Appendix G. Kaiser Permanente: Evolution of Data Collection on Race, Ethnicity, and Language Preference Information

Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement

Introduction

Kaiser Permanente is nationally recognized for its innovation and groundbreaking initiatives in health care. Over the years, we have continuously assessed the needs of our membership and public community, and proactively designed programs and solutions to meet the new challenges. Race, Ethnicity, and Language Data Collection underscores our commitment toward the elimination of health disparities and inequities for racial, ethnic, and linguistic groups.

Kaiser Permanente Policy

With the advocacy and leadership of our National Diversity Council, the Member Demographic Data Collection Initiative on Race, Ethnicity, and Language preference information became an organizational policy in 2004.

The objectives of the policy extend beyond collecting information for compliance reasons; it is intended to inform patient-centered care, culturally and linguistically competent care and services, and the elimination of health and health care disparities/inequities. Timely, valid, and representative data collection is essential to the provision of quality and equitable care.

Data Collection Improvement Process

As our commitment to continuous quality improvement, Kaiser Permanente National Diversity recommended several updates and modifications for KP HealthConnect, our electronic medical/health record system. These accepted recommendations are based on research and collaborative input from various stakeholders and constituents to improve Race, Ethnicity, and Language data collection.

During the initial phase of data collection, we utilized an approach that was common throughout the industry, which was to ask for the Office of Management and Budget (OMB) federal 'Race' and 'Ethnicity'* categories. We addressed the need to identify diverse subpopulations by also including a limited number of detailed groups.

At that juncture, our technical systems were not designed to house granular information separately on subpopulation groups, therefore, granular descriptions were coupled to the OMB federal standards to accommodate compliance and reporting needs.

During initial implementation, important concerns were raised, which included the following:

  • The need for more granular categories for ethnicity.
  • The feedback that Hispanic/Latino patients felt uncomfortable selecting 'Race' categories that they may not identify with.
  • The issue of coupling of federal standards to granular information did not allow for self-identification.

To address these concerns, in 2005, our National Diversity office undertook a comprehensive assessment, review, and analysis of industry collection standards, practices, and lessons learned as well as integrating notable work and contributions from the fields of public health, sociology, law, race relations, journalism, demography, and statistics.

During this assessment for quality improvement, collective discovery concluded that a new collection framework was needed. We explored and were able to identify technological innovations in our electronic medical/health record system that offered viable options in how the data fields and code sets could be built to accommodate the proposed changes.

We seized the opportunity to improve data collection by 1) further understanding the constructs of Race, Ethnicity, and Language as well as their intersections in-depth and 2) developing organizational structure, decision making processes, and guiding principles that would advance uniform, standardized, and systematic data collection.

Code Selection Process

The Race, Ethnicity, and Language Code Sets that were developed represent the first phase of Kaiser Permanente's Member Demographic Data Collection Initiative on Race, Ethnicity, and Language. Our Code Sets are open and responsive to accommodate preferred selfidentification as well as changes in national/international developments and demographic trends.

Granular Ethnicity

Kaiser Permanente examined the significance of ethnicity in the context of health, and concluded that the creation of a more encompassing definition of Ethnicity was needed. Granular Ethnicity would be able to capture patient data at a level that would inform beyond the limited federal standards to ensure timely, valid, and representative data collection.

The Code Sets are reviewed on an on-going basis primarily to ensure alignment with changing demographic trends in the United States as well as relevance in culturally and linguistically competent care and patient-centered care.

Ongoing Analysis and Review for Comparability (Selected Examples Provided)

National Data Sets and Resources

  • U.S. Decennial Census/American Community Survey
  • Yearbook of Immigration Statistics

Health Surveys and Research (Population or Region Specific)

  • California Health Interview Survey
  • National Latino and Asian American Study

Transnational and International Data Sets and Resources

  • United Nations Statistics Division
  • World Health Organization
Data Aggregation (Roll-Up)

Kaiser Permanente's collection framework is asking the two part question separately (Combined Format and Granular Ethnicity), thereby eliminating the need/use of automatic linkage and data aggregation (commonly known as "roll-up"). Data aggregation should be specific to the research and/or reporting needs for the population groups under study/report.

Automatic linkage or aggregation would produce deteriorated or inaccurate data if patients are linked/aggregated in a way that contradicts or misrepresents their personal selfidentification, especially for multiracial persons who identify with more than one federal 'Race'/'Ethnicity' standard.

The effects of globalization, population displacement, and social movements are undermining the capacity of one nation to fix a person's identity. Simply, national or geographic origin does not automatically determine one's race or ethnicity, nor does ethnicity determine race, nor does race determine ethnicity.

Data aggregation without the consideration of the intersecting layers that construct identity would be similar to suggesting that 'American' or being born in the United States could be automatically linked/aggregated into 'White'.

The Combined Format and Granular Ethnicity fields were developed as two separate questions to achieve health care, research, compliance, reporting, and resource allocation needs. As importantly, it ensures the patient's right to self-identify as well as ensures the highest data quality and integrity.

Language (Spoken and Written)

Kaiser Permanente focused on developing timely, valid, and representative language codes to capture our nation's increasing diversity. We are collecting both spoken and written language to ensure the provision of quality and equitable health care.

The Spoken/Written Language Code Sets are reviewed on an on-going basis primarily to ensure alignment with linguistic trends in the United States, current organizational language utilization, as well as relevance in culturally and linguistically competent care and patientcentered care.

Ongoing Analysis and Review for Comparability (Selected Examples Provided)

National Data Sets and Resources

  • U.S. Decennial Census/American Community Survey

Organizational Language Utility (Regional and National)

  • Vendor Utilization Data
  • Kaiser Permanente Utilization Data

Transnational and International Data Sets and Resources

  • International Organization for Standardization

Race, Ethnicity, and Language Code Sets

NOTES (Applies to all Code Sets):

'Decline to State', 'Other', and 'Unknown' are collection codes utilized by Kaiser Permanente.

Categories that represent one code in the collection system but have multiple names/designations are listed together and separated by a (/) slash mark.

Combined Format
Issued by the Office of Management and Budget

American Indian/Alaska Native
Asian
Black/African American
Hispanic/Latino
Native Hawaiian/Other Pacific Islander
White
Decline to State
Other
Unknown

The Combined Format is a multiple response field.

Granular Ethnicity

Acadian/Cajun
Afghan/Afghanistani
Agikuyu/Kikuyu
Akan
Alaska Athabascan
Albanian
Aleut
Algerian
Alsatian
Amara/Amhara
Amazigh/Imazighen/Berber
American/United States
Amerindian/Indigena/Indio
Antiguan/Barbudan
Apache
Arab/Arabic
Argentine/Argentinean
Armenian
Asian Indian/Indian (Asia)
Assyrian/Chaldean/Syriac
Australian
Austrian
Azerbaijani
Azeri
Bahamian
Bajan/Barbadian
Bamar/Burman
Bangladeshi
Bantu
Basque
Belarusian/Belorussian
Belgian
Belizean
Bengali
Blackfeet
Bolivian
Bosniak
Bosnian/Herzegovinian
Brazilian
British Isles/British Isles origin
British West Indian/Indies
Briton/British
Bulgarian
Burmese
Cambodian
Cameroonian/Cameroon
Canadian
Canadian American Indian
Cape Verdean
Carpatho Rusyn
Celtic
Central American Indian
Cherokee
Cheyenne
Chickasaw
Chilean
Chinese
Chippewa
Choctaw
Colombian
Colville
Comanche
Congolese/Congo
Costa Rican
Creek
Creole
Croat/Croatian
Crow
Cuban
Cypriot
Czech
Czechoslovakian
Dane/Danish
Delaware
Dominican
Dutch
Dutch West Indian/Indies
East Indian
Eastern Cherokee
Ecuadorian
Egyptian
Emirati/United Arab Emirates
English
Eritrean
Eskimo
Estonian
Ethiopian
Fijian
Filipino/Philippine
Finn/Finnish
Fleming/Flemish
French
French Canadian
Fulani/Hausa
Georgian
German
German Russian
Ghanaian/Ghanian
Greek
Grenadian
Guamanian/Chamorro
Guatemalan
Guyanese
Haitian
Hawaiian/Native Hawaiian
Hmong
Honduran
Hopi
Hungarian
Ibo/Igbo
Icelander
Indonesian
Inupiat Eskimo
Iranian
Iraqi
Irish
Iroquois
Israeli
Italian
Ivoirian/Ivory Coast
Jamaican
Japanese
Javanese/Java/Jawa
Jewish/Jew
Jordanian
Kazakh/Qazaq
Kazakhstani
Kenyan
Keres
Khmer
Kinh/Viet
Kiowa
Kittitian/Nevisian
Korean
Kurd/Kurdish
Kuwaiti
Lao Loum/Lowland Lao
Lao/Laotian
Latin American Indian
Latvian
Lebanese
Liberian
Libyan
Lithuanian
Lumbee
Luxemburger
Macedonian
Malay
Malaysian
Maltese
Maori
Mende
Mestizo
Mexican
Mexican American Indian
Mohawk
Moldovan/Moldavian
Montenegrin
Moroccan
Muscogee (Creek) Nation
Navajo
Nepalese/Nepali
New Zealander/New Zealand
Nicaraguan
Nigerian
Norwegian
Oglala Sioux
Okinawan
Oklahoma Choctaw
Oneida Nation of New York/Oneida
Oromo
Osage
Ottawa
Paiute
Pakistani
Palestinian
Panamanian
Paraguayan
Part Hawaiian
Pashtun/Pathan
Pennsylvania German
Persian
Peruvian
Pima
Pole/Polish
Portuguese
Potawatomi
Pueblo
Puerto Rican
Puget Sound Salish
Quechua
Romanian
Rosebud Sioux
Russian
Saint Lucian
Salvadoran
Samoan
San Carlos Apache
Saudi/Saudi Arabian
Sault Ste. Marie Chippewa
Scandinavian
Scotch-Irish
Scottish
Seminole
Seneca
Senegalese
Serb/Serbian
Shawnee
Shona
Shoshone
Sierra Leonean
Singaporean/Singapore
Sinhalese/Singhalese
Sioux
Slavic
Slovak
Slovene/Slovenian
Somali/Somalian
South African
South American Indian
Soviet/Soviet Union
Spaniard/Spanish
Spanish American Indian
Sri Lankan
Sudanese
Swede/Swedish
Swiss
Syrian
Tagalog
Tahitian
Taiwanese
Tanzanian
Temne/Temme/Themne
Teton Sioux
Thai
Tigrinya/Tigray/Tigraway
Tlingit
Tlingit-Haida
Togolese/Togo
Tohono O'Odham
Tongan
Trinidadian/Tobagonian
Tunisian
Turk/Turkish
Turtle Mountain Band/Turtle Mountain
U.S. Virgin Islander
Ugandan
Ukrainian
Uruguayan
Ute
Uzbek/Uzbeg
Uzbekistani
Venezuelan
Vietnamese
Welsh
West Indian
White Mountain Apache
Yakama
Yaqui
Yemeni
Yoruba
Yugoslavian
Yup'ik/Yupik Eskimo
Zimbabwean
Zuni
Decline to State
Other
Unknown

Currently, Granular Ethnicity is not available as a multiple response field for multiethnic persons. Request for IT change is underway.

Spoken Language
Abkhaz
Afar
Afrikaans
Akan
Albanian
Algonquin
American Sign Language
Amharic
Apachean/Apache
Arabic
Aramaic
Armenian
Assyrian Neo-Aramaic/Assyrian
Aymaran/Aymara
Aztec/Nahuatl
Bantu
Bashkir
Basque
Bengali
Bhojpuri
Bislama
Bosnian
Breton
Bulgarian
Burmese
Cantonese/Chinese, Yue
Catalan-Valencian-Balear
Cebuano
Chamorro
Chaochow/Chinese, Min Nan
Chaozhou/Chinese, Min Nan
Cherokee
Chuukese/Trukese
Corsican
Croatian
Cushitic/Cushite
Czech
Dakota
Danish
Dari, Zoroastrian/Dari
Dinka
Dutch
English
Esperanto
Farsi/Persian
Fijian
Filipino
Finnish
Formosan
French
French Creole
French, Cajun/Cajun
Fukienese/Chinese, Min Nan
Fula/Fulani
Fuzhou/Chinese, Min Dong
Gaelic, Irish/Irish Gaelic
Georgian
German
German, Pennsylvania/Pennsylvania Dutch
Greek
Gujarati/Gujarathi
Guranai
Haitian Creole French/Haitian Creole
Hakka/Chinese, Hakka
Hawaiian
Hebrew
Hindi
Hmongic/Hmong
Hmong-Mien/Miao-Yao
Huizhou/Chinese, Huizhou
Hungarian
Igbo/Ibo
Ilocano
Indonesian
Inuktitut, Greenlandic
Italian
Iu Mien/Mien
Jamaican Creole English/Jamaican Creole
Japanese
Kannada
Kashmiri
Keres
Korean
Kru
Kurdish
Kusaiean/Kosraean
Ladino
Languedocien/Occitan
Lao/Laotian
Latvian/Lettish
Lingala
Lithuanian
Macedonian
Malay
Malayalam
Mandarin/Chinese, Mandarin
Mande
Marathi
Marshallese
Maya, Yucatan/Yucateco
Micronesian
Mixteco
Mongolian Proper/Mongolian
Mon-Khmer/Khmer
Navajo
Nepali
Norwegian
Oriya
Oromo
Palauan/Palau
Pampangan/Pampango
Panjabi
Pashto
Patois
Pohnpeian
Polish
Portuguese
Provencal
Punjabi
Quechuan/Quechua
Romanian/Moldavian
Rundi/Kirundi
Russian
Rwanda/Kinyarwanda
Samoan
Sango/Sangho
Serbian
Shanghainese/Chinese, Wu
Shona
Sign Language (Other)
Sinhala/Sinhalese
Slovak
Somali
Songhai/Songhay
Soninke
Sorbian, Lower/Lusatian
Sorbian, Upper
Sotho, Southern/Sesotho
Spanish
Swahili/Kiswahili
Swedish
Tagalog
Taiwanese/Chinese, Min Nan
Tamil
Tatar
Telugu
Thai
Tibetan
Tigrigna/Tigrinya
Toishanese/Chinese, Yue
Tonga/Western Nyasa
Tongan
Tsimshian
Tsonga
Tswana/Setswana
Tupi-Guarani/Guarani
Turkish
Turkmen
Twi (Akan)
Ukrainian
Urdu
Vietnamese
Vlaams/Flemish
Wolof
Xhosa
Yapese
Yi, Sichuan/Szechuan
Yiddish
Yoruba
Zulu
Do Not Speak
Decline to State
Other
Unknown

Spoken Language is a multiple response field.

Written Language

Abkhaz
Afar
Afrikaans
Akan
Albanian
Algonquin
Amharic
Apachean/Apache
Arabic
Aramaic
Armenian
Assyrian Neo-Aramaic/Assyrian
Aymaran/Aymara
Aztec/Nahuatl
Bantu
Bashkir
Basque
Bengali
Bhojpuri
Bislama
Bosnian
Braille
Breton
Bulgarian
Burmese
Catalan-Valencian-Balear
Cebuano
Chamorro
Cherokee
Chinese, Simplified
Chinese, Traditional
Chuukese/Trukese
Corsican
Croatian
Cushitic/Cushite
Czech
Dakota
Danish
Dari, Zoroastrian/Dari
Dinka
Dutch
English
Esperanto
Farsi/Persian
Fijian
Filipino
Finnish
Formosan
French
French Creole
French, Cajun/Cajun
Fula/Fulani
Gaelic, Irish/Irish Gaelic
Georgian
German
German, Pennsylvania/Pennsylvania Dutch
Greek
Gujarati/Gujarathi
Guranai
Haitian Creole French/Haitian Creole
Hawaiian
Hebrew
Hindi
Hmongic/Hmong
Hmong-Mien/Miao-Yao
Hungarian
Igbo/Ibo
Ilocano
Indonesian
Inuktitut, Greenlandic
Italian
Iu Mien/Mien
Jamaican Creole English/Jamaican Creole
Japanese
Kannada
Kashmiri
Keres
Korean
Kru
Kurdish
Kusaiean/Kosraean
Languedocien/Occitan
Lao/Laotian
Latvian/Lettish
Lingala
Lithuanian
Macedonian
Malay
Malayalam
Mande
Marathi
Marshallese
Maya, Yucatan/Yucateco
Micronesian
Mixteco
Mongolian Proper/Mongolian
Mon-Khmer/Khmer
Navajo
Nepali
Norwegian, Bokmal/Bokmal
Norwegian, Nynorsk/Nynorsk
Oriya
Oromo
Palauan/Palau
Pampangan/Pampango
Panjabi
Pashto
Patois
Pohnpeian
Polish
Portuguese
Provencal
Punjabi
Quechuan/Quechua
Romanian/Moldavian
Rundi/Kirundi
Russian
Rwanda/Kinyarwanda
Samoan
Sango/Sangho
Serbian
Shona
Sinhala/Sinhalese
Slovak
Somali
Songhai/Songhay
Soninke
Sorbian, Lower/Lusatian
Sorbian, Upper
Sotho, Southern/Sesotho
Spanish
Swahili/Kiswahili
Swedish
Tagalog
Tamil
Tatar
Telugu
Thai
Tibetan
Tigrigna/Tigrinya
Tonga/Western Nyasa
Tongan
Tsimshian
Tsonga
Tswana/Setswana
Tupi-Guarani/Guarani
Turkish
Turkmen
Twi (Akan)
Ukrainian
Urdu
Vietnamese
Vlaams/Flemish
Wolof
Xhosa
Yapese
Yiddish
Yoruba
Zulu
Do Not Read/Write
Decline to State
Other
Unknown

Written Language is a multiple response field.

For more information, please contact:

Gayle Tang, RN, MSN
Director, National Linguistic & Cultural Programs
National Diversity, Kaiser Permanente
One Kaiser Plaza, 17 Lakeside
Oakland, CA 94612
E-mail: Gayle.Tang@kp.org
Phone: 510-271-6828

 

* 'Race' in quotes refers to the federal OMB defined race standards. 'Ethnicity' in quotes refers to the federally defined OMB ethnicity standards.

Page last reviewed March 2010
Internet Citation: Appendix G. Kaiser Permanente: Evolution of Data Collection on Race, Ethnicity, and Language Preference Information: Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement. March 2010. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/research/findings/final-reports/iomracereport/reldataapg.html