•  Recording of meeting approved by participants.

Conflicts of interest and agenda review

A revised version of the briefing note related to QI work being done on primary and metastatic neoplasms.  Comments from members have resulted in a revision of the original proposal. See attached breifing note.

Discussion:

Decision:

The current definition of the Occurrence attribute is:

"This attribute refers to the specific period of life during which a condition first presents. However, conditions may persist beyond the period of life when they first present."

In many cases, the presentation of a condition occurs after the period of life in which it is observed.  This is especially true when there is a continuum of time periods; where it can be determined that a disorder actually began prior to the time in which it is observed.  New additions to the 282032007 |Periods of life (qualifier value)| hierarchy to support maternal pregnancy and fetal development phases warrants a revision of the definition of this attribute.

A proposed new definition for the Occurrence attribute is:

"This attribute refers to the specific period of life determined to be the period of onset of a condition.  This may be prior to the actual initial observation and conditions may persist beyond the period of life when they first present."

This issue arose during a remodeling of Birth trauma, where it can be determined that the trauma occurred prior to or during delivery of the child, but is not necessarily noticed until after complete delivery.

Proposed to change the last words of the definition from "when they first present" to something representing when the condition actually started (is realized). 

4/12/2022: revised wording:

OCCURRENCE: The specific period of life determined, possible retrospectively, to be the period of onset of a condition, as opposed to the period when the condition first presents or is diagnosed.  The condition may persist beyond the period when it was first determined to have occurred. 

5/16/2022: revisions based on comments from EAG members.

OCCURRENCE: Denotes the period of life during which the onset of a finding or condition is determined to have occurred.  "Onset" may be determined based on the time of the diagnosis, time of symptom presentation, or other objective or subjective information that informs selection of period of life. Thus, the “period of life” may be fairly accurate (specific) or estimated (vague). A finding or condition may persist beyond the period of life in which it had its “onset”.

Decision:

A question from a member country on when to use "X (person)" vs. "X of subject (person)" has exposed issues with determination of equivalence in information models that either split the relationship from the condition vs. using a precoordinated Situation concept to represent the SUBJECT RELATIONSHIP CONTEXT.

3/15/2022 - Update

A report on the use of person concepts as values for the SUBJECT RELATIONSHIP CONTEXT attribute is located at:

https://docs.google.com/spreadsheets/d/1LTPSInpRC_HMPniQANM8NL86WCieSAttoPYDS_yxjno/edit#gid=1

• Are familial relationships Roles or Persons?
• Given "X of subject" is primarily used as the value for this attribute, should these concepts be moved out from the Person hierarchy into their own "value set"? 
• Is Person the correct hierarchy for these to be placed?  
• How do we handle "Fetus of subject" given the sensitivity of some members of having a (person) semantic tag? This is needed when procedures or conditions are performed/recorded in a fetal record as opposed to a maternal record.

Discussion:

"X of person" was introduced to support the SUBJECT_RELATIONSHIP_CONTEXT of Situations. 

Background - https://confluence.ihtsdotools.org/download/attachments/17039782/Subject%20relationship%20context%20values_EDC_20060127.doc?api=v2

The main distinction made in the reference paper is that between an "Entity" and the "Role" played by an Entity.  However, this distinction is not made within the person hierarchy, with << 444148008 |Person in family of subject (person)| primarily representing roles that Person entities play being in the same Person hierarchy. Since the 444148008 |Person in family of subject (person)| is primarily used as values for the SUBJECT RELATIONSHIP CONTEXT attribute, we can question why it is in the Person entity hierarchy.

A question raised by the reference provided is whether a well-established role (e.g. father) can also exist as an entity?  Can a father exist as a standalone entity without the establishment of a relationship to another entity?

We are not separating roles from entities in the current hierarchies.  Because these are classes and not instances, we are constrained in how we can represent them.  This is more challenging in the current context of changing family constructions.  Father/mother and other familial relationships need to be explicit in that what is being referred to is the hereditary/genetic relationship between the patient and the subject relationship context. Need to consider the social context in this as well.  Do we need to separate out biological from social familial structures?  

In general, there is a feeling that we need to represent both the genetic and social constructs of familial relationships.  The X of subject (person) concepts were developed to support a specific attribute and should they be separated out?  

Fetus of subject is another issue. Do we need to be more specific in the definition of the SUBJECT RELATIONSHIP CONTEXT so we define explicitly what type of relationship we are trying to represent.  Is this an entity-to-entity relationship or an entity to role relationship?  

A related question to fetus.  How do we distinguish between the mother and the fetus in some procedures and disorders?

This is an issue in mental health as well that crosses over the biological and social aspects of relationships.

Decision:

Background will be investigated.  The person hierarchy needs some review and rationalization.

Background document posted above.  Will review for next meeting.

Background

EAG approved the updated inactivation reasons and historical associations in September 2021 and these were implemented in the Authoring Platform in January/February 2022. An outstanding item at that time was the issue of how we deal with concepts that are potentially ambiguous but not all of the individual elements of the ambiguity could or should be provided with a replacement concept.

This item explores one potential solution to this issue.

Based on a request from a member country, we seek advice on the potential move of << 281694009 |Finding of at risk (finding)| from the Clinical Findings hierarchy to the Situation hierarchy.

Rationale:

1. "At risk" is an ambiguous term that could mean either "at low(er) or decreased risk" or "at high(er) or increased risk", although it commonly is used to represent "at increased risk"
2. Nearly all of the current "At risk (finding)" concepts are primitive and thus difficult to maintain and of limited analytical use
3. There are a limited number of "At risk (situation)" concepts that are all sufficiently defined using the FINDING CONTEXT = "At risk context (qualifier value)

At risk findings = 254 (5 sufficiently defined, but through multiple primitive parents)

At risk situation = 5

Given the rationale above, it is proposed to inactivate and replace the current finding concepts with new Situation concepts using the terming pattern "At increased risk of X (situation)" based on the change of meaning to be more explicit and the movement to the Situation hierarchy.

Questions:

• Should these concepts be simply moved and remodeled (retaining SCTID)?
• Should these concepts be inactivated and replaced (preferred but potential large impact on users)?
• If inactivated, which inactivation reason would be used given that the existing terms are ambiguous, but are most frequently used to represent only "increased risk".  It is not necessarily of benefit to add both increased and decreased risk concepts where the latter would not be of much clinical use except in a few cases.

Many of the at risk finding concepts do not have findings or disorders to use as ASSOCIATED FINDING values.

At risk is a disposition.  We have developed predispositions as findings for allergy.  This is a prototype of representation of risk.  What are the requirements for representation of risk.  Is further analysis for the use cases needed? 

There may be a difference between statements of risk that are determined ad hoc and those that are determined through the use of formal assessments.

Do we represent risk as a set of observables?  Propose that a set of modeling exercises to determine the best approach.  

Moving them would clarify the meaning and make them more explicit.  It would also allow for a "cleaning out" of risks of questionable value.  

This would only be the first step in looking at ways to represent risk moving forward.

Decision:

Consensus that this would be a good first step and would help to inform later needs for risk. Terms will be inactivated and replaced based on change of meaning.

Measurement Findings:

Proposed changes to FSNs

• Proposed changes to FSNs: Please read the attached Briefing before the meeting and if possible return your comments for discussion at the meeting.

So far, with limited input, there has been positive response to the proposal.  One area where there is an issue is where existing concepts that refer to "increased" are referencing a relative increase as opposed to an above or below reference range. 

Another concern...ambiguity based on the source of the component being measured.  E.g. increased albumin. There are a number of "agnostic" groupers (with regards to specimen) that would need to be addressed as to whether they are ambiguous or not. Should these be resolved at the same time as the remodeling and reterming or handled as a separate phase of the project.  

Consensus that the notion of "relative to last time (or time period)" should not be represented in the international release. There were some in favor of inactivating those that use "increased" or "decreased" as inherently ambiguous.    "Normal" in terms of substances/drug is also ambiguous based on the use case.  Given the many examples of how the terms can be interpreted leads the group to determine that these all need to be inactivated and replaced with more explicit.  The issue is that there is a problem with determining what the inactivation reason would be. Suggested to inactivate the entire hierarchy without replacement and create a new hierarchy with more explicit concepts.

Decision:

None