Collecting Race, Ethnicity & Preferred Language Data California Pan-Ethnic Health Network

1. Collecting Race, Ethnicity & Preferred Language DataCalifornia Pan-Ethnic Health Network Deborah Bohr, MPH September 29, 2008

2. Session Objectives • Rationale for collecting ethnicity, race and preferred language data (R/E/PL) • HRET approach and experience • Health Plan approaches • Resources

3. Why Collect R/E/PL Data? • U.S. population grew by 13% between 1990 and 2000. • Foreign-born population living in the U.S. increased by 44% during this same period (to 28.4 million persons). • In 2000, 10% of the U.S. population was foreign-born. • Over 300 different languages are spoken in the U.S. and nearly 47 million speak a language other than English at home.

4. Unequal Treatment: Understanding Racial and Ethnic Disparities in Health Care This 2002 IOM report specifically identified the need for health insurance companies to collect, report and monitor patient care data as one solution to eliminating racial and ethnic disparities in care

5. Why Collect These Data? Health plans need very accurate data to… • Provide the highest quality of care • Monitor quality of care outcomes to study how different population groups are faring in our plan • Be responsive to the diverse populations we serve and to be able to tailor programs and services to meet their needs (outreach, treatment, education, follow-up)

6. Why Collect These Data? • Comply with regulatory and accreditation agencies • Use data to obtain grant funds

7. What is Race? “ (Race) reflects self-identification by persons according to the race or races with which they most closely identify. These categories are sociopolitical constructs and should not be interpreted as being scientific or anthropological in nature. Furthermore, the race categories have both racial and national-group origins.”(Source: National Center for Education Statistics Institute of Education Services; http://nces.edu)

8. What is Ethnicity? • Ethnicity is a term which represents social groups with a shared history, sense of identity, geography, and cultural roots which may occur despite racial difference.

9. OMB Ethnicity & Race Categories • Ethnicity (asked first): • Hispanic or Latino • Not Hispanic or Latino

10. OMB Ethnicity & Race Categories • The OMB Race Categories are: • American Indian or Alaska Native • Asian • African American or Black • Native Hawaiian or Other Pacific Islander, and • White

11. OMB Ethnicity & Race Categories • The OMB Categories are not perfect. The race and ethnic categories were developed by the federal government to be able to monitor and help prevent discrimination in housing, education and other areas. • The U.S. Census uses these categories to track the rapidly changing demographics in the U.S.

12. HRET Categories • African American/Black • Asian • Caucasian/White • Hispanic/Latino/Black • Hispanic/Latino/White • Native American • Native Hawaiian/Pacific Islander • Multiracial

13. HRET Categories cont. • Declined • Unavailable

14. HRET Recommendations • When possible collect granular data on race and ethnicity that can be aggregated into the broader OMB categories. • The CDC has a hierarchical code set to support this.

15. English Proficiency • How would you rate your ability to speak English? • Excellent, very good, good, fair, poor? • Some hospitals collect these data via drop-down screens like race and ethnicity by registration or admitting staff

16. Language Preference Questions • What language do you feel most comfortable speaking? • In what language would you prefer to receive written materials? • For minors, ask these questions of parents or guardians • These data are recorded via drop-down screens like race and ethnicity by registration/admitting staff

17. Language Preference Tools • “I-Speak” cards and point-to posters help staff determine language preferences of LEP individuals (A Patient-centered Guide to Implementing Language Services Across Services in Healthcare Organizations, www.omhrc.gov/Assets/pdf/Checked/HC-LSIG.pdf)

18. Deaf and Hard of Hearing • Effective communication is equally important in this population; miscommunication can lead to misdiagnosis or delayed treatment. • Many can speak even though they cannot hear. • People who are deaf or hard of hearing use a variety of ways to communicate.

19. Deaf and Hard of Hearing • Hospitals must provide a variety of services and aids, depending on abilities of the person: • Sign language interpreters (various) • Oral interpreters • Cued speech interpreters • CART—Computer Assisted Real-time Transcription

20. HRET’s Experience with Collecting R/E/PL From Patients

23. General Guidelines • Explain why you are asking for this information • Do not “eyeball” or rely on a patient’s voice or accent. • Patients must state their race and ethnicity; you should not suggest a race or ethnicity. • Patients or family members or guardians must indicate preferred language. • Practice responding to potential patient responses.

24. Helpful Tools • Laminated cards containing R/E categories • “I-speak” cards or posters • Scripts for staff explaining why asking • Sample responses to FAQs

25. Explaining Why to the Patient • Sample scripts are provided in subsequent slides: • Community responsiveness • Quality of care • Cultural competence • A combination of the above

26. Community Responsiveness Rationale We want to know your race, ethnicity, and preferred language to help us develop services to meet the needs of all the populations we serve.

27. Quality of Care Rationale We want to make sure that all of our patients get the best possible care. We would like to ask you to tell us your race, ethnicity, and preferred language so that we can review the treatment that all patients receive and make sure that everyone gets the highest quality of care.

28. Cultural Competence Rationale We want to know the race, ethnicity and preferred language of each of our patients to help us provide care that is respectful of everyone’s cultural background.

29. Combination Rationale We would like to know your race, ethnicity and preferred language. This will help us in a couple of ways. It will help us… and … . (For example, it will help us provide care that respects your cultural background and will help ensure that we provide the most appropriate care and services to all our patients.)

30. Handling Patient Responses • Some patients will question why they are being asked for their ethnicity and race. • They will have questions and comments. • We want you to feel comfortable answering whatever questions patients ask.

31. Patient Response Matrix • The Patient Response Matrix is based on actual hospital patient responses and can be instructive to health plans. • The matrix is intended to be used as a tool to help staff handle various responses. • Staff will have their own examples to provide in training new personnel.

32. Patient Responses—Routine

33. Patient Responses—Routine Patient Response Suggested Response Hints Code “How will this information be used?” “Administrators will see these data and researchers may use non-patient identified data for their studies. No one else will see these data.” N/A I am more than one race—how many can I list.” “Many people are multi-racial and you can provide me with up to three races that you see on this card.” Up to 3 races  “Why isn’t Hispanic a race?” I am Latino/Latina/Puerto Rican “The federal government has designated Hispanic as an ethnicity. I will record Hispanic as your ethnicity. Do you also want to list as race, as described on this card?” Thank you.” Code Hispanic If patient declines to list a separate race, code Preferred Not to Answer in Race slot. Code Hispanic

34. Patient Responses—Routine Patient Response Suggested Response Hints Code What is ethnicity? Can you provide some examples? “Your nationality or heritage are what we mean by ethnicity. Please look at this card and see if any of these ethnicities apply to you. If not, please provide your ethnicity, for example, Irish, Jamaican, Mexican.” Use drop-down list on registration screen

35. Returning Patients with Incomplete Data

36. Tougher Questions

37. Top FAQs • Why are data being collected about race, ethnicity and language? • This information helps us understand the various patient populations we serve. We want to provide the best care to all our patients. • It is also required by agencies that oversee the care hospitals provide.

38. Top FAQs • How will data on race, ethnicity and language affect my care? • Your care will meet the highest patient care standards. Information about race and ethnicity will help us… this answer will depend on the rationale that the organization selects.

39. Top FAQs • I am an American citizen; why are race, ethnicity and preferred language being asked? • This information helps us to better understand our various patient populations, provide more culturally competent care, and comply with federal, state and accrediting agencies.

40. Top FAQs • What is the difference between race and ethnicity? • Race reflects self-identification by persons according to the race or races with which they most closely identify. Ethnicity is a term which represents social groups with a shared history, sense of identity, geography and cultural roots which may occur despite racial differences.

41. Top FAQs • Why aren’t more races listed? • A federal working group came up with the list to meet the needs of 30 very diverse federal agencies. The rationale was to have a relatively short list of races and to allow for a much greater list of ethnicities to recognize unique religious, cultural and geographic characteristics.

42. Top FAQs • What is the difference between “Hispanic” and “Latino?” • There is no difference. OMB accepts Hispanic or Latino, however, for ease of coding our organization has chosen Hispanic. If patient responds “Latino,” code as “Hispanic.”

43. Top FAQs • Why isn’t Hispanic a race? • The Federal government decided that some individuals of the White, Indian (North, Central and South American), and Black races would consider themselves Hispanic because they speak a common language (Spanish) and have a common cultural heritage or ethnicity. It was decided to consider Hispanic an ethnicity, rather than a race. However, many individuals will self-identify their race as Hispanic.

44. Top FAQs • Why is “Pakistani” considered Asian and not Middle Eastern? • There is no Middle Eastern race in order to limit the number of different races. This illustrates the importance of collecting ethnicity information as well as race information. Identifying “Pakistani” as the ethnicity tells us much more than “Asian” as a race.

45. Health Plan Methods • Direct Data Collection Methods • Primary Sources: enrollment, disease management programs, encounter, health plan direct outreach, member web portal, health risk assessments, member surveys • Secondary Sources: CMS, State (Medicaid), Insurance broker, Employer Source: National Health Plan Collaborative

46. Health Plan Methods • Indirect Data Collection Methods • Third-generation methods (2 plans) • Combined geo-coding/surname analysis (1 plan) • Geo-coding or surname analysis alone (none currently; 4 plans considering) Source: National Health Plan Collaborative

47. National Health Plan Collaborative • No single data collection method is sufficient • Enrollment process is easy way to collect R/E/PL data • Data collection through disease mgmt. programs captures few members

48. National Health Plan Collaborative • Staff education essential • Important to train staff to communicate why they are asking for R/E/PL data • Web portals allow for more granular data re members’ R/E/PL data, but biased results from differences in Internet access and use • Cost of adding R/E/PL data collection to outreach often minimal.

49. Aetna • Since 2002, more than 60 million members have provided R/E/PL information • In 2008, collected from 5 million or 30% of actively enrolled membership. Using these data Aetna has identified differences in quality of care measures across racial/ethnic groups and is developing culturally appropriate initiatives

50. Aetna • 2002: begins paper and electronic data collection • 2003: integrates R/E data captured in HRAs into member management systems • 2004: members who access their personal benefits information prompted to voluntarily provide R/E info; data protections in place • 2005: expanded to 47 state and DC • 2006: R/E/PL info may be updated at any point of contact; declines noted