Data Element
Recorded Sex or Gender (RSG)
Description

A documentation of sex and/or gender information that is not a patient specified gender identity or a properly specified Sex For Clinical Use. A recorded sex or gender item is contextually bound to the particular element or field name, and the document or record that contains the field.
Submitted By: Robert McClure, MD / HL7 International
Data Element Information
Rationale for Separate Consideration The existing USCDI Data Element “Sex (Assigned at Birth)” is is not a reliable representation of a patient gender identity, nor is it a contextually specified sex for clinical use. Additionally, many jurisdicitions allow modification of this element for other purposes so the meaning is unclear. While “Sex (Assigned at Birth)” which may, or may not be the “Gender Marker on Original Birth Certificate” (perhaps more accurately termed “assigned gender at birth”) is a common data element in a number of jurisdictions, it currently lacks a consistent definition from jurisdiction to jurisdiction and is open to clinically dangerous misuse. Therefore we recommend that it be represented as a specific RSG with the source field identifier of “Sex assigned at birth.”
Use Case Description(s)
Use Case Description Clinical and administrative data is filled with data fields named in some way as “sex” or “gender” that are not well defined gender identity or sex for clinical use based upon specific clinical observation. Each of these data fields, exchanged millions of times a year, are better understood as a particular recording of some value considered a representation of the patient “sex” or the patient “gender”, yet very rarely is that field a demonstratably clear SFCU or gender identity. For instance, a trans woman may be able to update her driver’s license to ‘F’ but her state might not allow changing a value on her birth certificate, which may still read ‘M’. Depending on the system or record, either of these values may be present as “sex”.
Therefore what we propose is to identify all this frequenly exchanged information for what it actually is: a “recorded sex or gender” and include the clarifying information as described in the HL7 Gender Harmony informative guide . Additional information is also found in the JAMIA article discussing the project .

International H. HL7® Informative Document: Gender Harmony - Modeling Sex and Gender Representation, Release 1. 2021.http://www.hl7.org/implement/standards/product_brief.cfm?product_id=564 (accessed 21 Nov 2021).
McClure RC, Macumber CL, Kronk C, et al. Gender harmony: improved standards to support affirmative care of gender-marginalized people through inclusive gender and sex representation. J Am Med Inform Assn 2022;29:354–63. doi:10.1093/jamia/ocab196
Estimate the breadth of applicability of the use case(s) for this data element This element is included in almost every clinical and administrative record.
Link to use case project page https://confluence.hl7.org/display/VOC/Cross+Paradigm+Use+Cases
Use Case Description Sex assigned at birth rendered as a Recorded Sex or Gender element is provided in the attached pdf
Estimate the breadth of applicability of the use case(s) for this data element The majority of patient data records currently include a sex assigned at birth RSG.
Supporting Attachments RSG SAAB example.pdf
Healthcare Aims
  • Improving patient experience of care (quality and/or satisfaction)
  • Improving the health of populations
  • Improving provider experience of care
Maturity of Use and Technical Specifications for Data Element
Applicable Standard(s) LOINC “Recorded sex or gender” 99502-7
https://loinc.org/99502-7/
Additional Specifications HL7 Gender Harmony informative publication http://www.hl7.org/implement/standards/product_brief.cfm?product_id=564
Current Use In limited use in production environments
Supporting Artifacts There are systems, such as Epic, and other locally configured systems, such as at the Fenway Institute in Boston, that support an approach similar to RSG.
Extent of exchange N/A
Potential Challenges
Restrictions on Standardization (e.g. proprietary code) No restrictions other than changing the perceived approach to this common element.
Restrictions on Use (e.g. licensing, user fees) None
Privacy and Security Concerns Some RSG data items may represent PHI
Estimate of Overall Burden Many systems will simply internally identify any RSG element with a tag to indicate it is an RSG and therefore should not be considered a gender identity or be used as a sex for clinical use. Implementation strategies will vary but should not be difficult once adopted.
Other Implementation Challenges None
ONC Evaluation Details
Each submitted Data Element has been evaluated based on the following criteria. The overall Level classification is a composite of the maturity based on these individual criteria. This information can be used to identify areas that require additional work to raise the overall classification level and consideration for inclusion in future versions of USCDI
Criterion #1
Maturity - Current Standards		 Level 2 - Data element is represented by a terminology standard or SDO-balloted technical specification or implementation guide.
Criterion #2
Maturity - Current Use 		Level 2 - Data element is captured, stored, or accessed in multiple production EHRs or other HIT modules from more than one developer.
Criterion #3
Maturity - Current Exchange		 Level 1 - Data element is electronically exchanged between two production EHRs or other HIT modules using available interoperability standards.
Criterion #4
Use Case(s) - Breadth of Applicability		 Level 2 - Use cases apply to most care settings or specialties.

Comment

Submitted by rmcclure on

See comment on RSG data class

Per the Gender Harmony Project as discussed and voted on 2023-04-17, please see the comment on the RSG data class.

Submitted by cmayo@med.umich.edu on

Gender

The AAPM Operational Ontology for Radiation Oncology  ( https://aapmbdsc.azurewebsites.net) evaluated several systems for identifying gender. HL7 Reference system was recommended. 

http://hl7.org/fhir/2018May/codesystem-gender-identity.html

Values are 

transgender-female    
transgender-male    
non-binary    
male    
female    
other    
non-disclose    


Other systems evaluated were 

CDC https://phinvads.cdc.gov/vads/ViewValueSet.action?oid=2.16.840.1.113883.1.11.1

DICOM http://dicom.nema.org/medical/dicom/current/output/chtml/part16/sect_CID_7455.html#table_CID_7455

Health IT https://www.healthit.gov/isa/representing-patient-gender-identity

LOINC https://loinc.org/76691-5/

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