Data used to categorize individuals for identification, records matching, and other purposes.

Data Element

Applicable Vocabulary Standard(s)

First Name

Last Name

Middle Name (Including middle initial)

Suffix

Previous Name

Date of Birth

Race

Both standards are required

  • The Office of Management and Budget Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity, Statistical Policy Directive No. 15, as revised, October 30, 1997
  • CDC Race and Ethnicity Code Set Version 1.0 (March 2000)

Adopted at 45 CFR 170.207(f)

Ethnicity

Both standards are required

  • The Office of Management and Budget Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity, Statistical Policy Directive No. 15, as revised, October 30, 1997
  • CDC Race and Ethnicity Code Set Version 1.0 (March 2000)

Adopted at 45 CFR 170.207(f)

Birth Sex

Birth sex must be coded in accordance with HL7 Version 3 (V3) Standard, Value Sets for AdministrativeGender and NullFlavor attributed as follows:

  • Female. F
  • Male. M
  • Unknown. nullFlavor UNK

Adopted at 45 CFR 170.207(n) 

Preferred Language

Request for Comment (RFC) 5646, “Tags for Identifying Languages”, September 2009

Adopted at 45 CFR 170.207(g)

Current Address

Includes street name, number, city/town, state, and zip code.

Previous Address

Includes street name, number, city/town, state, and zip code.

Phone Number

Both standards are required

  • ITU-T E.123, Series E: Overall Network Operation, Telephone Service, Service Operation and Human Factors, International operation - General provisions concerning users: Notation for national and international telephone numbers, email addresses and web addresses, February 2001
  • ITU-T E.164, Series E: Overall Network Operation, Telephone Service, Service Operation and Human Factors, International operation - Numbering plan of the international telephone service, The international public telecommunication numbering plan, November 2010

Adopted at 45 CFR 170.207(q)(1)

Phone Number Type

Email Address

Data Element

Applicable Vocabulary Standard(s)

First Name

Last Name

Middle Name (Including middle initial)

Suffix

Previous Name

Date of Birth

Race

Both standards are required

  • The Office of Management and Budget Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity, Statistical Policy Directive No. 15, as revised, October 30, 1997
  • CDC Race and Ethnicity Code Set Version 1.0 (March 2000)

Adopted at 45 CFR 170.207(f)

Ethnicity

Both standards are required

  • The Office of Management and Budget Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity, Statistical Policy Directive No. 15, as revised, October 30, 1997
  • CDC Race and Ethnicity Code Set Version 1.0 (March 2000)

Adopted at 45 CFR 170.207(f)

Sex (Assigned at Birth)

Birth sex must be coded in accordance with HL7 Version 3 (V3) Standard, Value Sets for AdministrativeGender and NullFlavor attributed as follows:

  • Female. F
  • Male. M
  • Unknown. nullFlavor UNK

Adopted at 45 CFR 170.207(n) 

Sexual Orientation

A person’s identification of their emotional, romantic, sexual, or affectional attraction to another person

Sexual orientation must be coded in accordance with SNOMED CT® and HL7 Version 3 Standard, Value Sets for AdministrativeGender and NullFlavor, attributed as follows:

  • Lesbian, gay or homosexual. 38628009
  • Straight or heterosexual. 20430005
  • Bisexual. 42035005
  • Something else, please describe. nullFlavor OTH
  • Don't know. nullFlavor UNK
  • Choose not to disclose. nullFlavor ASKU

Adopted at 45 CFR 170.207(o)(1)

Gender Identity

A person’s internal sense of being a man, woman, both, or neither.

Gender Identify must be coded in accordance with SNOMED CT® and HL7 Version 3 Standard, Value Sets for AdministrativeGender and NullFlavor, attributed as follows:

  • Male. 446151000124109
  • Female. 446141000124107
  • Female-to-Male (FTM)/Transgender Male/Trans Man. 407377005
  • Male-to-Female (MTF)/Transgender Female/Trans Woman. 407376001
  • Genderqueer, neither exclusively male nor female. 446131000124102
  • Additional gender category or other, please specify. nullFlavor OTH
  • Choose not to disclose. nullFlavor ASKU

Adopted at 45 CFR 170.207(o)(2)

Preferred Language

Request for Comment (RFC) 5646, “Tags for Identifying Languages”, September 2009

Adopted at 45 CFR 170.207(g)

Current Address

Includes street name, number, city/town, state, and zip code.

Previous Address

Includes street name, number, city/town, state, and zip code.

Phone Number

Both standards are required

  • ITU-T E.123, Series E: Overall Network Operation, Telephone Service, Service Operation and Human Factors, International operation - General provisions concerning users: Notation for national and international telephone numbers, email addresses and web addresses, February 2001
  • ITU-T E.164, Series E: Overall Network Operation, Telephone Service, Service Operation and Human Factors, International operation - Numbering plan of the international telephone service, The international public telecommunication numbering plan, November 2010

Adopted at 45 CFR 170.207(q)(1)

Phone Number Type

Email Address

Data Element

Applicable Vocabulary Standard(s)

First Name

Last Name

Middle Name (Including middle initial)

Name Suffix

Name component following family name that may be used to describe a person's position in a family.

Previous Name

Date of Birth

Date of Death

Known or estimated year, month, and day of the patient's death.

Race

Both standards are required

  • The Office of Management and Budget Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity, Statistical Policy Directive No. 15, as revised, October 30, 1997
  • CDC Race and Ethnicity Code Set Version 1.2 (July 2021)
Ethnicity

Both standards are required

  • The Office of Management and Budget Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity, Statistical Policy Directive No. 15, as revised, October 30, 1997
  • CDC Race and Ethnicity Code Set Version 1.2 (July 2021)
Tribal Affiliation

Sex

Documentation of a specific instance of sex.

  • SNOMED International, Systematized Nomenclature of Medicine Clinical Terms (SNOMED CT®) U.S. Edition, March 2022 Release 
Sexual Orientation

A person’s identification of their emotional, romantic, sexual, or affectional attraction to another person

  • SNOMED International, Systematized Nomenclature of Medicine Clinical Terms (SNOMED CT®) U.S. Edition, March 2022 Release  
Gender Identity

A person’s internal sense of being a man, woman, both, or neither.

Gender Identify must be coded in accordance with SNOMED CT® and HL7 Version 3 Standard, Value Sets for AdministrativeGender and NullFlavor, attributed as follows:

  • Male. 446151000124109
  • Female. 446141000124107
  • Female-to-Male (FTM)/Transgender Male/Trans Man. 407377005
  • Male-to-Female (MTF)/Transgender Female/Trans Woman. 407376001
  • Genderqueer, neither exclusively male nor female. 446131000124102
  • Additional gender category or other, please specify. nullFlavor OTH
  • Choose not to disclose. nullFlavor ASKU

Adopted at 45 CFR 170.207(o)(2)

Preferred Language

Request for Comment (RFC) 5646, “Tags for Identifying Languages”, September 2009

Adopted at 45 CFR 170.207(g)

Current Address

Place where a person is located or may be contacted. 

  • Project US@ Technical Specification for Patient Addresses, Final Version 1.0 
Previous Address

Prior place where a person may have been located or could have been contacted.

  • Project US@ Technical Specification for Patient Addresses, Final Version 1.0
Phone Number

Numbers and symbols to contact an individual when using a phone.

Both standards are required:

  • ITU-T E.123, Series E: Overall Network Operation, Telephone Service, Service Operation and Human Factors, International operation - General provisions concerning users: Notation for national and international telephone numbers, email addresses and web addresses, February 2001
  • ITU-T E.164, Series E: Overall Network Operation, Telephone Service, Service Operation and Human Factors, International operation - Numbering plan of the international telephone service, The international public telecommunication numbering plan, November 2010

Adopted at 45 CFR 170.207(q)(1)

Phone Number Type

Contact point when using a phone (e.g., home, work, mobile).

Email Address

Unique identifier of an individual's email account that is used to send and receive email messages.

Related Person's Name

Name of a person with a legal or familial relationship to a patient.

Related Person's Relationship

Relationship of a person to a patient. (e.g., parent, next-of-kin, guardian, custodian)

Occupation

Type of work of a person. (e.g., infantry, business analyst, social worker)

  • Occupational Data for Health, version 20201030
Occupation Industry

Type of business that compensates for work or assigns work to an unpaid worker or volunteer. (e.g., U.S. Army, cement manufacturing, children and youth services)

  • Occupational Data for Health, version 20201030

Data Element

Applicable Vocabulary Standard(s)

First Name

Last Name

Middle Name (Including middle initial)

Name Suffix

Name component following family name that may be used to describe a person's position in a family.

Previous Name

Date of Birth

Known or estimated year, month, and day of the patient's birth.

Date of Death

Known or estimated year, month, and day of the patient's death.

Race

Both standards are required

  • The Office of Management and Budget Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity, Statistical Policy Directive No. 15, as revised, October 30, 1997
  • CDC Race and Ethnicity Code Set Version 1.2 (July 2021)
Ethnicity

Both standards are required

  • The Office of Management and Budget Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity, Statistical Policy Directive No. 15, as revised, October 30, 1997
  • CDC Race and Ethnicity Code Set Version 1.2 (July 2021)
Tribal Affiliation

Tribe or band with which an individual associates.

Sex

Documentation of a specific instance of sex.

Both values must be supported:

  • SNOMED CT U.S. Edition: 248152002 (Female)
  • SNOMED CT U.S. Edition: 248153007 (Male)
Preferred Language

  • IETF (Internet Engineering Task Force) Request for Comment (RFC) 5646, “Tags for
    Identifying Languages”, September 2009

Adopted at 45 CFR 170.207(g)(2)

Current Address

Place where a person is located or may be contacted

  • Project US@ Technical Specification for Patient Addresses, Final Version 1.0
Previous Address

Prior place where a person may have been located or could have been contacted.

  • Project US@ Technical Specification for Patient Addresses, Final Version 1.0
Phone Number

Numbers and symbols to contact an individual when using a phone.

Both standards are required:

  • ITU-T E.123, Series E: Overall Network Operation, Telephone Service, Service Operation and Human Factors, International operation - General provisions concerning users: Notation for national and international telephone numbers, email addresses and web addresses, February 2001
  • ITU-T E.164, Series E: Overall Network Operation, Telephone Service, Service Operation and Human Factors, International operation - Numbering plan of the international telephone service, The international public telecommunication numbering plan, November 2010

Adopted at 45 CFR 170.207(q)(1)

Phone Number Type

Contact point when using a phone (e.g., home, work, mobile).

Email Address

Unique identifier of an individual's email account that is used to send and receive email messages.

Related Person's Name

Name of a person with a legal or familial relationship to a patient.

Related Person's Relationship

Relationship of a person to a patient. (e.g., parent, next-of-kin, guardian, custodian)

Occupation

Type of work of a person. (e.g., infantry, business analyst, social worker)

  • Occupational Data for Health, version 20201030
Occupation Industry

Type of business that compensates for work or assigns work to an unpaid worker or volunteer. (e.g., U.S. Army, cement manufacturing, children and youth services)

  • Occupational Data for Health, version 20201030

Data Element

Applicable Vocabulary Standard(s)

First Name

Last Name

Middle Name (Including middle initial)

Name Suffix

Name component following family name that may be used to describe a person's position in a family.

Previous Name

Date of Birth

Known or estimated year, month, and day of the patient's birth.

Date of Death

Known or estimated year, month, and day of the patient's death.

Race

Both standards are required

  • The Office of Management and Budget Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity, Statistical Policy Directive No. 15, as revised, October 30, 1997
  • CDC Race and Ethnicity Code Set Version 1.2 (July 2021)
Ethnicity

Both standards are required

  • The Office of Management and Budget Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity, Statistical Policy Directive No. 15, as revised, October 30, 1997
  • CDC Race and Ethnicity Code Set Version 1.2 (July 2021)
Tribal Affiliation

Tribe or band with which an individual associates.

Sex

Documentation of a specific instance of sex.

Both values must be supported:

  • SNOMED CT U.S. Edition: 248152002 (Female)
  • SNOMED CT U.S. Edition: 248153007 (Male)
Preferred Language

  • IETF (Internet Engineering Task Force) Request for Comment (RFC) 5646, “Tags for Identifying Languages”, September 2009

Adopted at 45 CFR 170.207(g)(2)

Current Address

Place where a person is located or may be contacted

  • Project US@ Technical Specification for Patient Addresses, Final Version 1.0
Previous Address

Prior place where a person may have been located or could have been contacted.

  • Project US@ Technical Specification for Patient Addresses, Final Version 1.0
Phone Number

Numbers and symbols to contact an individual when using a phone.

Both standards are required

  • ITU-T E.123, Series E: Overall Network Operation, Telephone Service, Service Operation and Human Factors, International operation - General provisions concerning users: Notation for national and international telephone numbers, email addresses and web addresses, February 2001
  • ITU-T E.164, Series E: Overall Network Operation, Telephone Service, Service Operation and Human Factors, International operation - Numbering plan of the international telephone service, The international public telecommunication numbering plan, November 2010

Adopted at 45 CFR 170.207(q)(1)

Phone Number Type

Contact point when using a phone.

Examples include but are not limited to home, work, and mobile.

Email Address

Unique identifier of an individual's email account that is used to send and receive email messages.

Related Person's Name

Name of a person with a legal or familial relationship to a patient.

Relationship Type

Relationship of a person to a patient.

Examples include but are not limited to parent, next-of-kin, guardian, and custodian.

Occupation

Type of work of a person.

Examples include but are not limited to infantry, business analyst, and social worker.

  • Occupational Data for Health, version 20201030
Occupation Industry

Type of business that compensates for work or assigns work to an unpaid worker or volunteer.

Examples include but are not limited to U.S. Army, cement manufacturing, and children and youth services.

  • Occupational Data for Health, version 20201030

Data Element

Applicable Vocabulary Standard(s)

First Name

Last Name

Middle Name (Including middle initial)

Name Suffix

Name component following family name that may be used to describe a person's position in a family.

Previous Name

Date of Birth

Known or estimated year, month, and day of the patient’s birth.

Date of Death

Known or estimated year, month, and day of the patient’s death.

Race

Both standards are required

  • The Office of Management and Budget Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity, Statistical Policy Directive No. 15, as revised, October 30, 1997
  • CDC Race and Ethnicity Code Set Version 1.2 (July 2021)
Ethnicity

Both standards are required

  • The Office of Management and Budget Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity, Statistical Policy Directive No. 15, as revised, October 30, 1997
  • CDC Race and Ethnicity Code Set Version 1.2 (July 2021)
Tribal Affiliation

Tribe or band with which an individual associates.

Sex

Documentation of a specific instance of sex.

Both values must be supported:

  • SNOMED CT U.S. Edition: 248152002 (Female)
  • SNOMED CT U.S. Edition: 248153007 (Male)
Preferred Language

  • IETF (Internet Engineering Task Force) Request for Comment (RFC) 5646, “Tags for Identifying Languages”, September 2009

Adopted at 45 CFR 170.207(g)(2)

Interpreter Needed

Indication of whether a person needs language interpretation services.

  • Logical Observation Identifiers Names and Codes (LOINC) version 2.77
  • SNOMED Clinical Terms® (SNOMED CT®) U.S. Edition, March 2024 Release
Current Address

Place where a person is located or may be contacted.

Usage note: If the address pattern is not supported in the standard, implementations should align as closely as possible and avoid truncating any values.

  • Project US@ Technical Specification for Patient Addresses, Final Version 1.0
Previous Address

Prior place where a person may have been located or could have been contacted.

Usage note: If the address pattern is not supported in the standard, implementations should align as closely as possible and avoid truncating any values.

  • Project US@ Technical Specification for Patient Addresses, Final Version 1.0
Phone Number

Both standards are required

  • ITU-T E.123, Series E: Overall Network Operation, Telephone Service, Service Operation and Human Factors, International operation - General provisions concerning users: Notation for national and international telephone numbers, email addresses and web addresses, February 2001
  • ITU-T E.164, Series E: Overall Network Operation, Telephone Service, Service Operation and Human Factors, International operation - Numbering plan of the international telephone service, The international public telecommunication numbering plan, November 2010

Adopted at 45 CFR 170.207(q)(1)

Phone Number Type

Contact point when using a phone.

Examples include but are not limited to home, work, and mobile.

Email Address

Unique identifier of an individual's email account that is used to send and receive email messages.

Related Person's Name

Name of a person with a legal or familial relationship to a patient.

Relationship Type

Relationship of a person to a patient.

Examples include but are not limited to parent, next-of-kin, guardian, and custodian.

Occupation

Type of work of a person.

Examples include but are not limited to infantry, business analyst, and social worker.

  • Occupational Data for Health, version 20201030
Occupation Industry

Type of business that compensates for work or assigns work to an unpaid worker or volunteer.

Examples include but are not limited to U.S. Army, cement manufacturing, and children and youth services.

  • Occupational Data for Health, version 20201030

Data Element

Applicable Vocabulary Standard(s)

First Name

Last Name

Middle Name (Including middle initial)

Name Suffix

Name component following family name that may be used to describe a person's position in a family.

Previous Name

Date of Birth

Known or estimated year, month, and day of the patient’s birth.

Date of Death

Known or estimated year, month, and day of the patient’s death.

Race

Both standards are required

  • The Office of Management and Budget Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity, Statistical Policy Directive No. 15, as revised, October 30, 1997
  • CDC Race and Ethnicity Code Set Version 1.3 May 2025
Ethnicity

Both standards are required

  • The Office of Management and Budget Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity, Statistical Policy Directive No. 15, as revised, October 30, 1997
  • CDC Race and Ethnicity Code Set Version 1.3 May 2025
Tribal Affiliation

Tribe or band with which an individual associates.

Sex

Documentation of a specific instance of sex.

  • SNOMED Clinical Terms (SNOMED CT) U.S. Edition, March 2025 Release

Both values must be supported:

  • SNOMED CT U.S. Edition: 248152002 (Female)
  • SNOMED CT U.S. Edition: 248153007 (Male)
Preferred Language

  • IETF (Internet Engineering Task Force) Request for Comment (RFC) 5646, “Tags for Identifying Languages”, September 2009

Adopted at 45 CFR 170.207(g)(2)

Interpreter Needed

Indication of whether a person needs language interpretation services.

  • Logical Observation Identifiers Names and Codes (LOINC) version 2.80
  • SNOMED Clinical Terms® (SNOMED CT®) U.S. Edition, March 2025 Release
Current Address

Place where a person is located or may be contacted.

Usage note: If the address pattern is not supported in the standard, implementations should align as closely as possible and avoid truncating any values.

  • Project US@ Technical Specification for Patient Addresses, Final Version 1.0
Previous Address

Prior place where a person may have been located or could have been contacted.

Usage note: If the address pattern is not supported in the standard, implementations should align as closely as possible and avoid truncating any values.

  • Project US@ Technical Specification for Patient Addresses, Final Version 1.0
Phone Number

Numbers and symbols to contact an individual when using a phone.

Both standards are required:

  • ITU-T E.123, Series E: Overall Network Operation, Telephone Service, Service Operation and Human Factors, International operation - General provisions concerning users: Notation for national and international telephone numbers, email addresses and web addresses, February 2001
  • ITU-T E.164, Series E: Overall Network Operation, Telephone Service, Service Operation and Human Factors, International operation - Numbering plan of the international telephone service, The international public telecommunication numbering plan, November 2010

Adopted at 45 CFR 170.207(q)(1)

Phone Number Type

Contact point when using a phone.

Examples include but are not limited to home, work, and mobile.

Email Address

Unique identifier of an individual's email account that is used to send and receive email messages.

Related Person's Name

Name of a person with a legal or familial relationship to a patient.

Relationship Type

Relationship of a person to a patient.

Examples include but are not limited to parent, next-of-kin, guardian, and custodian.

Occupation

Type of work of a person.

Examples include but are not limited to infantry, business analyst, and social worker.

  • Occupational Data for Health, version 20201030
Occupation Industry

Type of business that compensates for work or assigns work to an unpaid worker or volunteer.

Examples include but are not limited to U.S. Army, cement manufacturing, and children and youth services.

  • Occupational Data for Health, version 20201030

Comment

CDC Supports CMS's Inclusion of a New Veteran Status Element

CDC supports CMS's comment for the inclusion of a new Veteran Status data element to be included in the Patient Demographics and Information data class in Level 2 of USCDI, as it is essential for identifying a high-priority population with unique healthcare needs, supporting care coordination, benefit eligibility, and reducing disparities across care settings.


 

CMS-CCSQ Recommends Inclusion of a new Veteran Status element

Recommendation:  CMS CCSQ recommends the Veteran Status data element be included in the Patient Demographics/Information data class in Level 2 of USCDI (previously submitted in an ONDEC form).

Rationale:  CMS CCSQ is requesting that Veteran Status be added to Level 2 of USCDI under the Patient Demographics/Information data class. Veteran Status is a critical data element that identifies a high-priority population that served in active military, naval, or air service under conditions other than dishonorable discharge, as defined by 13 CFR § 125.11. This data is essential for recognizing the unique healthcare needs of Veterans and their eligibility for specialized programs, such as behavioral health screenings and military toxic exposure evaluations under initiatives like the Promise to Address Comprehensive Toxics (PACT) Act. The inclusion of this data in USCDI would ensure that Veterans receive the necessary care and services, particularly when receiving care outside of Veterans Administration (VA) facilities. This is increasingly important as veterans are more frequently seeking care outside of VA facilities, so identifying Veteran Status is critical for facilitating coordination of care and follow-up. Veteran Status can be captured via patient self-declaration or verified in real time through authoritative, standards-based APIs, such as the VA-Developed Veteran Confirmation API.

Including Veteran Status in USCDI aligns with the broader goals of improving care for underserved populations, as it enables clinicians to tailor interventions to the specific needs of Veterans. By incorporating this data into the Patient Demographics category, providers will be able to leverage it for clinical decision support, such as triggering specialized interventions or referrals. Additionally, it supports administrative workflows like benefit eligibility reporting and quality measure assessments. 

The ability to track and stratify Veteran Status ensures that Veterans receive appropriate care regardless of their care setting, whether transitioning from a VA facility to a community hospital or receiving care from multiple providers. This inclusion helps reduce the risks veterans may face from receiving fragmented care across various providers and will also enhance interoperability, ensuring that Veteran Status is accurately exchanged across disparate healthcare systems, promoting coordinated care and continuity.

Technically, Veteran Status is supported by established standards, including the “US Veteran” extension in HL7 FHIR, which enhances interoperability and facilitates the exchange of this data across various healthcare systems. This data element has already been implemented in production environments, such as Epic and Oracle Cerner, proving its broad applicability. By formalizing Veteran Status in USCDI, we not only ensure Veterans receive the care they are entitled to but also support the ongoing efforts to reduce healthcare disparities and improve overall care quality for this underserved population.

Patient Identifying Information

NACHC agrees with the comments listed below. Patient Interpreter, Patient Preferred Name and Patient Pronoun are all key patient-centered concepts that support care teams in understanding and being responsive to patient culture and identity. We agree with the more detailed HL7 comments below.

 

Patient Demographics/Information: Interpreter Needed [New Data Element]

https://www.healthit.gov/isa/taxonomy/term/7903/draft-uscdi-v5

 

HL7 agrees that interpreters are needed and should be captured in provider electronic systems (i.e. EMR). Interpreters can assist providers with non-English-speaking patients in reviewing charts, scheduling appointments and care management.

HL7 observes that whether a patient needs an interpreter can also vary based on circumstance.  For example, a Spanish-speaking patient that has an appointment with a specialist that only speaks English may need an interpreter.  However, if that same patient has an appointment with their primary care physician who speaks Spanish, no interpreter would be necessary.  Exchanging the patient’s spoken language proficiency allows systems to determine whether a patient needs an interpreter for specific appointments or encounters based on the language proficiency of the other participants. The spoken language proficiency is the proposed alternative, rather than written language proficiency, as the existing “Preferred Language” data element enables systems to determine what language is preferred for written materials.

HL7 recommends that ONC:

  • adopt “Spoken Language Proficiency” as a patient demographic.
  • consider/clarify how “Interpreter Needed” should be used in cases where providers may offer different languages.
  • clarify how “Interpreter Needed” relates to the existing “Preferred Language” data element.

 

Patient Demographics/Information: Name to Use [New Data Element]

https://www.healthit.gov/isa/taxonomy/term/4586/draft-uscdi-v5

HL7 supports the inclusion of Name to Use in USCDI.  We note that existing HL7 standards already support the exchange of this information.

Additionally, HL7 highlights that payer and provider specific systems may or may not have these Name to Use data elements captured currently. There is notable variance. 

 

Patient Demographics /Information: Pronoun [New Data Element]

https://www.healthit.gov/isa/united-states-core-data-interoperability-uscdi#draft-uscdi-v5

HL7 supports the inclusion of Pronouns in USCDI. Our additional recommendations on this issue include recommending ONC:

  • adopt patient pronouns in USCDI as proposed.
  • delegate the work of identifying and defining vocabulary standards to consensus-based groups, such as US Core, as the vocabulary standards for this element are relatively new.

 

Lastly, HL7 observes shared data should not replace a person’s name, but may offer a supplement.  Both names and pronoun are not widely used nor included within systems. HL7 recommends that Caregiver(s) should also be included as a source of pronoun information.

NCQA Comment on Pronouns: for USCDI v5

  1. Pronouns:

NCQA supports adding the Pronouns element to USCDI (as proposed by Gender Harmony and represented in LOINC through “Observation: 90778-2 Personal Pronouns – Reported” and “Answer list: LL5144-2 Personal pronouns 1.3.6.1.4.1.12009.10.1.4011”). Understanding which pronoun(s) to use when referring to someone is important for providing affirming health care. It is important to reliably exchange personal pronouns that the individual has specifically reported they want used.

CMS-CCSQ Support for OMH's Interpreter Needed for USCDI v5

CMS-CCSQ supports "Interpreter Needed" as a new data element submission by OMH to USCDI v5. The addition of the "Interpreter Needed" data element aligns with ONC’s priorities to enhance health equity and support diverse populations, ultimately improving healthcare quality. The inclusion of this data element addresses the language service needs of historically underserved populations and for those with limited English proficiency. In addition, the element allows the patient to provide essential information for proper care and quality measurement. This data element is currently being collected as part of standardized PAC assessments in the Quality Reporting Program (https://del.cms.gov/DELWeb/pubDataEleDetail?asmtId=4&asmtItmId=A1100A) to inform the need for language access services.

By including the "Interpreter Needed" data element, healthcare providers can better tailor their services to meet the unique linguistic needs of each patient. The integration of this data element into USCDI v5 supports the broader objective of capturing and exchanging nuanced information related to language access services. It primarily elevates individualized care by enhancing patient understanding and the quality of care in the hospital, outpatient care, and post-acute care settings. This data feature also streamlines the referral process and care transitions by offering a standardized format for sharing interpretation requirements, optimizing operational workflows, and enriching the patient experience. In public health epidemiology, it can contribute to disease tracking and facilitate contact tracing efforts. This data element also could be instrumental in health equity studies by providing more precise data on language disparities. Finally, its integration could simplify federal data collection mandates, thereby lessening the administrative load on healthcare facilities.

Adding Related Person's Name to Patient Demographic Class

Unified Comment on behalf of the Maternal Health Consortium, funded by the Office of the Secretary’s Patient-Centered Outcomes Research Trust Fund (OS-PCORTF)

The rates of maternal mortality have been rising in the United States since 1987. Yet this measure does not capture data related to maternal health. Understanding maternal health before, during, and after childbirth is foundational for developing safer, more effective approaches to maternal care. Clinical data relevant to understanding this trend are not standardized, and data exchange is not interoperable across many relevant settings. Furthermore, maternal health and associated child health are inextricably linked – what happens during gestation, delivery, and after informs health outcomes of both mother and child – but relevant data is often held in separate, unconnected records. These issues impede research on maternal morbidity and longitudinal maternal care and associated impacts to infant health. Research on root causes of maternal mortality, poor outcomes, pediatric developmental problems, and effective treatments requires exchange of information stored in disparate sources, such as electronic health record (EHR) systems, disease registries, and public health agencies (PHAs).

 

Research use case populations as described in the draft Longitudinal Maternal & Infant Health -FHIR Implementation Guide (https://build.fhir.org/ig/HL7/fhir-mmm-ig/):

  • Pregnancy and subsequent death within a specific time frame: This cohort includes individuals who died within a year (365 days) of a pregnancy regardless of cause of death or pregnancy outcome.
  • Hypertensive Disorders of pregnancy: This use case focuses on individuals with a diagnosis of hypertensive disorders of pregnancy.

The Consortium strongly supports the addition of the Related Person’s Name data element to the Patient Demographic Class.  The related person relationship is an integral part of pairing mother (individuals who give birth) infant dyad. Exposures in utero to environmental factors, infections, medication, etc. are needed to identify if an event is related to an exposure in pregnancy, postpartum or lactation. In the description of the data element (https://www.healthit.gov/isa/taxonomy/term/2696/draft-uscdi-v3) recommend considering providing an example of the mother infant dyad as a critical, common related person situation.

 

The  "Related Person's Relationship" element and reference the MMM IG's approach to this: https://build.fhir.org/ig/HL7/fhir-mmm-ig/RelatedPerson-relatedperson-jane-smith-example.html.

http://hl7.org/fhir/us/vr-common-library/STU1/StructureDefinition-RelatedPerson-mother-gestational.html

 

Related Persons - Patient Support Network

Related Person information, including their preferred language, relationship, and scope of data to be shared, is essential to support the patient at all phases of their healthcare.  

Related Persons are the people who get the patient to and from their appointments, take care of them when they are at home, and are the first line of those to keep the patient compliant with the care orders from providers.  A simple walk through a clinic will see that many patients are accompanied by others. Not capturing and sharing this information puts patients at risk in the case of emergencies.

One of the repeated issues with acute patients is their admission to the ER and there being inconsistent or the complete lack of Related Persons information.  A non-communicative patient without related person information has no one to speak for them, to assist the care team regarding their baseline condition, or to provide recent historical information that is critical to proper treatment.

At every phase of interactions with the healthcare system, even the dispensing of drugs at a pharmacy, the related person's information is critical, especially with an aging population that proxies must have for their day-to-day care and may be incapable of communicating their needs or be physically incapable of supporting their own care.

One of the greatest contributions to improving care and reducing costs in the US would be the formalization and requirement of capturing related persons' information in a standard form, and providing this information to every corner of the systems managing patient care.

Adding Birth Time of Neonate to Date of Birth data element

Unified Comment on behalf of the Maternal Health Consortium, funded by the Office of the Secretary’s Patient-Centered Outcomes Research Trust Fund (OS-PCORTF)

The rates of maternal mortality have not improved in the United States since 1987. Yet this measure does not capture data related to maternal health. Understanding maternal health before, during, and after delivery is foundational for developing safer, more effective approaches to care. Clinical data relevant to understanding this trend are not standardized, and data exchange is not interoperable across many relevant settings. Furthermore, maternal health and associated child health are inextricably linked – what happens during gestation, delivery, and after informs health outcomes of both mother and child – but relevant data is often held in separate, unconnected records. These issues impede research on maternal morbidity and longitudinal maternal care and associated impacts to infant health. Research on root causes of maternal mortality, poor outcomes, pediatric developmental problems, and effective treatments requires exchange of information stored in disparate sources, such as electronic health record (EHR) systems, disease registries, and public health agencies (PHAs).

 

In use cases for either defining when an event occurred relative to a delivery, having infant birth time identified is critical.

The Consortium recommends adding birth time to the Date of Birth data element in the Patient Demographics data class. Our use cases focus on pregnancy and subsequent death within a specific timeframe and hypertensive disorders of pregnancy (pre, ante, and after pregnancy). The intent is to specify the consistent capture of clinical data of interest to maternal health researchers and outline implementing FHIR resources for that capture. Birth time is already supported in the FHIR interface of major EHR systems such as Cerner  https://www.healthit.gov/isa/uscdi-data/birth-time, Epic HL7 Standards Product Brief - HL7 FHIR® Implementation Guide: Vital Records Birth and Fetal Death Reporting, Release 1 - US Realm | HL7 International

Current LRI IG (hl7.org), and the FHIR birth time extension https://www.hl7.org/fhir/extension-patient-birthtime.html

Research use case populations as described in the draft Longitudinal Maternal & Infant Health Information for Research FHIR Implementation Guide (https://build.fhir.org/ig/HL7/fhir-mmm-ig/):

  • Pregnancy and subsequent death within a specific time frame: This cohort includes individuals who died within a year (365 days) of a pregnancy regardless of cause of death or pregnancy outcome.
  • Hypertensive Disorders of pregnancy: This use case focuses on individuals with a diagnosis of hypertensive disorders of pregnancy.

In both use cases, the neonate time of birth and the delivery time is important in identifying if an event is related and if the event occurred before delivery or after delivery within a defined time frame. This would allow for defining time of abatement (delivery) and the maternal or infant event.

 

supporting artifacts, e.g., Abhyankar, S., Lloyd-Puryear, M. A., Goodwin, R., Copeland, S., Eichwald, J., Therrell, B. L., Zuckerman, A., Downing, G., & McDonald, C. J. (2010). Standardizing newborn screening results for health information exchange. AMIA ... Annual Symposium proceedings. AMIA Symposium2010, 1–5.

Timestamp

It appears that the addition of a general timestamp data type is needed.  We recommend using ISO 8601 (UTC) as a way to capture the time at which an event occurs.

Addition of Previous Phone Numbers and Email

While USCDI V1 does contain Previous Address which can be very helpful for matching patient records together; two other elements would aid in this regard as well. WA DOH recommends adding previous phone number and email address for the purpose of being able to better identify records belonging to the same patient. This could be useful across data systems as well as in use with a master person index.

 

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