How being a patient/caregiver changed my perspective on implementing medical computing systems

Lawrence Fagan LMFagan731@gmail.com

Abstract

I have been a teacher and researcher in medical informatics for the last 40 years. Over the last few years, I’ve had the opportunity to look at the type of informatics systems that we built during those four decades from the perspective of a patient and caregiver [1]. This presentation highlights several examples of how the patient point of view changes the requirements for implementing medical computing systems.

In performing oncology informatics research, we strictly encoded the ranges used in guidelines that determine how to reduce chemotherapy dosages for ongoing side effects of the treatments. For example, a platelet count of 75,000-100,000 may be associated with a decreased drug dosage of 20%. We’ve known for some time that when strict cutoffs are used that it will lead to discontinuities at the edge of the ranges. This became clear to me when my platelet count was calculated as 98,000 and I didn’t feel that a dose attenuation was warranted. The guideline and standard practice didn’t call for a repeat test, but I knew that the variability of the platelet test probably exceeded the 2,000 cell count difference between my lab value and the top of the range. This kind of scenario suggests a more flexible encoding of the information is needed than the way that we encoded the guidelines.

Nothing is more exciting to an implementer as the “go-live” of a major electronic health record. But nothing is more nerve racking to a caregiver that is helping out a patient whose surgery is scheduled for the first business day of a “go-live” event. As someone trained in informatics, you know that the system will have limitations since all possible scenarios can’t be anticipated. But which problem scenarios will happen, and what to do about them is not well studied. Perhaps the best you can do is to ask the question “If the computer system is not working correctly, how would you proceed to get around the problem?”

As a patient and caregiver you ask different questions and look at the implementation issues with a different perspective. This talk describes how designers can start to take the patient/caregiver perspective into account.

[1] https://scholar.google.com/citations?user=hqIxlu4AAAAJ&hl=en
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