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PSS-1387 - Getting issue details... STATUS


1a. Project Name

Gender Harmony Project

1b. Project ID

1533

1c. Is Your Project an Investigative Project (aka PSS-Lite)?

No

1d. Is your Project Artifact now proceeding to Normative directly or after being either Informative or STU?

No

2a. Primary/Sponsor WG

Vocabulary

2b. Co-Sponsor WG

Patient Care

2c. Co-Sponsor Level of Involvement

Request formal content review prior to ballot

2b. Co-Sponsor WG 2

Public Health

2c. Co-Sponsor Level of Involvement

Request periodic project updates; specify period in text box below (e.g. 'Monthly', 'At WGMs', etc.)

2c. Co-Sponsor 2 Update Periods

at WGMs

2b. Co-Sponsor WG 3

Patient Administration

2c. Co-Sponsor Level of Involvement

Request formal content review prior to ballotRequest periodic project updates; specify period in text box below (e.g. 'Monthly', 'At WGMs', etc.)

2c. Co-Sponsor 3 Update Periods

at WGMs

2b. Co-Sponsor WG 4

Financial Management

2c. Co-Sponsor Level of Involvement

Request periodic project updates; specify period in text box below (e.g. 'Monthly', 'At WGMs', etc.)

2d. Project Facilitator

Rob McClure

2e. Other Interested Parties (and roles)

HL7 Netherland (@Alexander Henket), HL7 Germany (@Kai U. Heitmann), HL7 Canada (@Andrea MacLean), HL7 Australia (@Reuben Daniels) And see https://confluence.hl7.org/display/VOC/Project+participants

2h. Vocabulary Facilitator

@rob

2m. Implementers

n/a

3a. Project Scope

1. identify the primary types of sex/gender classifications/uses that are currently needed for health data documentation and exchange The intent is to primarily represent actual user needs that relects end user community needs including the international community.
⁃ Name and define these types. This class of things will, for now, be referred to as Sex-GenderTypes
⁃ include descriptions of the context of use for each Sex-GenderType.
⁃ If no real context of use can be identified then place the type on a to-do list and move on. Where agreement exists, link the context of use to existing clinical models/systems.
⁃ It is fine to identify existing model/systems that based on definition or existing allowed values, are linked to multiple sexy types.
⁃ Clarify the general context of use (write a definition) for the word “Sex” and the word “gender”
⁃ Pay particular attention to situations where a change in context of use may result in different sex or gender identity may change for the same person (IE: looks like a male but has female sex organs.)
2. Identify code/description/definition (ie, concepts, but not necessarily from an existing code system) to be used for each Sex-GenderType
⁃ While we may draw from a code system, this is not intended to restrict the process to use existing concepts. We’ll match things up later
⁃ Work to align with existing use and existing concepts, but not be hog-tied to them
3. Based on the context of use determined for the Sex-GenderTypes. Decide if the value set associated with the SexyType is “closed” or “open.”
⁃ CLOSED - no further concepts are to be used. This means any situation that doesn’t quite seem to fit one of the defined values would have to compromise and pick an existing value.
⁃ This means if we need to support Other or Unknown, we say that. (A so called null type)
⁃ OPEN - the defined set of concepts can be extended if the meaning that needs be sent is not in the provided value set. This is exactly equivalent to the FHIR Extensible binding strength. The expectation is that a concept from a different code system would be sent, and if that is not supported, then a text string.
⁃ If two Sex-GenderTypes are the same but one context needs to have a null, or needs to not be closed, that is a different context, so it’s a different Sex-GenderType.

Out of Scope but mentioned in the informative document:
⁃ Additions or modifications to any base (balloted) standards (eg. FHIR, v2, CDA, etc)
⁃ The use of pronouns as a way of describing or addressing a person's sex or gender identity
⁃ Any potential changes to external code systems (LOINC for observations, SNOMED CT - new sex/gender types) but we will keep these authorities aware of any potential changes to consider.

3b. Project Need

This is project born of the ongoing frustration the ideas encompassed by "sex" and "gender" have never been easy to capture consistently within health models. In particular it has become common for there to exist a single "sex" or "gender" field in a data collection model when in fact it seems that individuals can be represented by multiple types of sex identity (biologic sex) and a gender identity *at the same time* and those identities can properly be represented with "opposite" codes (M for one meaning and F for another) resulting in end-use confusion, increased costs, and negative clinical and social impact. This project intends to provide a framework to disambiguate these issues.

3c. Security Risk

No

3e. Objectives/Deliverables and Target Dates

A white paper that provides an overview of the general issues involved and provides a set of defined "sex-gendertypes" which are named descriptions for sex and gender value sets with explicitly defined member content. In addition we will identify, in part, existing sex or gender model elements that appear to use these types, and where possible, identify apparent use case situations that could be improved by implementing these more specifically defined sex-gendertypes
This will include identifying use cases and specifications that could be updated to reference the output of this project through some other project activity. e.g. The FHIR Patient resource Gender section could refer back to this output document. We also plan to specify FHIR value sets for all of the sex-gender types.

We currently intend to submit for ballot no later than May 2020 but will attempt to met January 2020 ballot deadlines if possible.

3i. HL7-Managed Project Document Repository URL:

https://confluence.hl7.org/display/VOC/The+Gender+Harmony+Project

3j. Backwards Compatibility

No

3l. Using Current V3 Data Types?

No

3m. External Vocabularies

Yes

3n. List of Vocabularies

SNOMED CT, LOINC, HL7

4a. Products

White Paper

5a. Project Intent

White Paper

5a. White Paper Type

Balloted Informative

5b. Project Ballot Type

Informative

5d. Joint Copyright

No

6f. Stakeholders

Quality Reporting Agencies, Regulatory Agency, Standards Development Organizations (SDOs), Payors

6g. Vendors

EHR, PHR, Clinical Decision Support Systems, Lab

6h. Providers

Clinical and Public Health Laboratories, Healthcare Institutions (hospitals, long term care, home care, mental health)

6i. Realm

Universal

7a. Management Group(s) to Review PSS

CDA, FHIR, V2

7b. Sponsoring WG Approval Date

May 09, 2019

7c. Co-Sponsor 3 Approval Date

May 22, 2019

7c. Co-Sponsor 4 Approval Date

May 21, 2019

7f. FMG Approval Date

May 29, 2019

7i. Steering Division Approval Date

Jul 01, 2019