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Meeting url: https://join.freeconferencecall.com/vocab

Date

Attendees



Goals

  • Planning for Ballot
  • Confirm Documented Gender or Sex Identity
  • Begin discussion on Sex Phenotype context

Discussion items

TimeItemWhoNotes
15mBallot timing/planningRob M
  • May 2020 Ballot NIB deadline is March 1 2020. Initial content due March 15
  • Sept 2020 ballot NIB July 5, content July 19

Discussed and agreed that while May may be possible, the target to get more complete examples and approach will be Sept ballot.

We need to reach out to other groups, like NCPDP, to confirm alignment. SCRIPT 2017071 is supposed to be implemented in 2020 and may have two sex identities, sex at birth, identified sex?

 15m Confirm Documented Gender or Sex Identity context definition. Specific example contexts TBD

 See Gender Harmony Context Definitions and 2019-10-21 Gender Harmony Meeting Agenda and Notes

Group agrees with approach. Definition here needs work.


30mBegin work on Sex phenotype / Sex for Clinical Use definition

RH: Values likely Male, Female, and then many other which essentially means "Look for clinical observations or orders to understand sex-related considerations."

CT: Sex for clinical use is derived from other data (Gender Identity, Sexual Identity, etc.). If there is any mismatch, then the Unknown code is used and manual review is required. If the provider knows something that i not in the system, ideally there is a place in the system for them to document the information. 

RH: Enough history is not always present for a good derivation

RM: Confirms that both CT and RH beleive Sex for Clinical Use can be derived, and if not, then manual intervention is required. Hearing how this is derived, moves us away from "Sex Phenotype" as a context definition name. 

CM: Do we need both Sex for Clinical Use AND Phenotypic observation to be a separate class?

RH: Not comfortable with both, as it duplciates observations and diagnosis. 

CT: Perhaps its more we provide guidance on looking somehwere else (hormone medication? go look at the med list. There is no special class of clinical observations, so you should loook at observations, diagnositc reports)

RH: Agreed, indciates pHysician should go look at the other information.

RH: Values could be Male, Female, Non-Binary - where non-binary doens't fit into Male or Female pattern, thus you must look elsewhere (Medications, observations, lab etc...).



Action items

2 Comments

  1. Regarding NCPDP content :

    • The 2017071 version doesn't add any new sex/gender fields.
    • A DERF was passed last November (2018) to add preferred name.
    • Non-binary was added a gender code last May (2019).
    • Conversations have been happening about adding sex assigned at birth, but it isn't in the standard yet.

    I am still planning to follow up with NCPDP about future plans.  The NCPDP staff liason for the gender transition task group is Teresa Strickland (tstrickland@ncpdp.org)

  2. Regarding definition for Sex for Clinical Use, if I followed discussion correctly this is more something derived based on other sex/gender (or related) observations as opposed to a self-reported concept. So, in a clinical context the clinician would not be asking the patient for this specific observation nor basing it on any single source, but rather using multiple sources - probably some self-reported, (e.g., Gender Identity) or taken from a specific source (e.g., a Documented Sex or Gender Identity), and others observed via clinical examination or otherwise. 

    If that's truly the intent, it feels like the definition needs to clearly state it (if I misinterpreted the discussion, please correct me). It would also be helpful to provide specific examples of what would be expected to be used to derive the Sex for Clinical Use, although I believe we said we did not want to pursue defining any specific value set.

    Thoughts?