1. Addressing Cross-Cultural Health Literacy Challenges in Clinical Practice Robert C. Like, MD, MS Professor and Director Center for Healthy Families and Cultural Diversity Department of Family Medicine UMDNJ-Robert Wood Johnson Medical School

2. Define the scope and impact of low health literacy in America Discuss selected clinical cases illustrating health literacy challenges Describe practical strategies and resources that can facilitate caring for patients with limited health literacy Objectives

3. To Err is Human: Building a Safer Health System (1999) Crossing the Quality Chasm: A New Health System for the 21st Century (2001) Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care (2002) Health Literacy: A Prescription to End Confusion (2004) Institute of Medicine Reports

4. Who Is Responsible for Improving Health Literacy? A health literate America is a society in which health systems and institutions take responsibility for providing clear communication and adequate support to facilitate health-promoting actions based on understanding. —Institute of Medicine, 2004 http://www.health.gov/communication/literacy/powerpoint

5. What Is Health Literacy? Health literacy is the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions. Health literacy is dependent on both individual and systemic factors: 1.Communication skills of lay people and professionals 2.Knowledge of lay people and professionals of health topics 3.Culture 4.Demands of the healthcare and public health systems 5.Demands of the situation/context http://www.health.gov/communication/literacy/powerpoint

6. How Big Is the Problem? Approximately 40 to 44 Million Adults in the US Are Functionally Illiterate 1 Approximately 50 Million Are Marginally Illiterate 1 Average Reading Skills of Adults in the US Are Between the 8 th and 9 th Grade Levels 2 More Than 90 Million People in the US Have Difficulty Reading Sources: 1 Kirsch et al., “A First Look at the Results of the National Adult Literacy Survey” Nat’l Center for Education Statistics, 1993 2 Stedman L, Kaestle C. Literacy and Reading Performance in the US From 1880 to Present. In: Kaestle C, Editor. Literacy in the US: Readers and Reading Since 1880. New Haven (CT): Yale University Press; 1991. P. 75–128 Cannot Perform Basic Reading Tasks Required to Function in Society Have Trouble Reading Maps and Completing Standard Forms

7. National Assessment of Adult Literacy Levels - 2003 Below Basic - no more than the most simple and concrete literacy skills Basic can perform simple everyday literacy activities Intermediate - can perform moderately challenging literacy activities Proficient - can perform complex and challenging literacy activities http://nces.ed.gov/naal/ file:///C:/Documents%20and%20Settings/like.CORE/Local%20Settings/Temporary%20Inte rnet%20Files/Content.IE5/W3ATUDWR/439,17,Description of literacy levels

8. Measuring health literacy Number & Percentage of Adults in Each Health Literacy Level: 2003 Source: National Center for Education Statistics, Institute for Education Sciences

9. Percentage of adults in each literacy level: 2003 Source: National Center for Education Statistics, Institute for Education Sciences 36% 77M adults

10. Percentage of adults in each health literacy level, by age: 2003

11. Who Is at Risk for Low Health Literacy? Anyone in the US – regardless of age, race, education, income or social class – can be at risk for low health literacy –Ethnic minority groups are disproportionately affected by low health literacy –The majority of people with low literacy skills in the US are white, native-born Americans –Older patients, recent immigrants, people with chronic diseases and those with low socioeconomic status are especially vulnerable to low health literacy

12. Low Health Literacy Impacts a Patient’s Ability to Fully Engage in the Healthcare System The Largest Study Conducted to Date on Health Literacy Found That… Source: Williams MV, Parker RM, Baker DW, et al. Inadequate Functional Health Literacy Among Patients at Two Public Hospitals. JAMA 1995 Dec 6; 274(21):1,677–82 33% Were unable to read basic health care materials 42% Could not comprehend directions for taking medication on an empty stomach 26% Were unable to understand information on an appointment slip 86% Did not understand the rights and responsibilities section of a Medicaid application 60% Did not understand a standard informed consent

13. Implications of Low Health Literacy Poor Health Outcomes Under-utilization of preventive services Over-utilization of health services Unnecessary health care expenditures Limited effectiveness of treatment Needless patient suffering Higher patient dissatisfaction Higher provider frustration

14. Video Presentation Health Literacy: Help Your Patients Understand American Medical Association American Medical Association Foundation http://www.ama-assn.org/ama/pub/category/8115.html

15. CASE STUDIES AND SMALL GROUP DISCUSSION Weiss BD. Health Literacy and Patient Safety: Help Patients Understand. Manual for Clinicians, 2nd edition. Chicago, IL: American Medical Association Foundation, 2007 http://www.ama-assn.org/ama1/pub/upload/mm/367/healthlitclinicians.pdf http://www.ama-assn.org/ama1/pub/upload/mm/367/healthlitclinicians.pdf

16. Limited Health Literacy: Clues and Red Flags Responses to receiving written information “I forgot my glasses. I’ll read this when I get home.” “I forgot my glasses. Can you read this to me?” “Let me bring this home so I can discuss it with my children.” Responses to questions about medication regimens Unable to name medications Unable to explain what medications are for. Unable to explain timing of medication administration. Weiss BD. Health Literacy and Patient Safety: Help Patients Understand. Manual for Clinicians, 2nd edition. Chicago, IL: American Medical Association Foundation, 2007, page 17. http://www.ama-assn.org/ama1/pub/upload/mm/367/healthlitclinicians.pdf http://www.ama-assn.org/ama1/pub/upload/mm/367/healthlitclinicians.pdf

17. Limited Health Literacy: Clues and Red Flags Behaviors Patient registration forms that are incomplete or inaccurately completed Frequently missed appointments Noncompliance with medication regimens Lack of follow-through with laboratory tests, imaging tests, or referrals to consultants Patients say they are taking their medication, but laboratory tests or physiological parameters do not change in the expected fashion Weiss BD. Health Literacy and Patient Safety: Help Patients Understand. Manual for Clinicians, 2nd edition. Chicago, IL: American Medical Association Foundation, 2007, page 17. http://www.ama-assn.org/ama1/pub/upload/mm/367/healthlitclinicians.pdf http://www.ama-assn.org/ama1/pub/upload/mm/367/healthlitclinicians.pdf

18. Brief Health Literacy Screening Questions How often do you have someone (like a family member, friend, or hospital worker) help you read hospital materials? How often do you have problems learning about your medical condition because of difficulty understanding written information? How confident are you filling out medical forms by yourself? Wallace LS et al. Can screening items identify surgery patients at risk of limited health literacy? J Surg Res 2007; 140(2):208-213

19. Health Literacy Screening Tools Wide Range Achievement Test (WRAT) reading subtest Rapid Estimate of Adult Literacy in Medicine (REALM) Test of Functional Health Literacy in Adults (TOFHLA and S-TOFHLA) The Newest Vital Sign Short Assessment of Health Literacy for Spanish-speaking Adults (SAHLSA) Wide Range Inc. Wide Range Achievement Test (WRAT 3). Wilmington, DE: Wide Range Inc., 1993. Davis TC, Long SW, Jackson RH, et al. Rapid estimate of adult literacy in medicine: a shortened screening instrument. Fam Med 1993;25:391-5. Parker RM, Baker DW, Williams MV, et al. The test of functional health literacy in adults: a new instrument for measuring patients' literacy skills. J Gen Intern Med 1995;10:537-41. Weiss BD, Mays MZ, Martz W, et al. Quick Assessment of Literacy in Primary Care: The Newest Vital Sign Ann Fam Med 2005; 3:514-522. Shoou-Yih DL, Bender DE, Ruiz RE, and Cho YI. Development of an easy-to-use Spanish health literacy test. Health Services Research 2006; 41(4):1392-1412.

20. SPEAK: A Mnemonic for Addressing Health Literacy Issues S : Speech - How will the healthcare provider’s speech be received by the patient and/or caregiver? P : Perception - How will the patient and/or caregiver perceive both the verbal and written content during the communication with the health care provider? E: Education - What is the education level of the patient and/or caregiver? A: Access – How will the patient and/or caregiver access the health care system? K: Knowledge – How will assessment of health literacy be carried out, and what tools will be used? Kobylarz FA, Pomidor A, Heath JM. “Speak – A Mnemonic Tool for Addressing Health Literacy Concerns in Geriatric Clinical Encounters.” Geriatrics 2006; 71(7):20-26.

21. Reaching a Solution The Partnership for Clear Health Communication is a coalition of national organizations that are working together to promote awareness and solutions around the issue of low health literacy and its effect on health outcomes Introducing the Partnership for Clear Health Communication

22. Written Communication 87% report reading Rx information Yet only 34% believe others read this same information What Do We Do? Develop Written Materials at 6th Grade or Below, Where 160MM Can Understand and Act Written Making Health Information Understandable Source: Health Literacy & The Prescription Drug Experience: The Front Line Perspective From Patients, Physicians and Pharmacists, Roper ASW, May 2002 50% of adults read at below 8th grade reading levels 20% of adults read at below 5th grade reading levels 40% of seniors read at below 5th grade reading levels Consumer healthcare materials written at 10th grade or above, where only 50MM can understand and act

23. What You Need to Know About Low Blood Sugar Treat low blood sugar quickly. If you have signs of low blood sugar, eat or drink something that has sugar in it. Some things you can eat are hard candy, sugar- sweetened soda, orange juice, or a glass of milk. Special tablets or gel made of glucose (a form of sugar) can be used to treat low blood sugar. You can buy these in a drug store. Always have some of these items handy at home or with you when you go out in case your blood sugar drops too low. After treating a low blood sugar reaction, eat a small snack like half a sandwich, a glass of milk, or some crackers if your next meal is more than 30 minutes away. Source: The National Institute of Diabetes and Digestive and Kidney Diseases Example of Health Communication That May Not Reach a Broad Consumer Audience 70150 Blood Sugar Is Too Low if It Is Under 70 Blood Sugar Is Too High if It Is Over 240 Good Range Too High Too Low 9th Grade Reading Level

24. Example of Clear Health Communication – That Reaches a Broad Consumer Audience Common visual used to explain concept Uses action captions that clarify the point of the visual Creates interaction with the reader

25. Verbal Communication Patients experience shame around the issue Only 14% of patients say they feel awkward admitting they don’t understand; yet 79% feel others don’t understand Providers experience time challenges Providers interrupt patients 30 seconds after they start speaking; if not interrupted, patients will speak less than two minutes Create an Environment of TRUST What Can We Do? Up to 80% of Patients Forget What Their Doctor Tells Them As Soon As They Leave the Doctor’s Office – AND Nearly 50% of What They Do Remember is Recalled Incorrectly Source: Health Literacy & The Prescription Drug Experience: The Front Line Perspective From Patients, Physicians and Pharmacists, Roper ASW, May 2002

26. Clear Health Communication in Action BenignHarmless ChronicHappens again and again; does not end Cardiac Heart EdemaSwelling; build up of fluid FatigueTired ScreeningTest IntakeWhat you eat or drink GenericNot a brand name Adverse eventsSide effects Consider Using This One Instead Instead of Using This Word Start by Decreasing the Use of Medical Jargon

27. Ask Me 3 – Creates Shared Responsibility for Clear Health Communication PatientProvider De-stigmatize and Reduce Embarrassment of Low Health Literacy Recognize Patient Coping Mechanisms Provides a consistent approach to patient-provider dialogue Allows patients to get information they need to manage their health Time-efficient for providers to reinforce healthcare instructions

28. What Is Ask Me 3 Promotes three simple, but essential, questions and answers for every healthcare interaction: Why Is It Important for Me to Do This? Context What Do I Need to Do? Treatment What Is My Main Problem? Diagnosis

29. What Else Can You Do? When making an appointment, provide people with simple options and clear facts Appointment Instructions Also see: Urgent Care (if you are too sick to wait for an appointment) Making a medical appointment for the first time, it is straightforward: You call 555-2222 and make a appointment at XYZ Health Services just like you would at any doctor's office.Urgent Care You can request a specific clinician if you have someone in mind, or you can explain your need or problem to the appointment counselor, and he or she will schedule you with an appropriate clinician at the earliest possible date. At your first appointment you will receive a medical record card -- often referred to as your "gold card" -- which you will keep and use as your XYZ Health Services identification. If you are unsure about whether you should make an appointment, you may call the Advice Nurse at 666-7777. Also, in advance of your first appointment, be sure to read "How to Make the Most of Your XYZ Visit."How to Make the Most of Your XYZ Visit Please call 643-7177 to make an appointment in the Specialty Clinics, including Allergy & Travel. Specialty appointments require a referral. You may also drop by the Appointment Office to make a medical appointment. The Appointment Office is located on the first floor in Room 1111. You may also make an appointment in the Specialty Clinics by going to the Specialty Clinic reception desk, located behind the elevators on the first floor. If you need to cancel an appointment, please call our 24-hour cancellation line at 643-7033. Please note that you will be billed for a broken appointment fee if you do not show up for your appointment and have not called to cancel it. Your Name Your Appointment Date Time Place Our Telephone Number: Do not eat or drink for 6 hours before the day and time on this card. People Have Difficulty Making Appointments

30. What Else Can You Do? Phone answered by a tape recording. Speaking quickly, the caller is offered numerous options and alternatives Speak slowly and clearly Provide an easy way to connect with a live person Provide options in other languages People Have Trouble Understanding Phone Recordings

31. What Else Can You Do? Ambulatory Entrance Hospital XYZ Some people become confused about whether this entry was intended for ambulances or for patients Ambulatory Entrance The use of visuals clarify the message Contrast in color makes it easy to read Try to be consistent when hanging signs People Have Trouble Reading Signs

32. What Else Can You Do? To make maps easier to follow: Match the color in the map with the paint color on walls or floors Match the names in the map to the names on the signs Use 14 point font size or larger Maps are usually hard to follow: Too complicated Codes are hard to understand Names and directions not always match Small fonts People Have Trouble Understanding Maps

33. What Should We Do? Raise professional and public awareness about health literacy Need for activated, informed, and empowered patients/consumers, families, and caregivers Implement a “universal precautions” approach in screening for low health literacy Create “shame-free” and “blame-free” environments

34. What Should We Do? Develop health education programs and materials that are appropriately targeted and tailored for diverse populations Provide culturally and linguistically appropriate services (OMH CLAS Standards - www.omhrc.gov/CLAS) Monitor for disparities in access to care, service utilization, quality, safety, and health outcomes Address ethical issues and concerns in health literacy improvement efforts

35. Becoming a Culturally Competent Healthcare Organization and Service Delivery System

36. The Need for Integrative Approaches Patient Assessment Strategies Workforce Strategies Education and Training Other Main Strategies Andrulis DP, Brach C: Integrating Literacy, Culture, and Language to Improve Health Care Quality for Diverse Populations, American Journal of Health Behavior 2007:31 (Suppl 1):S122-S133. Health Literacy, Cultural Competence, and Linguistic Competence

37. National Center for Cultural Competence Georgetown University A Guide to Planning and Implementing Cultural Competence Organizational Self-Assessment Cultural Competence Health Practitioner Policy Assessment Planning for Cultural and Linguistic Competence in Systems of Care Process of Inquiry: Communicating in a Multicultural Environment Bridging the Cultural Divide in Health Care Settings: The Essential Role of Cultural Broker Programs Self-Assessment Checklist for Personnel Providing Primary Health Care Services http://www11.georgetown.edu/research/gucchd/nccc

38. Joint Commission Hospitals, Language, and Culture: A Snapshot of the Nation, March 2007 http://www.jointcommission.org/NR/rdonlyres/E64E5E89-5734-4D1D-BB4D-C4ACD4BF8BD3/0/hlc_paper.pdf One Size Does Not Fit All: Meeting the Health Care Needs of Diverse Populations, April 2008 http://www.jointcommission.org/NewsRoom/NewsReleases/nr_04_21_08.htm “What Did the Doctor Say?:” Improving Health Literacy to Protect Patient Safety, February 2007 http://www.jointcommission.org/NR/rdonlyres/D5248B2E-E7E6-4121-8874- 99C7B4888301/0/improving_health_literacy.pdf Crosswalk Between OMH CLAS Standards and Joint Commission 2007 Standards for Hospitals, Ambulatory, Behavioral Health, Long Term Care and Home Care http://www.jointcommission.org/NR/rdonlyres/5EABBEC8-F5E2-4810-A16F- E2F148AB5170/0/hlc_omh_xwalk.pdf

39. National Committee for Quality Assurance (NCQA) Innovative Practices in Multicultural Health Care 2006 -2007 http://web.ncqa.org/Portals/0/HEDISQM/CLAS/CLAS_InnovativePrac06.pdf Multicultural Health Care: A Quality Improvement Guide, 2008 http://www.ncqa.org/tabid/676/Default.aspx Funded by the California Endowment/Support from CMS

40. Selected Health Literacy Resources Nielsen-Bohlman L, Panzer AM, Kindig, DA, eds. Committee on Health Literacy. Health Literacy - A Prescription to End Confusion. Institute of Medicine, Washington, DC: National Academies Press, 2004. http://www.nap.edu/catalog/10883.html http://www.nap.edu/catalog/10883.html Andrulis DB, Brach C. “Integrating Literacy, Culture, and Language to Improve Health Care Quality for Diverse Populations. American Journal of Health Behavior 2007; 31 (Suppl 1):S122-S133. Johnston Lloyd LL, Ammar NJ, Epstein LG, Johnson R, Rhee K. A Transdisciplinary Approach to Improve Health Literacy and Reduce Disparities. Health Promotion Practice 2006; 7(3):331-335. http://hpp.sagepub.com/cgi/content/abstract/7/3/331 http://hpp.sagepub.com/cgi/content/abstract/7/3/331 DHHS Office of Disease Prevention and Health Promotion Health Literacy Improvement Website http://www.health.gov/communication/literacy/powerpoint http://www.health.gov/communication/literacy/quickguide http://www.health.gov/communication/literacy/powerpoint http://www.health.gov/communication/literacy/quickguide DHHS Administration on Aging. Communicating with Older Adults http://www.aoa.gov/prof/communicating/communicating.asp http://www.aoa.gov/prof/communicating/communicating.asp AHRQ Health Literacy and Cultural Competency Website http://www.ahrq.gov/browse/hlitix.htm http://www.ahrq.gov/browse/hlitix.htm Partnership for Clear Health Communication/Ask Me 3 “Advancing Clear Health Communication to Positively Impact Health Outcomes” Presentation http://www.askme3.org/PFCHC/professional_presentation.ppt http://www.askme3.org/PFCHC/professional_presentation.ppt

41. Selected Health Literacy Resources Health Resources and Services Administration. Unified Health Communication 101: Addressing Health Literacy, Cultural Competency, and Limited English Proficiency http://www.hrsa.gov/healthliteracy/training.htm http://www.hrsa.gov/healthliteracy/training.htm AMA/AMA Foundation’s Health Literacy Toolkits, Videos, Partnerships Video - Health Literacy: Help Your Patients Understand http://www.ama-assn.org/ama/pub/category/8115.html http://www.ama-assn.org/ama/pub/category/8115.html Weiss BD. Health Literacy and Patient Safety: Help Patients Understand. Manual for Clinicians, 2nd edition. Chicago, IL: American Medical Association Foundation, 2007 http://www.ama-assn.org/ama1/pub/upload/mm/367/healthlitclinicians.pdf http://www.ama-assn.org/ama1/pub/upload/mm/367/healthlitclinicians.pdf Allen CE, Kindig, DA, Parker RM, Roter DL. Assuring Quality Care for People With Limited Health Literacy CME/CE Medscape Family Medicine, January 25, 2008. http://www.medscape.com/viewprogram/8603 http://www.medscape.com/viewprogram/8603 American College of Physicians Foundation Health Literacy Resources and CD Health Literacy: A Silent Epidemic. http://foundation.acponline.org/healthcom/hli/resources.htm http://foundation.acponline.org/healthcom/hli/resources.htm American Academy of Family Physicians. Play It Safe with Medicine! (Toolkit) http://www.aafp.org/online/en/home/publications/news/news-now/inside- aafp/20061122playitsafe.html http://www.aafp.org/online/en/home/publications/news/news-now/inside- aafp/20061122playitsafe.html

42. “ Adding wings to caterpillars does not create butterflies -- it creates awkward and dysfunctional caterpillars. Butterflies are created through transformation.” Stephanie Pace Marshall