (debilitating at times) and increased weakness. I have been to neurologists, a number of gastroenterologists, acupuncturists, and a few primary care doctors, and NONE of these folks were able to really explain what was happening to me or give me concrete advice for improving my condition.
As I was getting ready to see a new doctor, I realized that the best way to tell my story would be to create a medical “life story” timeline that reflected:
  • The course of my autoimmune disease
  • Severity of my gastrointestinal problems
  • Key moments in time when I started and stopped certain medications or took antibiotics
  • Any significant dietary changes
I sketched out the two timelines (autoimmune and gastrointestinal) separately, and then created them electronically using Adobe Illustrator. (I’m an interaction designer by day, so fortunately I had the skills/know-how to create a somewhat legible artifact.) I used a peach color to represent gastrointestinal wellness/symptoms, and a blue color for Myasthenia Gravis.
---- End Extract.
So here is real ‘personal control’ of health information that leaves the conceptual basis of the PCEHR simply in the dust. Same as the material discussed here does.
We are led by people who are barely alive and who somehow think it will all work out because they want it to.

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