1. Do You Speak the Other Guys Language: Culture, Diversity and the Bottom Line Dr. Paul Mendis,M.D., Chief Medical Officer Neighborhood Health Plan Boston, MA Shani A. Dowd, B.A., L.C.S.W. Dir., Clinical Cultural Competency Training Harvard Pilgrim Health Care Boston, MA

2. © Harvard Pilgrim Health Care, Inc US Population by Race/Ethnicity 2000

3. © Harvard Pilgrim Health Care, Inc Racial and Ethnic Distribution of the Population of the US: Projected 2030 Bureau of the Census, Statistical Abstract of the U.S. 1997.

4. © Harvard Pilgrim Health Care, Inc Leading Causes of Death, by Race and Ethnic Group, 1996 Rank White, non- Hispanic African American Latino Native American Asian American Cause of Death 1 Heart Disease Heart Disease Heart Disease Heart Disease Heart Disease 2 Cancer CVD Chronic lung Disease AUI 3 4 5 Cancer CVDAUI CVD HIV/AIDSCVDDiabetesAUI HIV/AIDSCVD Pneumonia and Influenza AUI =accidents and unintentional injuries CVD=cerebrovascular disease (stroke, etc.) Source: DHHS, Health, United States,1998

5. © Harvard Pilgrim Health Care, Inc Health Care Disparities: Asthma 7% of all children in US have asthma African American children are: twice as likely to have asthma Three times more likely to be hospitalized with asthma six times more likely to die from asthma Source: Kaiser Family Foundation www.kff.org

6. © Harvard Pilgrim Health Care, Inc Health Care Disparities: Asthma Among Latinos, asthma prevalence varies by ethnicity: Puerto Ricans have the highest rates: 11% Mexican American children have the lowest rates among Latinos: 3% Kaiser Family Foundation www.kff.org

7. © Harvard Pilgrim Health Care, Inc Health Status While 16% of white Americans self-report indicated that they believed they were in only fair or poor health, : % of Asians reporting fair or poor health 40% of Vietnamese 29% Korean Americans 11% of Chinese Kaiser Family Foundation www.kff.org

8. © Harvard Pilgrim Health Care, Inc Chronic or Poor Health: 51% of all African Americans have been diagnosed with at least one of the following within the past 5 years: Asthma Cancer Heart Disease Diabetes High Blood Pressure Obesity Anxiety/depression Source: Commonwealth Fund

9. © Harvard Pilgrim Health Care, Inc Health Care Disparities: HIV/AIDS Treatment African Americans are twice as likely as whites to NOT receive triple drug antiviral therapies. African Americans are 1.5 as likely to not get prophylaxis for PCP Latinos are 1.5 times as likely as whites to NOT get triple drug antiviral therapies Kaiser Family Foundation www.kff.org

10. © Harvard Pilgrim Health Care, Inc Racial/Ethnic Disparities in Health: Diabetes Outcomes

11. © Harvard Pilgrim Health Care, Inc Health Care Disparities: Treatment for Cardiac Care Among Medicare Beneficiaries: African Americans are 60% LESS likely than whites to received heart bypass surgery, even when controlled for income, insurance status and place of treatment Kaiser Family Foundation www.kff.org

12. © Harvard Pilgrim Health Care, Inc Racial/Ethnic Disparities in Health: Cardiovascular Procedures Differential use based on race of: Cardiac catherization and angioplasty (Harris et al, Ayanian et al.) Coronary artery bypass graft (Peterson et al.) Treatment of chest pain (Johnson et al.) Referral to cardiology specialist care (Schulman et al.)

13. © Harvard Pilgrim Health Care, Inc Life Expectancy (in years) at birth and by race and sex, United States, 1998 Source: Health United States, 2000. Bureau of Primary Health Care

14. © Harvard Pilgrim Health Care, Inc 10 Health Conditions with Greatest Disparities Between Whites and Members of Ethnic Communities COPD Cancer Cardiovascular Disease Infant Mortality Rates Diabetes HIV/AIDS Child and Adult Immunizations Pneumonia Stroke Tuberculosis

15. © Harvard Pilgrim Health Care, Inc Percentage of Adults Reporting Problems with Communication with MD 33% of all Latinos 27% of all Asians 23% of all African Americans 16% of all white, non-Latinos Source: Commonwealth Fund (www.cwf.org)

16. © Harvard Pilgrim Health Care, Inc Communication Problems with MD Of those reporting problems, one or more of the following were reported: MD did not listen to everything that pt. said Patient did not fully understand MD Had questions but did not feel comfortable asking Source: Commonwealth Fund www.cwf.org

17. © Harvard Pilgrim Health Care, Inc Latinos Reporting Communication Problems 43% report Spanish as their primary language 26% report English as their primary language. Source: Commonwealth Fund \\www.cwf.org

18. © Harvard Pilgrim Health Care, Inc Patient Satisfaction Patient satisfaction increases when clinician uses psychosocially- oriented interview Psychosocially oriented interview was LEAST frequently used Perception among physician that takes more time BUT: Study found that psychosocial interview did not significantly increase time of the clinical encounter Roter,DL, Stewart, M., Putnam, SM, Lipkin, M, Stile, W. & Inui, T (1997) Communication patterns of primary care physicians. Journal of the Amer. Med. Assoc., 277(4):350-56.

19. © Harvard Pilgrim Health Care, Inc Malpractice and Physician-Patient Communication Specific communication problems were identified in a sample of malpractice claims. Physicians with no claims against them were more likely to: orient patients to the process of the visit use facilitative statements more, e.g. Go on, tell me more ask patients opinions about their medical problems use humor, indicated warmth and friendliness Levinson, WL, Roter, DL, Mullooly, JP, et al. (1997) Physician -patient communication: The relationship with malpractice claims among primary care physicians and surgeons. JAMA, 277:553-559.

20. © Harvard Pilgrim Health Care, Inc Malpractice and Physician-Patient Communication Four problematic themes emerged when plaintiffs depositions were reviewed: Deserting the patient32% Devaluing the patient or family views29% Delivering information poorly26% Failing to understand the patient and/or family perspective13% Beckman, HB, Markakis, KM, Suchman, AL and Frankel, RM. (1994) The Doctor Patient Relationship and malpractice: Lessons from Plaintiff Depositions. Arch. Internal Med., 154: 1365-1370.

21. © Harvard Pilgrim Health Care, Inc Malpractice and Physician-Patient Communication While 1% of hospitalized patients suffer a significant injury due to negligence, fewer than 2% of these patients initiate a malpractice claim. Patient dissatisfaction is the key element in the decision to initiate a malpractice claim. Levinson, WL, Roter, DL, Mullooly, JP, et al. (1997) Physician -patient communication: The relationship with malpractice claims among primary care physicians and surgeons. JAMA, 277:553-559.

22. © Harvard Pilgrim Health Care, Inc The New Millennium (Health Care Environment) Health care entities are fewer in number, but larger & more complex in size, product offerings & geography E-Health will play an increasingly important role in health care industry Loyalty to skill/profession, work group, colleagues is shifting for many providers Rapid change (revolutionary)

23. © Harvard Pilgrim Health Care, Inc Motivations for Addressing Cultural Issues in Health Care in the United States Changing demographics Increasing globalization of US economy Rising advocacy of health care consumers Increasing regulatory requirements Continuing documentation of inequities in access to health care and health care information and in health outcomes

24. © Harvard Pilgrim Health Care, Inc Meeting Regulatory and Accreditation Guidelines NCQA JCAHO Office of Minority Health Department of Medical Assistance Employer Request for Proposals Licensure Requirements

25. © Harvard Pilgrim Health Care, Inc Meeting Regulatory and Accreditation Guidelines Physicians and hospitals who wish to participate in federally funded medical programs, specific requirements are articulated in the language of the contract relating to cultural issues, such as linguistic access: Balanced Budget Act of 1997 Medicare Medicaid

26. © Harvard Pilgrim Health Care, Inc Commercial Insurers Increasingly, large employer groups are finding that their workforces are increasingly diverse in languages spoken ethnic cultures racial groups religious groups gender disabilities

27. © Harvard Pilgrim Health Care, Inc What is Cultural Competence? It is the ability to deliver effective medical care to people from different cultures. By understanding, valuing and incorporating the cultural differences of Americas diverse population and examining ones own health-related values and beliefs, health providers deliver more effective and cost-efficient care.

28. © Harvard Pilgrim Health Care, Inc What is Cultural Competence? …the demonstrated awareness and integration of three population-specific issues: health-related beliefs and cultural values, disease incidence and prevalence, and treatment efficacy. Risa Lavisso-Mourey, MD, MBA & Elizabeth Mackenzie, PhD

29. © Harvard Pilgrim Health Care, Inc Diversity and Its Stumbling Blocks Literacy and Language Class-related values Culture related values Communication Stereotypes Racism Ethnocentricity Charles, L.T. & Kennedy, D.B. (2000) Social and Cultural Influences on Health. (www.pitt.edu/~super1/lecture )

30. © Harvard Pilgrim Health Care, Inc Patient Cultural Factors These factors are shown to facilitate immigrants positive adjustment to medical care in the US: A relatively high level of formal education Greater generational removal from immigrant status Low degree of encapsulation within an ethnic and family social network Experiences with medical services that incorporate patient education

31. © Harvard Pilgrim Health Care, Inc Facilitating Cultural Factors (Contd) Previous experience with particular diseases in the immediate family Immigration to host culture at an early age. Urban, as opposed to rural origin. Limited migration back and forth to the home culture. Harwood, A. (1981) Ethnicity and Medical Care. Cambridge, MA: Harvard Univ. Press.

32. © Harvard Pilgrim Health Care, Inc Literacy 40 to 44 million adult Americans are functionally illiterate 50 million have only marginal literacy skills 72 million cannot read technical reports or news magazines Charles, L.T. & Kennedy, D.B. (2000) Social and Cultural Influences on Health. (www.pitt.edu/~super1/lecture )

33. © Harvard Pilgrim Health Care, Inc Literacy One-half of the adult population of the U.S. has basic literacy deficits: 21-23% read no more than 4th grade level Unable to read newspaper, follow written instructions 25-28% of adult Americans read at about 8th grade level Greatest number of low-literate adults are native born whites. Charles, L.T. & Kennedy, D.B. (2000) Social and Cultural Influences on Health. (www.pitt.edu/~super1/lecture )

34. © Harvard Pilgrim Health Care, Inc Written Medical Material Literacy levels vary enormously across class, gender and age. Bilingual people often have widely different literacy levels in the languages they speak Literate readers may encounter difficulty translating diagrams which inevitably make use of culturally normal visual concepts

35. © Harvard Pilgrim Health Care, Inc Literacy and Gender Among the Sudanese over 15 years of age: 34.6% of all females are literate 57.7% of all males are literate Among the Congolese, over 15 years of age: 67.2% of all females are literate 83.1% of all males

36. © Harvard Pilgrim Health Care, Inc Written Medical Information Speakers of the same language may vary in idiomatic language use based on gender, age, nationality and class. How the information is dispersed may signal authenticity in a given culture.

37. © Harvard Pilgrim Health Care, Inc Written Medical Material Literate readers may encounter difficulty translating diagrams which inevitably make use of culturally normal abbreviations. Readers may have cultural barriers to receiving certain kinds of information in writing, or in possessing certain kinds of written information.

38. © Harvard Pilgrim Health Care, Inc Developing Written Materials in Languages other than English Do not assume that highly educated bi-lingual staff, including physicians, are as literate in their firsat language as they are in English. Do research (focus groups) to determine which dialects should be used. Use simple language, and where possible, easy to communicate basic concepts. All literature must be back translated.

39. © Harvard Pilgrim Health Care, Inc Back Translation Material is translated from English to target language and target dialect. Independent translator who speaks target language and target dialect translates document back to English. Independent translator re-translates document. Translation errors are corrected and errors in idiomatic expression are corrected.

40. © Harvard Pilgrim Health Care, Inc Translation of Clinical Condition: Rheumatoid Arthritis English: Rheumatoid arthritis can be acute or chronic. Acute rheumatoid arthritis is more common during adolescence. The cause is believed to be due to an over-sensitive reaction of the joints to the Beta Hemolytic Streptococcus. The most common sites of infection are the throat and tonsil. English to Chinese to English: Wet Wind Style Joint inflammation has fast and slow type. The fast type sees more at small year time. The reason for its up believes to be the joints over-sensitive reaction to the blood-dissolving chain-ball bacteria. And the affecting path is most frequently the swallow tube and the flat- peach gland.

41. © Harvard Pilgrim Health Care, Inc Linguistic Heterogeneity: Chinese Majority of elderly speak Toisenese; most of them also understand Cantonese. Mandarin speakers are likely to be students or professionals who probably also speak English (except for the elderly). They tend not to speak Cantonese. Cantonese-speaking Chinese also speak Mandarin if they are educated.

42. © Harvard Pilgrim Health Care, Inc Written Medical Material Materials providing medical instructions need to be carefully written to avoid dangerous misunderstandings For Example: three times a day insert suppository take with food

43. © Harvard Pilgrim Health Care, Inc Case Example A fifty-nine year old bilingual Vietnamese immigrant who had been a farmer in Vietnam and was poorly educated prior to immigration, interpreted the direction, Take with meals, to mean he should carry the medication in his lunch pail. He did not actually take the medication at the time he ate, as he did not want anyone to know he was ill.

44. © Harvard Pilgrim Health Care, Inc The lower the patient satisfaction with the interaction, the greater the likelihood of non-adherence Source: Cohn, E. R. (2000) Communication to Promote Therapeutic Adherence. (www.pitt.edu)

45. © Harvard Pilgrim Health Care, Inc Perceptions of Time How does the patient perceive or organize time? Patients who are not regularly employed outside the home are usually less clock-bound in their perceptions of and organization of time. Some patients organize time by tasks, rather than by clock time. In many communities of color, time is organized in a more fluid and phenomenological manner.

46. © Harvard Pilgrim Health Care, Inc Perceptions of Time Medications requiring rigid dosing by clock time must be carefully discussed and reviewed. The provider should attempt to determine how the patient understands time.

47. © Harvard Pilgrim Health Care, Inc Perceptions of Time In some cases it may be necessary to tie dosing to an activity or to an event rather than to clock time: e.g. Take the medication about the time your children would come home from school.

48. © Harvard Pilgrim Health Care, Inc Employ Positive Non-Verbal Behaviors Lean forward Silence - LISTEN Appropriate eye contact Warm expression Source: Cohn, E. R. (2000) Communication to Promote Therapeutic Adherence. (www.pitt.edu)

49. © Harvard Pilgrim Health Care, Inc The Popularity of Alternative Medicine More than 4 out of 10 people in the United States visited alternative medicine practitioners in 1997. Sharp increase in the number of Americans using it, from 61 million in 1990 to 83 million in 1997, even though many alternative therapies arent covered by insurance. Patients spending on alternative therapies nearly doubled from 9.4 billion dollars in 1990 to 17 billion dollars in 1997. (1998)Trends in Alternative Medicine Use in the United States, 1990- 1997, JAMA, 280: 1569-1575.

50. © Harvard Pilgrim Health Care, Inc Demographic Profile of People Using Alternative Medicine In addition to patients from many ethnic groups: People who are ages 35 – 49 Very well-educated Incomes of about $50,000 a year People who are sick: In fact, 7 out of 10 cancer patients turn to an alternative therapy as a means of maximizing their hopes of seeing a cure.

51. © Harvard Pilgrim Health Care, Inc Use of Herbal treatments Most patients tend to think of herbal treatments as natural and safe… However a small scale study examining the effects of St. Johns Wort (n=5) reported: That patients taking St. Johns Wort & Camptosar (a chemotherapy agent) showed a 40% reduction in blood levels of Camtosar Suppressant effect may last for at least 3 weeks after discontinuing St. Johns Wort Source: Boston Globe, April 9, 2002

52. © Harvard Pilgrim Health Care, Inc Lack of Trust In many ethnic communities, there is a distinct lack of trust of medical institutions: African Americans recall the infamous Tuskeegee study which affected hundreds of African american families. Forced sterilization of ethnic minority women was a fairly common event well into the 1960s In many American medical institutions, ethnic minorities and poor whites were used as experimental subjects without their consent.

53. © Harvard Pilgrim Health Care, Inc Lack of Trust Many ethnic minority patients find it easy to believe that a provider is experimenting on them Many believe that medications used to treat whites are too strong for the system of ethnic people. Patients who are being treated for diseases with no apparent symptoms, find it hard to be compliant with treatment regimens, especially in the context of abuses in the medical care system.

54. © Harvard Pilgrim Health Care, Inc Provide Information Be persuasive as opposed to commanding Describe use Inform about side effects: Research shows: This does NOT increase side effects Tell when and how medication will help Avoid being too complicated or detailed Use plain English, avoid technical terms Avoid anxious mannerisms (e.g. touching self, shuffling papers, looking at watch). These may be interpreted as a lack of truthfulness or honesty. Source: Cohn, E. R. (2000) Communication to Promote Therapeutic Adherence. (www.pitt.edu)

55. © Harvard Pilgrim Health Care, Inc Determine the Patients View of the Medication Regimen Ask the person: Do you think there will be any problems with the medication? Have you taken a medication similar to this in the past? Provide Information Provide Strategies Source: Cohn, E. R. (2000) Communication to Promote Therapeutic Adherence. (www.pitt.edu)

56. © Harvard Pilgrim Health Care, Inc Causes of Non-Adherence Health Beliefs: Persons perceptions of Seriousness of the illness Outcomes of non-treatment Perceived ineffectiveness of treatment Lack of social support Social discouragement Adverse effects Lengthy or complicated treatment regimens Source: Cohn, E. R. (2000) Communication to Promote Therapeutic Adherence. (www.pitt.edu)

57. © Harvard Pilgrim Health Care, Inc Causes of Non-Adherence Poor Communication Minimal medical supervision Insufficient instruction Poor Feedback Interactions with health professional perceived as unfriendly perceived as unconcerned little interaction unilateral interaction Source: Cohn, E. R. (2000) Communication to Promote Therapeutic Adherence. (www.pitt.edu)

58. © Harvard Pilgrim Health Care, Inc Patient Satisfaction Patient satisfaction increases when clinician uses psychosocially-oriented interview Psychosocially oriented interview was LEAST frequently used Perception among physician that takes more time BUT: Study found that psychosocial interview did not significantly increase time of the clinical encounter Roter,DL, Stewart, M., Putnam, SM, Lipkin, M, Stile, W. & Inui, T (1997) Communication patterns of primary care physicians. Journal of the Amer. Med. Assoc., 277(4):350-56.

59. © Harvard Pilgrim Health Care, Inc Linguistic Access: Eliciting Clinical Information Many languages lack terms equivalent to our medical terminology: When interviewed in English, patients sometimes responded positively to questions, even when they were confused by the terminology used in the interview. When interviewed in their language of origin, lack of understanding was more readily identified. Pasick, RJ.,Stewart, SL, Bird, JA & DOnofrio, CN (2001) Quality of Data in Multiethnic Health Surveys, Public Health Reports, Supplement 1, Vol. 116:223-243

60. © Harvard Pilgrim Health Care, Inc Linguistic Access: Eliciting Clinical Information Questions that created problems for respondents included those in which: The concept or wording was unclear The translation was difficult The concept or wording was culturally inappropriate The request for sensitive information led to untruthful responses Pasick, RJ.,Stewart, SL, Bird, JA & DOnofrio, CN (2001) Quality of Data in Multiethnic Health Surveys, Public Health Reports, Supplement 1, Vol. 116:223-243

61. © Harvard Pilgrim Health Care, Inc Linguistic Access: Eliciting Clinical Information Questions which worked better were those which: used clearly defined concepts used clear and simple language asked for factual information Pasick, RJ.,Stewart, SL, Bird, JA & DOnofrio, CN (2001) Quality of Data in Multiethnic Health Surveys, Public Health Reports, Supplement 1, Vol. 116:223-243

62. © Harvard Pilgrim Health Care, Inc Linguistic Access: Eliciting Clinical Information Survey questions which were identified as most problematic were those which attempted to elicit: socio-demographic information preventive behaviors attitudes and beliefs Pasick, RJ.,Stewart, SL, Bird, JA & DOnofrio, CN (2001) Quality of Data in Multiethnic Health Surveys, Public Health Reports, Supplement 1, Vol. 116:223-243

63. © Harvard Pilgrim Health Care, Inc Linguistic Access: Eliciting Clinical Information Consider the question When did you have your last check-up? Focus groups were conducted in Spanish, English, Cantonese and Vietnamese. Pasick, RJ.,Stewart, SL, Bird, JA & DOnofrio, CN (2001) Quality of Data in Multiethnic Health Surveys, Public Health Reports, Supplement 1, Vol. 116:223-243

64. © Harvard Pilgrim Health Care, Inc Linguistic Access: Eliciting Clinical Information When did you have your last check-up? Focus group feedback revealed: Latinas felt that most Latina respondents would lie, because they knew they were supposed to get check-ups, whether they did or not. Pasick, RJ.,Stewart, SL, Bird, JA & DOnofrio, CN (2001) Quality of Data in Multiethnic Health Surveys, Public Health Reports, Supplement 1, Vol. 116:223-243

65. © Harvard Pilgrim Health Care, Inc Linguistic Access: Eliciting Clinical Information Focus Group feedback: Last Checkup? Chinese women wondered why one would go to a doctor if one was healthy. They felt that Chinese respondents might associate regular check-ups with a presumption of illness, may not answer truthfully, even if they did indeed have a check-up. Vietnamese women had trouble understanding the concepts of routine and check-up though most answered the question in the affirmative when interviewed in English. Pasick, RJ.,Stewart, SL, Bird, JA & DOnofrio, CN (2001) Quality of Data in Multiethnic Health Surveys, Public Health Reports, Supplement 1, Vol. 116:223-243

66. © Harvard Pilgrim Health Care, Inc Communication: Soliciting the Patients Concerns Communication is at the heart of the clinician patient encounter: Physicians actively solicited patient concerns in 75.4% of interviews Patients initial statement of concerns was completed in only 28% of interviews. In 24.6% of visits, the physician did not ask the patient about his/her concerns. Marvel, MK, Epstein, RM, Flowers, K & Beckman, HB (1999) Soliciting the patients agenda: have we improved? JAMA, 281(3):283-287

67. © Harvard Pilgrim Health Care, Inc Communication The average visit length was 15 minutes. The average patient who came with one or more concerns used only 32 seconds to complete their review of concerns. No patient used more than 129 seconds. Marvel, MK, Epstein, RM, Flowers, K & Beckman, HB (1999) Soliciting the patients agenda: have we improved? JAMA, 281(3):283-287

68. © Harvard Pilgrim Health Care, Inc Communication When patients were allowed to complete their initial statement of concerns, there were fewer spontaneous statements of concerns which occurred after the history taking portion of the interview (14.9% vs. 34.9%) Marvel, MK, Epstein, RM, Flowers, K & Beckman, HB (1999) Soliciting the patients agenda: have we improved? JAMA, 281(3):283-287