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jessica hekman.Continuing my updates on what’s going on from the research team at Darwin’s Ark. This week, Dr. Kate Megquier and I attended a workshop about making a standardized ontology of medical terminology – basically, finding ways of describing relationships like “lymphoma is a kind of cancer” and “B-cell lymphoma is a kind of lymphoma” and “doxorubicin is a treatment for cancer” and “Addison’s disease and hypocortisolism are two names for the same disease.”
Figuring this stuff out is essential for our next steps in expanding Darwin’s Dogs to a place where we can take in veterinary medical data about dogs (and hopefully other species in the future). If we just have plain text boxes for you folks to type in the diseases your dogs have, well, that’s a recipe for disaster (see my previous posts about plain text boxes for typing in ages). A single disease can have multiple names and multiple spellings and and and…
It was a really interesting conference! There are folks out there who are really passionate about this stuff, and now Kate and I have met them and are starting to wrap our heads around what tools are available to us. It’s not at all an easy problem, but we are really hopeful that we’ll find a workable solution so we can start broadening Darwin’s Dogs to studying medical problems as well as behavior.
That workshop sounds really fascinating. My late mother had a very rare lysosomal metabolic disorder, and while she didn’t expect every medical professional she might encounter to be highly knowledgeable about her condition, still it was obviously important background info, so she had to develop multiple ways of introducing the subject, so that she could basically cycle through different terminologies until she hit on one that triggered recognition with whoever she was talking to. Perhaps today’s digitized medical records have alleviated that problem considerably(?) so that now the problem is more relaying the proper terminology to the patients, but in those days, for some diseases at least, the confusion flowed both ways.
Jennifer – I think you might be surprised at how much of a problem this still is! Researchers are tackling the problem of terminology standards, but very much in advance of clinicians. I suspect your mother would have similar issues today with communicating with many doctors. But at least the standards are getting in place. Maybe eventually they will trickle down to be useful at the patient level.
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