Stream: terminology
Topic: Where to define MedDRA based value sets?
Jean Duteau (Dec 21 2021 at 19:13):
I have a FHIR IG that has two value sets that use MedDRA terms. I have a ballot comment to not have the value sets be defined in my IG but I'm not sure that I have a choice. I can't define them in VSAC since VSAC doesn't have MedDRA as a code system (makes sense since it's not free). I also can't determine if I can define them in THO (via UTG) since MedDRA wouldn't be available there either. All of the FHIR value sets appear to take from FHIR code systems, so I can't see any examples of THO value sets that take from an external code system that wouldn't be defined in THO itself. Is this possible?
Rob Hausam (Dec 21 2021 at 21:00):
I think it should be possible to do that and define the value sets in THO (we can ask to be sure). But in the case where the code system content isn't available, I'm not sure how much benefit (if any) there would be over defining the value sets in your IG, as you've done.
Elliot Silver (Dec 21 2021 at 21:54):
@Jean Duteau Based on the fact you mention ballot, I'm guessing this is an HL7 IG. If you can publish the content in your IG, I can't imagine there would be a difference in terms of licensing to publish it on THO.
Jean Duteau (Dec 21 2021 at 22:05):
It wasn’t a licensing thing but the fact that the value set in THO would reference MedDRA codes that aren’t in THO
Jean Duteau (Dec 21 2021 at 22:06):
Having said that, our project team decided that there might be a licensing issue so we removed the codes from the value set and just gave it a text description.
Rob Hausam (Dec 21 2021 at 22:16):
@Jean Duteau We just discussed this on the UTG call (Marc can probably fill in further details). The main issue to guide whether it's better to have the value set published in THO rather than in the IG is, obviously, if others need to have or can make use of having access to the value set. If there is no content available in the code system or value set, then that becomes a considerably less compelling proposition for someone else to want to/need to use it. So, if you know of specific requests or needs (either current or anticipated) for others to be using the same value set (i.e. the same canonical url) then it's clearly best to go ahead and submit the UTG ticket and have it added there - even if the content isn't currently available (I think we agreed on the call that it is possible to do that with the current publishing process). Otherwise, I think it's up to you which way you prefer to do it (unless and until the situation with the code system content availability changes). That's my take.
Grahame Grieve (Dec 21 2021 at 22:33):
surely UTG already includes value sets based on code systems not available to the UTG infrastructure
Jean Duteau (Dec 22 2021 at 00:24):
You would think so but I couldn’t find any nonretired value sets - not that searching THO is an easy thing to do
Grahame Grieve (Dec 22 2021 at 04:54):
I'm open to suggestions for improving search. But it's a web thing - text is easy to search for; concepts are not
Robert McClure (Dec 22 2021 at 20:25):
The ability to make a value set that has a specific defined subset of codes from a code system that we cannot host (such as for code systems that are IP restricted) will always be an issue in any IP-compliant value set authoring tool. It is the nature of the beast. Your choices are:
- Build the value set and define the value set definition CLD but leave it to the implementors that have access to the code system to make the value set expansion on their own. This means you would make the value set in as complete a way possible (defining all the elements and use whatever "Compose" methods are appropriate (FHIR filters or RulesText for text-based definition) to define the content, but no content would be in the expansion. I suggest you do this in your own IG but I do think we should be able to accommodate this at THO via UTG. Let us know if you want to do this.
- Work with HTA/TSMG to see if we can work with ICH to get the code system into THO. I've not worked with those folks so don't know how crazy that suggestion is for MedDRA.
Lloyd McKenzie (Dec 22 2021 at 22:50):
Value sets should only be in UTG if there are clear rules around the maintenance of the value set such that we're fine with everyone using the value set being impacted by changes. Typically, that's not the case.
Last updated: Apr 12 2022 at 19:14 UTC
