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A toolkit for collecting race, ethnicity, and primary language information from patients.
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Collecting the Data - The Nuts and Bolts

Which Categories to Use

Provided below are the PPACA requirements and CDC Race and Ethnicity Code Sets (granular categories that can be rolled up into the PPACA-recommended OMB categories for reporting or research purposes). As indicated, hospitals can choose to present patients/enrollees with a list of either broad or granular categories allowing patients/enrollees to self-identify their racial/ethnic background.

Look to the blue Links column to the right for helpful resources.


 

Broad Categories (OBM)

PPACA Standards (2011)

The passage of the PPACA includes requirements on the enhanced collection and reporting of data on race, ethnicity, sex, primary language, disability status. For detailed information about the PPACA standards, go here.

The PPACA revised standards includes separate race and ethnicity questions. See below for specific PPACA recommendations.

First ask questions about ethnicity.

PPACA Ethnicity

  • Hispanic or Latino or Spanish: AA person of Chicano, Cuban, Mexican, Mexican American, Puerto Rican, or another Hispanic, Latino, or Spanish culture or origin.
  • Not Hispanic, Latino or Spanish origin.

PPACA Minimum Race Designations According to OMB definitions. While the collection of granular race/ethnicity information is preferable, this information should at a minimum be collected in accordance with the broad OMB standards below:

  • American Indian/Alaska Native: : A person having origins in any of the original peoples of North and South America (including Central America), and who maintains tribal affiliation or community attachment.
  • Asian: A person having origins in any of the original peoples of the Far East, Southeast Asia, or the Indian subcontinent including, for example, Cambodia, China, India, Japan, Korea, Malaysia, Pakistan, the Philippine Islands, Thailand, and Vietnam.
  • Black/African American: A person having origins in any of the black racial groups of Africa. Terms such as "Haitian," "Dominican," or "Somali" can be used in addition to "Black or African American."
  • Native Hawaiian/Other Pacific Islander: A person having origins in any of the original peoples of Hawaii, Guam, Samoa, or other Pacific Islands.
  • White: A person having origins in any of the original peoples of Europe, the Middle East, or North Africa.

Our recommended modifications to PPACA requirements include adding the following categories:

  • Some Other Race: (This category replaces the "Multiracial" category in the previous version of the toolkit. It provides a response option for those Hispanics and others who do not relate to the current OMB race categories.)
  • Declined: (This category is an indication that the person did NOT want to respond to the question and should not be asked again during the same visit or during a subsequent visit.)
  • Unavailable: (This category is an indication that the person could not respond to the question and can be asked again during the same visit or during a subsequent visit.)

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Rolling Up Granular Categories into Broad Categories

Field research by HRET has shown that some health care organizations have only one field (for race) and do not have a separate field for ethnicity. Although collapsing data should be avoided, in cases where the collection of race, ethnicity and granular ethnicity is not captured you should follow the IOM (2009) recommendations for granular ethnicity.

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Granular Categories

In addition to collecting data in the PPACA race and ethnicity categories, organizations should also collect granular ethnicity data using categories that are representative of the population served. The IOM Subcommittee on Standardized Collection of Race/Ethnicity Data for Healthcare Quality Improvement recommends that granular ethnicity categories should be selected from a national standard set based on ancestry (e.g., Centers for Disease Control and Prevention [CDC]/Health Level 7 [HL7] Race and Ethnicity Code Set 1.0).

Not all organizations collecting granular ethnicity data will need to include the entire national standard set of categories in their databases or on their data collection instruments. Rather, organizations should select categories from the set that are applicable to their service population. Whenever a limited list of categories is offered to respondents, the list should include an open-ended response option of "Other, please specify:__" so that each individual who desires to do so can self-identify.

When respondents do not self-identify as one of the PPACA race or ethnicity categories and provide only a granular ethnicity response, a process for rolling the granular ethnicity categories up to the PPACA categories should be used. Ethnicities that do not correspond to a single PPACA race category should be categorized as "no determinate OMB classification".

Centers for Disease Control Race and Ethnicity

Code Set

The U.S. Centers for Disease Control and Prevention (CDC) have prepared a code set for use in coding race and ethnicity data. This code set is based on current federal standards for classifying data on race and ethnicity, specifically the minimum race and ethnicity categories defined by the OMB described above and a more detailed set of race and ethnicity categories maintained by the U.S. Bureau of the Census. The code set can be applied in both electronic and paper-based record systems.

Within the table, each race and ethnicity concept is assigned a unique identifier, which can be used in electronic interchange of race and ethnicity data. The hierarchical code is an alphanumeric code that places each discrete concept in a hierarchical position with reference to other related concepts. For example, Costa Rican, Guatemalan, and Honduran are all ethnicity concepts whose hierarchical codes place them at the same level relative to the concept Central American, which is the same hierarchical level as Spaniard within the broader concept Hispanic or Latino.

In contrast to the unique identifier, the hierarchical code can change over time to accommodate the insertion of new concepts. For more information, see the two links below.

Granular Code Set I (PDF)
Granular Code Set II (PPT)

IOM Subcommittee Proposed Template of Granular Ethnicity Categories

The IOM subcommittee has also created a template listing granular ethnicity categories from multiple sources including the CDC/HL7 list. Some of the granular ethnicities included in the template have already been assigned permanent five-digit unique numerical codes by CDC/HL7. Others still require permanent five-digit unique numerical codes.

IOM Subcommittee Template of Granular Ethnicity Categories (Table E-1 in Appendix E of IOM Report)

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Language Categories

To simplify the collection of language data, most organizations should develop a list of common languages used by their service population, accompanied by an open-ended response option for those whose language does not appear on the list.

Locally relevant language categories should be selected from a national standard set such as that available from the Census list or IOM report. A sample list is as follows:

  • Arabic
  • Armenian
  • Chinese
  • French
  • French Creole
  • German
  • Greek
  • Gujarathi
  • Hebrew
  • Hindi
  • Hungarian
  • Italian
  • Japanese
  • Korean
  • Laotian
  • Miao Hmong
  • Mon-Khmer Cambodian
  • Other native North American languages
  • Persian
  • Polish
  • Portuguese
  • Portuguese Creole
  • Russian
  • Scandinavian languages
  • Serbo-Croatian
  • Spanish
  • Tagalog
  • Thai
  • Urdu
  • Vietnamese
  • Yiddish
  • Availability of Sign Language or other auxiliary aids or services
  • Other, please specify:___
  • Do not know
  • Unavailable/Unknown
  • Declined

IOM Subcommittee Template of Spoken Language Categories and Coding (Table I-1 in Appendix I of IOM Report)

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