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Patient-Reported Drugs and Conditions

I think for condition_era, you’d include it into the observation_period, but it is tricky for drug_era. For drugs, unless the information from PGHD can give us an accurate duration, I don’t think it should be included. Obviously, there are exceptions and if we believe a dataset his reliable and granular enough, then it should be included in the observation table, but I don’t see that happening.

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Thank you @cukarthik. @Christian_Reich help us finish up this ticket. What should we do in terms of eras for patient reported drugs/conditions.

There was an earlier question from @Christian_Reich on whether we need any additional patient reported types. We just found that we have a need for a patient reported procedure. Can we get a concept added to the Procedure Type vocabulary?

@sblyman Can’t you use 581412 Procedure Recorded from a Survey for now? The underlying meaning is the same: it’s used when a patient reports a history of procedure.

Thanks for the suggestion @aostropolets. We’ll go ahead and use that concept for now. Longer term, it would be nice to have something more in line with what other domains provide for general patient reported events.

Will add, @sblyman. Actually, we are supposed to overhaul all of them and potentially make them domain-independent. That’s a THEMIS job that’s still open. So, you will just have “Patent reported”, irrespective of what table it is in. Let’s see if this will work.

Hi @ericaVoss - sorry to revive an old thread but I’m hoping to gain some clarification on this. The FAQ’s link in this thread appears to have been replaced by https://ohdsi.github.io/CommonDataModel/ but I don’t see a corresponding FAQ item for this there – doing some digging around I can see the conventions include some details on this (e.g. the DRUG_EXPOSURE user guide) but the associated ETL Conventions for DRUG_TYPE_CONCEPT_ID has a link to Athena that doesn’t include a query term.

I’m wondering - what’s the best resource for conventions and approaches for handling patient reported data that falls into domains like drugs and conditions?

Thanks in advance!
Will

@wtroddy

Tagging @clairblacketer, she’ll have the OFFICIAL answer . . . . .

We’ve updated a lot of our documentation in the time since the post was written. However this specific point doesn’t seem to be in the conventions. Here is where I would expect to see it:
https://ohdsi.github.io/CommonDataModel/dataModelConventions.html#Data_Model_Conventions

Now that being said, I think this recommendation still holds true - with the exception that the TYPE concepts have also updated. Here is the list of valid types:
https://athena.ohdsi.org/search-terms/terms?domain=Type+Concept&standardConcept=Standard&page=1&pageSize=15&query=

So I’ll update the original text:
RECOMMENDATION
Patient reported data recommendation should land in the appropriate domain table (e.g. if a patient reports they had lymphoma it should land in the CONDITION_OCCURRENCE table. These data should be strongly typed so that it easily known which records are patient reported. Use type 32865-"Patient Self-Report" to identify these records.

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@wtroddy I agree with @ericaVoss’s assessment. Patient reported data should land in the proper domain as specified by the Standard Concept you assign it. For example, if a patient reports a history of hodgkin’s lymphoma, you could either assign concept 43021273 for “History of Hodgkin’s Lymphoma” or concept 35610328 for “B-cell Hodgkin Lymphoma”. Concept #1 would go to the OBSERVATION table while Concept #2 would go to the CONDITION table based on domain. In both cases I would do as Erica suggests and assign a type concept representing the fact that it was patient reported.

Clair

All Of Us data do not follow this convention (btw). Their conditions reported by patients (in patient facing CRFs) DO NOT make it into condition_occurrence table. (at least that is our impression from researching this). @Craig_Mayer

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