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



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Appendix G Kaiser Permanente: Evolution of Data Collection on Race, Ethnicity, and Language Preference Information 201

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202 RACE, ETHNICITY, AND LANGUAGE DATA Evolution of Data Collection on Race, Ethnicity, and Language Preference Information June, 2009 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 sub- populations 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 * ‘Race’ in quotes refers to the federal OMB defined race standards. ‘Ethnicity’ in quotes refers to the federally defined OMB ethnicity standards. © Copyright 2009, Kaiser Foundation Health Plan, Inc. Page 1

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20 APPENDIX G Evolution of Data Collection on Race, Ethnicity, and Language Preference Information June, 2009 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 self- identification 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 © Copyright 2009, Kaiser Foundation Health Plan, Inc. Page 2

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204 RACE, ETHNICITY, AND LANGUAGE DATA Evolution of Data Collection on Race, Ethnicity, and Language Preference Information June, 2009 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 self- identification, 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 patient- centered 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 © Copyright 2009, Kaiser Foundation Health Plan, Inc. Page 3

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20 APPENDIX G Evolution of Data Collection on Race, Ethnicity, and Language Preference Information June, 2009 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. © Copyright 2009, Kaiser Foundation Health Plan, Inc. Page 4

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206 RACE, ETHNICITY, AND LANGUAGE DATA Evolution of Data Collection on Race, Ethnicity, and Language Preference Information June, 2009 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 © Copyright 2009, Kaiser Foundation Health Plan, Inc. Page 5

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20 APPENDIX G Evolution of Data Collection on Race, Ethnicity, and Language Preference Information June, 2009 Granular Ethnicity (cont’d) 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 © Copyright 2009, Kaiser Foundation Health Plan, Inc. Page 6

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20 RACE, ETHNICITY, AND LANGUAGE DATA Evolution of Data Collection on Race, Ethnicity, and Language Preference Information June, 2009 Granular Ethnicity (cont’d) 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 © Copyright 2009, Kaiser Foundation Health Plan, Inc. Page 7

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209 APPENDIX G Evolution of Data Collection on Race, Ethnicity, and Language Preference Information June, 2009 Granular Ethnicity (cont’d) 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 © Copyright 2009, Kaiser Foundation Health Plan, Inc. Page 8

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210 RACE, ETHNICITY, AND LANGUAGE DATA Evolution of Data Collection on Race, Ethnicity, and Language Preference Information June, 2009 Granular Ethnicity (cont’d) 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 © Copyright 2009, Kaiser Foundation Health Plan, Inc. Page 9

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211 APPENDIX G Evolution of Data Collection on Race, Ethnicity, and Language Preference Information June, 2009 Granular Ethnicity (cont’d) 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. © Copyright 2009, Kaiser Foundation Health Plan, Inc. Page 10

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212 RACE, ETHNICITY, AND LANGUAGE DATA Evolution of Data Collection on Race, Ethnicity, and Language Preference Information June, 2009 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 © Copyright 2009, Kaiser Foundation Health Plan, Inc. Page 11

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21 APPENDIX G Evolution of Data Collection on Race, Ethnicity, and Language Preference Information June, 2009 Spoken Language (cont’d) 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 © Copyright 2009, Kaiser Foundation Health Plan, Inc. Page 12

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214 RACE, ETHNICITY, AND LANGUAGE DATA Evolution of Data Collection on Race, Ethnicity, and Language Preference Information June, 2009 Spoken Language (cont’d) 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 © Copyright 2009, Kaiser Foundation Health Plan, Inc. Page 13

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21 APPENDIX G Evolution of Data Collection on Race, Ethnicity, and Language Preference Information June, 2009 Spoken Language (cont’d) 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. © Copyright 2009, Kaiser Foundation Health Plan, Inc. Page 14

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216 RACE, ETHNICITY, AND LANGUAGE DATA Evolution of Data Collection on Race, Ethnicity, and Language Preference Information June, 2009 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 © Copyright 2009, Kaiser Foundation Health Plan, Inc. Page 15

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21 APPENDIX G Evolution of Data Collection on Race, Ethnicity, and Language Preference Information June, 2009 Written Language (cont’d) 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 © Copyright 2009, Kaiser Foundation Health Plan, Inc. Page 16

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21 RACE, ETHNICITY, AND LANGUAGE DATA Evolution of Data Collection on Race, Ethnicity, and Language Preference Information June, 2009 Written Language (cont’d) 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 © Copyright 2009, Kaiser Foundation Health Plan, Inc. Page 17

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219 APPENDIX G Evolution of Data Collection on Race, Ethnicity, and Language Preference Information June, 2009 Written Language (cont’d) 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 Email: Gayle.Tang@kp.org Phone: 510-271-6828 © Copyright 2009, Kaiser Foundation Health Plan, Inc. Page 18

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