1. Family Voices of California Brown Bag Training Series December 2, 2009 Vivian H. Jackson, Ph.D. National Center for Cultural Competence Addressing the Multiple Issues in Collecting Race, Ethnicity and Language Data

2. The State of Affairs Forces for Change Demographics Disparities Quality Equity Barriers to Change Attitudes, Bias, Stereotypes, Isms Privilege Power Slide Source: © 2009 by National Center for Cultural Competence

3. Getting on the Same Page Slide Source: © 2009 by National Center for Cultural Competence

4. Definitions Race = 1. a local geographic or global human population distinguished as a more or less distinct group by genetically transmitted physical characteristics. 2. a class or kind of people unified by shared interests, habits, or characteristics (Merriam Webster) Race = is a socially defined construct used to categorize people by their physical characteristics (National Center for Cultural Competence Slide Source: © 2009 by National Center for Cultural Competence

5. Definitions Ethnic= of or relating to large groups of people classed according to common racial, national, tribal, religious, linguistic, or cultural origin or background (Merriam Webster) Ethnicity=ethnic affiliation or quality (Merriam Webster). Slide Source: © 2009 by National Center for Cultural Competence

6. Definitions Ethnicity = how one sees oneself and how one is “seen by others as part of a group on the basis of presumed ancestry and sharing a common destiny…” (The Institutes of Medicine) REL = Race, Ethnicity and Language (Institutes of Medicine) Slide Source: © 2009 by National Center for Cultural Competence

7. Cultural Competence requires organizations to: Have a defined set of values and principles, and demonstrate behaviors, attitudes, policies, and structures that enable them to work effectively cross-culturally Have the capacity to: Value diversity Conduct self-assessment Manage the dynamics of difference Acquire and institutionalize cultural knowledge Adapt to diversity and the cultural contexts of the communities they serve Incorporate the above in all aspects of policy making, administration, practice, and service delivery and systematically involve consumers, key stakeholders, and communities Slide Source: © 2009 by National Center for Cultural Competence

8. Moving from Theory to Action Slide Source: © 2009 by National Center for Cultural Competence http://www.nap.edu/catalog/1296.html

9. Why collect REL data? Valid and reliable data are fundamental building blocks for: (1) measuring quality of care/services (2) identifying differences or disparities in care/services (3) improving family-centered care (4) developing targeted interventions to improve the quality of care/services delivered to specific populations (5) planning engagement and outreach strategies (6) organizing quality improvement efforts (7) tracking progress over time Slide Source: © 2009 by National Center for Cultural Competence

10. Why collect REL data? National Reporting Requirements Office of Management and Budget (OMB) revised standards (1997) Health Insurance Portability and Accountability Act of 1996 Initiative to Eliminate Racial and Ethnic Disparities in Health (1998) Consumer Bill of Rights and Responsibilities (1997) Benefits Improvement and Protection Act (2000) Report of U.S. Commission on Civil Rights, The Health Care Challenge: Acknowledging Disparity, Confronting Discrimination, and Ensuring Equity (1999) Executive Orders 13166 "Improving Access to Services for Persons with Limited English Proficiency" and 13125 "Improving the Quality of Life of Asian Americans and Pacific Islanders" (2000) Data Source: Medstat and National Association of Health Data Organizations. "Nationwide Data Inventory of Statewide Encounter-Level Data Collection Activities." Report to the Agency for Healthcare Research and Quality (AHRQ). AHRQ Contract No. 290-00-0004. April, 2003. Slide Source: © 2009 by National Center for Cultural Competence

11. Why collect REL data? National Reporting Requirements Minority and Health Disparities Research and Education Act of 2000 Department of Health and Human Services Title VI Regulations (1964) Department of Health and Human Services Inclusion Policy (1997) Healthy People 2010 (2000) Culturally and Linguistically Appropriate Services (2000) HHS Data Council Activities (ongoing) National Committee on Vital Health Statistics (ongoing) Data Source: Medstat and National Association of Health Data Organizations. "Nationwide Data Inventory of Statewide Encounter-Level Data Collection Activities." Report to the Agency for Healthcare Research and Quality (AHRQ). AHRQ Contract No. 290-00-0004. April, 2003. Slide Source: © 2009 by National Center for Cultural Competence

12. Why collect REL data? State Reporting Requirements Currently 22 states require the reporting of race/ethnicity: Arizona California Connecticut Delaware Florida Georgia Louisiana Maryland Massachusetts Missouri New Hampshire New Jersey New Mexico New York Pennsylvania Rhode Island South Carolina Tennessee Texas Vermont Virginia Wiscons in Data Source: Medstat and National Association of Health Data Organizations. "Nationwide Data Inventory of Statewide Encounter-Level Data Collection Activities." Report to the Agency for Healthcare Research and Quality (AHRQ). AHRQ Contract No. 290-00-0004. April, 2003. Slide Source: © 2009 by National Center for Cultural Competence

13. Race Definitions Office of Management and Budget (OMB) American Indian or 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 or African American: A person having origins in any of the black racial groups of Africa. Native Hawaiian or Other Pacific Islander: A person having origins in any of the original peoples of Hawaii, Guam, Samoa, or other Pacific Islands. *OMB-Mod: This symbol indicates a modification we have made to the OMB recommendations. Data Source: © 2009 by the Health Research and Educational Trust Slide Source: © 2009 by National Center for Cultural Competence

14. Race Definitions OMB White: A person having origins in any of the original peoples of Europe, the Middle East, or North Africa. Some Other Race: A person who does not self-identify with any of the OMB race categories. *OMB-Mod Declined: A person who is unwilling to choose/provide a race category or cannot identify him/herself with one of the listed races. *OMB-Mod Unavailable: Select this category if the patient is unable to physically respond, there is no available family member or caregiver to respond for the patient, or if for any reason, the demographic portion of the medical record cannot be completed. Hospital systems may call this field “Unknown,” “Unable to complete,” or “Other.” *OMB-Mod *OMB-Mod: This symbol indicates a modification we have made to the OMB recommendations. Data Source:© 2009 by the Health Research and Educational Trust Slide Source: © 2009 by National Center for Cultural Competence

15. Ethnicity Definitions OMB Hispanic or Latino: A person of Cuban, Mexican, Puerto Rican, South or Central American, or other Spanish culture or origin, regardless of race. Non-Hispanic or Latino: Patient is not of Hispanic or Latino ethnicity. Declined: A person who is unwilling to provide an answer to the question of Hispanic or Latino ethnicity. *OMB-Mod Unavailable: Select this category if the patient is unable to physically respond, there is no available family member or caregiver to respond for the patient, or if for any reason, the demographic portion of the medical record cannot be completed. Hospital systems may call this field “Unknown”, “Unable to Complete,” or “Other.” *OMB-Mod *OMB-Mod: This symbol indicates a modification we have made to the OMB recommendations. Data Source:© 2009 by the Health Research and Educational Trust Slide Source: © 2009 by National Center for Cultural Competence

16. Definitions: Granular Ethnicity Granular Ethnicity= “a person’s ethnic origin or descent, roots, or heritage, or the place of birth of the person or the person’s parents or ancestors before arrival in the United States.” (Institutes of Medicine) Slide Source: © 2009 by National Center for Cultural Competence Reference: Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement, 2009

18. Definitions: Language Need Language Need= consists of 4 components: English ability-How well does a person speak English? How well does a person understand English? Encounter language- What language is needed for a health related encounter? Language usage- What language is spoken at home? Written language- What is the preferred language for written materials? Slide Source: © 2009 by National Center for Cultural Competence Reference: Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement, 2009

19. Rule of Thumb for Families Families are more likely to provide REL data when: They understand why the data is being requested They are able to self-identify to the fullest extent They feel secure that the information will not be used against them (denial of services, lesser services) They are assured that the information will be kept confidential with limited access Slide Source: © 2009 by National Center for Cultural Competence Reference: Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement, 2009

20. Rule of Thumb for Staff Staff are more likely to collect REL data when: They understand why the data is being requested They have a safe environment to discuss discomfort about collecting REL data They are trained in collecting this information They have a script to use that offers a uniform framework for asking and noting REL data Slide Source: © 2009 by National Center for Cultural Competence Reference: Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement, 2009

21. Uniform Framework Standardization Who provides the information Information should always be provided by the consumer, parent/care taker. It should never be done by observation, geo- mapping or audio appraisals alone. When to collect Collection should take place upon the first encounter (in person or via telephone). What racial and ethnic categories should be used Start with the U.S. Census or the Office of Management and Budget (OMB) categories. F2FHICs and other organizations can provide more granular categories (to use for internal purposes), but should be able to aggregate data back to the broader OMB categories for reporting purposes. Slide Source: © 2009 by National Center for Cultural Competence Reference: Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement, 2009

22. Uniform Framework Standardization Where should data be stored Data should be stored in a standard electronic format for easy linking to report formats. Family Concerns Concerns should be addressed up front and clearly, prior to obtaining information. Staff training Employers need to provide ongoing training and evaluation to staff. Slide Source: © 2009 by National Center for Cultural Competence Reference: Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement, 2009

24. Using OMB (modified) Categories Without Splitting Race/Ethnicity -African American/Black -Asian -Caucasian/White -Hispanic/Latino/White -Hispanic/Latino/Black -Hispanic/Latino/Declined -Native American -Native Hawaiian/Pacific Islander -Some Other Race -Declined -Unavailable/Unknown Data Source: © 2009 by the Health Research and Educational Trust Slide Source: © 2009 by National Center for Cultural Competence

25. Granular Ethnicity Since disparities can exist within OMB race and Hispanic ethnicity categories, the IOM subcommittee recommends a separate question to collect data on granular ethnicity. Individual organizations should select categories that represent their service population from a national list of standardized categories. The list should include an open-ended response option of “Other, please specify:__” for persons whose granular ethnicity is not included as a response option. Data Source:© 2009 by the Health Research and Educational Trust Slide Source: © 2009 by National Center for Cultural Competence

26. Practice Screens Guided Questions to obtain REL Data Slide Source: © 2009 by National Center for Cultural Competence

27. Ethnicity Screen Now I would like you to tell me your race and ethnic background. We use this information to review the treatment families receive and make sure everyone gets the highest quality of service. First, do you consider yourself Hispanic/Latino? Yes- _____________________________ No Declined Unavailable Data Source:© 2009 by the Health Research and Educational Trust Slide Source: © 2009 by National Center for Cultural Competence

28. Race Screen Which category best describes your race? American Indian/Alaska Native- ___________________________ Asian- ________________________________ Black/African American- __________________________ Native Hawaiian/Other Pacific Islander- _________________________ White- ________________________________ Some Other Race _____________________ Declined (This is a flag indicating that the individual did not want to answer this question—do not ask again during the same or subsequent visit.) Unavailable (This is a flag indicating that the person could not answer the question. May ask the person again.) Data Source:© 2009 by the Health Research and Educational Trust Slide Source: © 2009 by National Center for Cultural Competence

29. Granular Ethnicity Screen I would like you to describe your race or ethnic background. You can use specific terms such as Korean, Mexican, Haitian, Somali. Response Categories: Locally relevant list of categories selected from a national standard set Other, please specify:______________ OR Open-ended question with responses coded from a national standard set Data Source© 2009 by the Health Research and Educational Trust Slide Source: © 2009 by National Center for Cultural Competence

30. English Proficiency Screen How would you rate your ability to speak and understand English? Very Well Well Not Well Not at all Declined Unavailable Data Source:© 2009 by the Health Research and Educational Trust Slide Source: © 2009 by National Center for Cultural Competence

31. Primary Language What language do you feel most comfortable speaking with your doctor or nurse (patient’s primary language)? Provide a list of locally relevant language categories: Language categories should be selected from a national standard set such as that from the Census or the IOM report (available in the Toolkit section Collecting the Data—The Nuts and Bolts/Which Categories to Use/Language Categories). Local lists should provide an “Other, please specify:__________” option for individuals whose preferred language is not included. Data Source:© 2009 by the Health Research and Educational Trust Slide Source: © 2009 by National Center for Cultural Competence

32. Addressing Concerns from Families General rule of thumb: If a person does not want to answer these questions, move on. Do not force the issue. Simply record “Declined.” In some instances, people may have questions or may be confused. The following slides provide a sample of questions and responses. These are not meant to be exhaustive. You are the experts—modify as needed. Data Source:© 2009 by the Health Research and Educational Trust Slide Source: © 2009 by National Center for Cultural Competence

33. Handling the Responses from Families: Basic Guidelines Use common sense. Decide whether you will provide a list of categories (either Census or OMB) or whether you will let families self-report based on their own descriptions. Allow patients to respond and use as much of their own description as possible. Respect their descriptions (or choices if providing categories). Avoid words that might be considered confrontational. Data Source: © 2009 by the Health Research and Educational Trust Slide Source: © 2009 by National Center for Cultural Competence

34. Family Response Matrix - Routine Family ResponseSuggested ResponseHintsCode “I'm American." Would you like to use an additional term, or would you like me to just put American? American or others if specified "Can't you tell by looking at me?" Well, usually I can. But sometimes I'm wrong, so we think it is better to let people tell us. I don’t want to put in the wrong answer. I’m trained not to make any assumptions. If using open-ended option: "I don’t know. What are the responses? You can say White, Black or African American, Latino or Hispanic, Asian, American Indian or Alaska Native, Pacific Islander or Native Hawaiian, some other race, or any combination of these. You can also use more specific terms like Irish, Jamaican, Mexican "I was born in Nigeria, but I've really lived here all my life. What should I say?" That is really up to you. You can use any term you like. It is fine to say that you are Nigerian. It’s best not to ask for this information again.

35. Returning Family Family Member ResponseSuggested ResponseHintsCode A family returning for care with the “DECLINED” code.DO NOT ASK AGAIN A family returning for care with the “UNKOWN” or "Unable to provide information" code. Proceed to ask for the information per routine.

36. Tougher Questions These generally indicate DECLINED code. Family Member ResponseSuggested ResponseHintsCode "I m Human." Is that your way of saying that you don’t want to answer the question? If so, I can just say that you didn't want to answer. DON'T SAY - I'll just code as a declined.Declined "It's none of your Business." I'll just put down that you didn't want to answer, which is fine. DON'T SAY - I'll just code as a declined.Declined "Why do you care? We're all human beings." Well, many studies from around the country have shown that a family's race and ethnicity can influence the treatment they receive. We want to make sure this doesn't happen here, so we use this information to check and make sure that everyone gets the best care possible. If we find a problem, we fix it. If patient still refuses, DON'T SAY - I'll just code as a declined.Declined

37. Tougher Questions (cont’d) Family Member ResponseSuggested ResponseHintsCode " Are you saying that this has happened at _______?” We don’t know, but we want to make sure that all our patients get the best care possible. We are part of a national research study to help make sure that doesn’t happen. "Who looks at this?" The only people who see this information are intake/registration staff, administrators, and the people involved in quality improvement. "Are you trying to find out if I'm a US citizen?" No. Definitely not!! Also, you should know that the confidentiality of what you say is protected by law, and we do not share this information with anyone.

38. Code as “unknown or unable to answer” or add as a text response so you can track this information. Staff should flag this (e.g., record this information)—if this happens frequently, it may indicate a new category needs to be added to the coding scheme. What if the family member presents a race/ethnicity that’s not on the table? Data Source:© 2009 by the Health Research and Educational Trust Slide Source: © 2009 by National Center for Cultural Competence

40. T.D. Goode Cultural Competence Linguistic Competence Community Engagement Family Centered Care Literacy Partnerships between Families & Professionals INTEGRALLY LINKED Pieces of the Same Puzzle Slide Source: © 2009 by National Center for Cultural Competence

41. Cultural and linguistic competency are a life’s journey … not a destination Safe travels! T.D.Goode Slide Source: © 2009 by National Center for Cultural Competence