- Here’s the thing, we are having to create custom, “standard” concepts to represent all of the things/ideas/datum that do not have a standard representation from a standard vocabulary. My latest example is pain scores. We have ~650 unique representations for pain in our source. Our customers want all that data to study who has pain, are people being asked about their pain, what is their pain score, how are they treated, how effective is the treatment, and so on. Some of these map to standard concepts ( 0-10 pain score, pain duration, pain characteristics) and others don’t (pain intervention, response to relief measures, different pain scales). So, I have taken the liberty to create custom, standard concepts
. These are concepts that would otherwise be mapped to concept_id = 0. I have also created hierarchies in the Concept Ancestor table for these now standard concepts to make life easier for the query writers. One concept and all its descendants or 650 individual concepts? And that 650 is an increasing number. If these things had a representation from a widely accepted vocabulary, I would bring it to the OHDSI vocabulary folks, but they don’t. Pain is all over the news and the literature, but lacks standardization. However, that doesn’t stop the researchers from wanting to research it or the QA/QI folks from wanting to know what’s happening in our house.
2 This also keeps me awake at night. I am looking forward to a solution that doesn’t involve me remapping codes every time a vocabulary is refreshed.