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)
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) 

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

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 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)
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

Comment

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  

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.

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.  

Tribal Affiliation

The Washington DOH subject matter experts on Tribal matters have the following comments: "The collection, usage, management, disclosure, and safeguarding of Tribal data is a governance activity that ONC should develop in collaboration with the Tribe(s) whose members are included in the data. The ONC should commit to meaningful consultation with tribal leaders of individual sovereign tribal nations to ensure they have an opportunity to provide timely input before using Tribal data, including Tribal affiliation or any other Tribal identifying information. The U.S. Constitution recognizes that Tribal nations are sovereign governments. As such, they have powers of self-government, upheld, repeatedly, by the U.S. Supreme Court. Tribal governments have the legal authority to administer the collection, ownership, application, and interpretation of their own data, even if it is collected by federal, state, or local governments. Tribal data means public or private facts, statistics or items of information on or about a Tribe or its people subject to tribal rights of ownership and control. This includes, but is not limited to, Tribe of membership, Tribe of affiliation, and identification of tribal facilities, entities, and enterprises. Tribal data means (1) data that is specific to an individual Tribe; or (2) data that is specific to more than one Tribe but does not identify individual Tribe(s)."

CDC Unified Comment: California Department of Public Health

  • Good Morning, The California Department of Public Health recommends adding the following data elements for the Patient Profile in exchange between EHRs:  
  • Patient Demographics: Expand to cover Social Determinants of Health  
  • § Number of Dependents
  • § Sexual Orientation
  • § Gender Identity
  • § Sex Assigned At Birth
  • § Gender of Sex Partners
  • § Preferred Language
  • § Country of Birth
  • § Last report of homelessness
  • § Last report of incarceration
  • § Last report of food insecurity
  • § Current occupation/occupation history
  • § Insurance Status

Add Veteran Status to Patient Demographic Data Class

ONC should add Veteran Status as a data element to this data class.  Such a step would help with care coordination across VA's network and private sector providers.  In addition, such information would be helpful at the point of care as clinicians reference social determinants of health data, and ensure that veterans are availing themselves of all the benefits that they are owed given their service to our nation.   For the past several years, the Department of Defense (DoD), Department of Veterans Affairs (VA), and ONC have collaborated to modernize our military and Veteran’s Electronic Health Record (EHR) system. Seamless integration of care and health data across DoD, VA, and the private sector is a key component of this effort. Information exchange is vital to improving the overall readiness for our military, while guaranteeing Service members and beneficiaries receive the quality care they deserve. In addition, ensuring alignment with nationally-recognized data standards, industry best practices, and continuity of care as our nation’s Service member’s transition to Veteran status is critical to the success of our nation’s DoD and VA’s EHR modernization efforts.  Moreover, appropriately leveraging USCDI makes certain this information is available and accessible for exchange and remains a key component of broader nationwide interoperability goals.  The latest data maintains that nearly six out of 10 Veterans receive some portion of their health care from private sector providers, making Veterans a strong business case for broader interoperability. Adding Veteran Status to USCDI will ensure that more information is available to appropriately treat Veterans, and allow our health system to better coordinate their goals, care plans, and benefits across the continuum of care. 

Log in or register to post comments