Patient Demographics/Information
Data used to categorize individuals for identification, records matching, and other purposes.
Data Element
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Applicable Vocabulary Standard(s)
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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
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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
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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.
|
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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) |
Data Element
|
Applicable Vocabulary Standard(s)
|
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.
|
|
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) |
Data Element
|
Applicable Vocabulary Standard(s)
|
Name Suffix
Name component following family name that may be used to describe a person's position in a family.
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Date of Birth
Known or estimated year, month, and day of the patient's birth.
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Date of Death
Known or estimated year, month, and day of the patient's death.
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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)
|
Sex
Documentation of a specific instance of sex and/or gender information.
|
- 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.
|
- SNOMED International, Systematized Nomenclature of Medicine Clinical Terms (SNOMED CT®) U.S. Edition, March 2022 Release
|
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) |
Email Address
Unique identifier of an individual's email account that is used to send and receive email messages.
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|
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)
|
Name Suffix
Name component following family name that may be used to describe a person's position in a family.
|
|
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)
|
Sex
Documentation of a specific instance of sex and/or gender information.
|
SNOMED International, Systematized Nomenclature of Medicine Clinical Terms (SNOMED CT®) U.S. Edition, September 2022 Release |
Sexual Orientation
A person’s emotional, romantic, sexual, or affectional attraction to another person.
|
- SNOMED International, Systematized Nomenclature of Medicine Clinical Terms (SNOMED CT®) U.S. Edition, September 2022 Release
|
Gender Identity
A person’s internal sense of being a man, woman, both, or neither.
|
- SNOMED International, Systematized Nomenclature of Medicine Clinical Terms (SNOMED CT®) U.S. Edition, September 2022 Release
|
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.
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Email Address
Unique identifier of an individual's email account that is used to send and receive email messages.
|
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Relationship Type
Relationship of a person to a patient.
Examples include but are not limited to parent, next-of-kin, guardian, and custodian.
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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
|
Submitted by Sokhen472@ on 2022-04-29
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