Stream: Patient Care WG
Topic: Call tomorrow?
Jose Costa Teixeira (Jan 26 2022 at 18:15):
Is there a call tomorrow? Some WGs don't meet after the WGM, hence the question
Jose Costa Teixeira (Jan 26 2022 at 18:16):
There are a few requests from Belgium after a terminology meeting held recently
Jose Costa Teixeira (Jan 26 2022 at 18:17):
@Michelle (Moseman) Miller @Jay Lyle @Emma Jones ?
Michelle (Moseman) Miller (Jan 26 2022 at 18:20):
Yes, there will be a Thurs 5pm Eastern PC FHIR call tomorrow Jan 27
Michelle (Moseman) Miller (Jan 26 2022 at 18:21):
We didn't cancel it since we had an agenda topic planned to continue (that started prior to WGM) and we didn't want to lose our momentum.
Michelle (Moseman) Miller (Jan 26 2022 at 18:23):
Agenda includes J#34395 per https://confluence.hl7.org/display/PC/2022-01-27+Patient+Care+FHIR+Conference+Call
I suspect it will take a good chunk of our time. What is the terminology question?
Jose Costa Teixeira (Jan 26 2022 at 18:36):
https://jira.hl7.org/browse/FHIR-35879
Jose Costa Teixeira (Jan 26 2022 at 18:36):
I think there will be some more formal argumentation about this. I just translated the main part of the request as a placeholder
Jose Costa Teixeira (Jan 26 2022 at 18:38):
The request is basically to add non-allergic hypersensitivity to the AllergyIntolerance.type valueset & codesystem https://build.fhir.org/codesystem-allergy-intolerance-type.html
Jose Costa Teixeira (Jan 26 2022 at 18:39):
If there's interest in a first discussion before the rest of the argumentation comes up, I'd like to bring it up for consideration.
Jose Costa Teixeira (Jan 26 2022 at 18:41):
this link for background https://www.sciencedirect.com/science/article/abs/pii/S0091674904009303?via%3Dihub
Jose Costa Teixeira (Jan 26 2022 at 18:41):
and I was _today_ years old when I learned there was a World Allergy Association :)
Michelle (Moseman) Miller (Jan 26 2022 at 18:43):
Russ touched on a similar topic (definitions of allergy vs intolerance) during Wed Q1 of the last WGM (https://confluence.hl7.org/display/PC/2022+January+WGM+Patient+Care+Agenda+and+Minutes#id-2022JanuaryWGMPatientCareAgendaandMinutes-Q1-CIMI/AllergyIntolerancetopics/UpdateonCDEXIG). If we schedule time to discuss at an upcoming PC FHIR call, then I'd like to be sure that @Russell Leftwich can attend, too, or else add his comments to the J#35879
Russell Leftwich (Jan 27 2022 at 12:11):
@Jose Costa Teixeira I think this is a very valuable update. The international domain of allergy/immunology specialists, allergologists in some regions, have extensive descriptions of non-allergic hypersensitivity. There is a more constrained concept of "pseudo allergy", which is not a synonym but includes non-allergic hypersensitivity reactions that morphologically are difficult to distinguish. The standards world has had only the categories of allergy and intolerance, intolerance being by default everything that is not allergy. However, the term "allergy" is often used as if it is equivalent to allergy/intolerance. Most clinicians who are not specialists and certainly most who are not clinicians empirically define allergy as "something bad happened the last time I was exposed to that substance, and I think it is going to happen again if I am exposed to it again." And yes, there is a World Allergy Organization, of which I was a card carrying member when I was in clinical practice.
Rob Hausam (Jan 27 2022 at 16:59):
The question to answer is at what level can and should this be captured in AllergyIntolerance.type. What we have now may be too simplistic - but sometimes keeping things simple is best.
John Moehrke (Jan 27 2022 at 17:07):
also, the name of the resource is not the scope of the resource. The name of the resource is just the name. The scope, boundary, etc... is more important to the point
Russell Leftwich (Jan 28 2022 at 14:59):
@Jose Costa Teixeira @Rob Hausam @Jay Lyle @Michelle (Moseman) Miller The concept of the allergy list evolved 60 years ago when we did not understand the mechanism of an classical allergy reaction like anaphylaxis from penicillin and many of the drugs that now cause reactions that are mistaken for the same type of reaction did not exist. We have tried to differentiate that type of allergy (immediate hypersensitivity) form other reactions that individuals have by distinguishing two types of reaction and appropriating the term intolerance for those that someone believes are not an allergy. But every individual, patient or clinician, has their own definition of allergy which they work from. Jose's proposal to call the other reactions "non-allergic hypersensitivity" is at least mutually exclusive, which intolerance is not, since an allergic reaction however you define it is a form of intolerance. Non-allergic hypersensitivity is a term found in allergy texts and journals. But when allergy specialists (I am board certified in allergy and immunology) say "type of reaction" they are referring to the reaction at a cellular level, the mechanism of the reaction. They are consultants making a diagnosis, not creating an entry for an allergy list in a patient's record. When clinicians who are not specialists refer to the type of reaction, they are talking about the observation of the patient who is having a reaction. The morphology of the reaction. And they may refer to the reaction by a single prominent feature like rash, or wheezing, or giant swelling which does not distinguish between allergy and non-allergic. But it is all grouped under the category of allergy in the patient record and all that may be recorded is "rash". Elaine Ayres reported a few years ago that in the EHR of the NIH Clinical Center 29% of the allergy list entries said only "rash". Nothing else. I think an extension that captures known details about the reaction type (by anyones definition) would be a significant step in the right direction. The allergy list (Allergy/Intolerance Resource) is one of the greatest patient safety issues in clinical documentation that exists. Several recent studies by allergy researchers have shown that when patients with penicillin on their allergy list (the most common single entry) are tested and challenged with penicillin, they have NO reaction whatsoever. Yet CPOE systems are prohibiting them from being prescribed penicillin and other antibiotics that it is presumed to cross react with. And I will state the obvious: you can't cross react with something you don't react to. Fixing this problem starts with fixing the way we record the information.
Lloyd McKenzie (Jan 28 2022 at 15:03):
The resource needs to reflect the data that systems have and that providers collect - not what we might which they had or collected. It certainly should allow for capturing data in a best practice form, but it can't require best practice capture or representation unless best practice is already almost universal for both current and legacy data.
Jose Costa Teixeira (Jan 28 2022 at 15:41):
@Lloyd McKenzie indeed, we want to allow the common use cases where the GP just says, at best, whether it's an allergy or intolerance, but without preventing an allergologist from capturing the actual physiological mechanism.
Jose Costa Teixeira (Jan 28 2022 at 15:43):
At this moment, we can't because the allergy.type is only Allergy or Intolerance - which is what we can expect GPs to use (if at all).
But it its a required binding, so a specialist cannot say "no, this is not an allergy, this is a non-allergic hypersensitivity".
Jose Costa Teixeira (Jan 28 2022 at 15:44):
The options discussed were:
- having an extensible binding instead of required
- leaving as is, adding an extension for the detailedAllergyType.
Lloyd McKenzie (Jan 28 2022 at 15:45):
My leaning would be the latter. The detailed codes would still require you to send the high-level codes.
Jose Costa Teixeira (Jan 28 2022 at 15:50):
IIRC, one problem with that is that the detailed code may not be a detail of the high-level code
Jose Costa Teixeira (Jan 28 2022 at 15:50):
if type is allergy and then a detailedAllergyType is added with "non-allergic hypersensitivity" that is inconsistent
Jose Costa Teixeira (Jan 28 2022 at 15:51):
my understanding of the request is that non-allergic hypersensitivity is a top level type (but it is not commonly used) - i may be wrong on this
Lloyd McKenzie (Jan 28 2022 at 15:52):
The base codes divide the world into "Allergy" and "Intolerance" where the latter is everything that isn't an allergy.
John Moehrke (Jan 28 2022 at 16:15):
much of the discussion is about the reaction to the substance. That is covered quite detailed in the model already in the .reaction. We should not be trying to summarize the 0..* .reaction into one code at the root.
Michelle (Moseman) Miller (Jan 28 2022 at 18:48):
For community awareness, Patient Care discussed this issue yesterday (with minutes captured as J#35879 comments). Patient Care was leaning towards recommending an extension, but we postponed formal voting to allow Jose time to socialize the recommendation with the requestor.
Jose Costa Teixeira (Jan 28 2022 at 22:11):
John Moehrke said:
much of the discussion is about the reaction to the substance. That is covered quite detailed in the model already in the .reaction. We should not be trying to summarize the 0..* .reaction into one code at the root.
@John Moehrke I don't think it is about the reaction. It is about the underlying mechanism that causes the allergyintolerance
Last updated: Apr 12 2022 at 19:14 UTC
