Gender Harmony Project

Standards Harmonization Concerns

Updated: 06/27/2019

  1. Is our current spreadsheet accurate and valid in layout?
    1. Consider if PHINVADS caused for double representations in citing Value Set Code and Code System Name?
    2. Consider what from Implementations and SDO uses listings are sources and what are Code Systems ?
  2. How will LOINC data be incorporated in doc?
    1. Consider that PHINVADS also drew some of these value sets already.

 

  1. In terms of “context” for the value sets, how do we define that? What is a good way to define that? What place, what situation, what people are asked this, why are they asked this, how can this be quantified?

 

  1. Can “permanence of values” be defined? How is time measured? How should this be measured? Nominal or Interval?

 

  1. What is the original intention vs. what is actually being measured of the value sets for “clinical sex and gender identity” values? How do we find out? How do we standardize this?

 

  1. How can we change Source and Notes sections to make more concise? How do we go from here?

 

  1. Consider OMOP Athena view source terminology: under “Vocab”, would that be Code System Name or is Gender in this case just a generic fill-in for lack of Code System Name? See Image 2

Image 2, Athena

  1. Suggestion: some of these sources link to old data and old terminology before being updated. Should any original data be cited in a separate sheet to show comparison, or longitudinal data, to most up to date data? Consider the dates of published data: should there be a cutoff?
    1. Consider an example: There are many Administrative Gender value sets in different versions published on HL7’s site. Is it notable to address previous versions of defined values in a separate sheet for longitudinal purposes?
    2. Also interesting note, the 2010 Census used “Gender” and “Sex” interchangeably, compared to the 2020 Census , which consistently uses the term “Sex”, though does not ask anything about “Gender”. Is this also notable? See Image 3

Image 3, 2010 United States Census

  1. Consider if we are to include veterinary concept names and codes or not in the data? Consider the existing Gender Harmony Goals : should it be specified what kind of organisms (Humans, mammals, etc) we are attempting to define in sex and gender? See Images 4 and 5
    1. Note that HL7 Administrative Gender data posted includes veterinary concept names and codes, and consider if we should distinguish or omit any exclusive concept names and codes that do not apply to humans. See Image 4 below

Image 4, Implementations and SDO uses

Image 5, USHIK HITSP

  1. Consider that all posted data needs to be checked for validity and reliability (multiple sources, scholarly publications). These links can be posted under the “Link to original source(s), extra sources, or Implementations and SDO site” column.
    1. Some data on the Implementations and SDO uses page may need to be verified with original sources to find any additional pieces of information such as Concept Codes and Code System Names.
    2. Are we collecting all value sets available or should we only sample from certain countries or regions? i.e. “known required representations of sex and gender identity” is very vague and “known” could be defined.
      1. Example: Saskatchewan eHealth is a very specific, niche source of value sets provided by one regional province of Canada. Should this be included in the evaluations or should one national source of value sets be representative enough (such as Canadian Institute for Health Information)?

 

  1. Consider if sources including value sets about sexual orientation should be included or excluded. Consider Gender Harmony Project Goals.

Image 6, Implementations and SDO uses

  1. Consider LOINC: there are many similar value sets that differ in title. This can be compared to the concern that HL7 has many different versions of the same intended value sets. The following Image 8 and 9 are two different value sets published by LOINC on Gender Identity, with the same Concept Codes.
    1. Consider how to represent this information in the compiled document?
    2. Should the most recently published value set be used?

 

image.png

Image 8, LOINC obtained from shared Google docs on Implementations and SDO uses page

Image 9, Accessed from link on ACLA site , from The American Clinical Laboratory Association (ACLA) heading on Implementations and SDO uses page

  1. Note that on the US 2015 Rule value sets , the description indicates that code system names are required, but does not list specific one each time. Consider how to find the information or cite discrepancies. See following Image 10

Image 10, Implementations and SDO uses

 

  1. Consider second sheet SexGenderVisual : Code System Name row has been omitted for visual appeal. Should we allow sources to share concept names for lack of Code System Names and for visual effect?
    1. Consider that many Concept Names do not have either a Code System Name or Concept Code.
      1. For example, consider Concept Name “Female” for Australia. All that we have is “Female” as a Code name, however if there is more information that exists, such as Code System Name and Concept Code, but we do not know, should we stack matching Concept Names from other sources?
      2. Combined and indicated both of sources
    2. Consider that some concept names consist of the same wording, and some have slightly different variations.
      1. For example, Saludax Australia lists the following concepts: “Intersex”, “Indeterminate”, and “Unknown/Inadequately Described”. METeOR Australia lists the following concepts: “Intersex or Indeterminate”, “Unknown”, and “Not Stated/Inadequately Described”. How do we record this?

 

  1. The PHINVADS Sources “Administrative Gender” found in cell 6A is the same information provided on the Implementation and SDO uses page by Germany “HL7 Administrative Gender”. These codes are both published by HL7 version 3 .
    1. Cited different versions under notes
    2. Should these Concept Names be stacked on spreadsheet? Make note that they appear to be the same and if there is a discrepancy
    3. Findings: PHINVADS source uses version 3, HL7 source uses most up to date version (4). Consider omitting or longitudinal sheet, see question 8.

 

  1. The xDT source provided by Germany appears to use same codes by German Cancer Registry. There is no Code System Name provided for either, so should the Concept Names be stacked ?
    1. Concept names with no Code Systems are being stacked.

 

  1. Consider that some contributions such as the Canadian Institute for Health Information (CIHI) contains different “Data Holdings” for concept names; should these different “Data Holdings” be considered different Sources or different Code System Names ? See Image 1 below
    1. This was resolved to be added as a separate column (Application/Program Used) in cell F5

Image 1, Implementations and SDO uses

  1. Added notes under Code System Name row to include any additional descriptions, definitions or info on where Concept Name came from (cell 4J).
  2. Consider how to implement US ONC Interoperability Standards Advisory (ISA) into spreadsheet? The following Image 7 shows the sources for value sets that HealthIt.gov has in production . However, links to these value sets are

Image 7, HealthIt.gov