1. Health Literacy: Costs, Consequences, and Clinical Implications Peggy Sissel-Phelan, Ed.D. Community Health Centers of Arkansas Annual Conference June 14 – 15, 2010

2. Defining Literacy An individual’s ability to read, write, and speak English, and compute and solve problems at levels of proficiency necessary to function on the job and in society, to achieve one’s goals, and develop one’s knowledge and potential. Workforce Investment Act (1998) The ability to use printed and written information to function in society, to achieve one’s goals, and to develop one’s knowledge and potential. National Assessment of Adult Literacy (2003)

3. Literacy Needs in Context Historic Perspectives Multiple meanings Changing measures 20th Century Changes 1900 – 1950’s . . . . . . . . Industrialization 1960’s . . . . . . . . . . . . . . Space race 1970’s . . . . . . . . . . . . . . International development 1980’s . . . . . . . . . . . . . . Technological advancement 1990’s . . . . . . . . . . . . . . Globalization

4. Assessing Literacy 2003 National Assessment of Adult Literacy (NAAL) 19,000 adults ages 16+ 107 incarcerated 1992 National Adult Literacy Survey (NALS) 16,000 adults ages 16+ 1,000 incarcerated

5. Methodology NAAL Tested literacy tasks Prose, Document, and Quantitative 5 reading skill levels Below Basic Basic Intermediate Proficient Not literate in English Health Literacy Component NALS Tested literacy tasks Prose, Document, and Quantitative 5 reading skill levels Level 1 – approx. 1st grade Level 2 – approx. 4th grade Level 3 – approx. 8th grade Level 4 – approx 12th grade Level 5 - College

6. Results 2003 NAAL 14% Below Basic 29% Basic 43% at Basic or Below plus 5% not literate in English = 97 million U.S. adults 1992 NALS 23% Level 1 28% Level 2 51% at Level 1 or 2 = 90 million U.S. adults

7. NALS and Communities State by State Extrapolation 1992 NALS results synthesized with 1990 census data Late 90’s Findings Released State Congressional District County City Arkansas

8. Note: Level 1 equates to about 1st grade reading skills

9. Estimated Adults at Level 2 Literacy Skills or Below Number of Counties Note: Level 2 equates to about 4th grade reading skills n = 3 n = 8 n = 19 n = 29 n = 12 n = 3 43-45% 46-51% 52-59% 60-69% 70-79% 80-89%

10. Percentage of Adults in Arkansas Towns at Level 2 or Below Fayetteville Sherwood Arkadelphia Bentonville Conway Fort Smith Jacksonville Jonesboro Benton Magnolia N. Little Rock Paragould Van Buren Blytheville Camden El Dorado Hot Springs Forrest City Pine Bluff 30-39% 40-49% 50-59% 60-69% 70-79% Little Rock Rogers Russellville Searcy Springdale Stuttgart Texarkana W. Memphis

11. Literacy Across Generations: Arkansas Below or Below Basic Literacy Skills Percent 100 90 80 70 60 50 40 30 20 10 0 Children Parents/Adults Children whose parents have low literacy skills are more likely to become adults with low literacy skills than children whose parents are good readers. Thomas Sticht, 2002

12. Literacy Across Generations: Arkansas Basic or Below Basic Parents/Adults 8th Graders City 32% 34% Fayetteville 44% 37% Bentonville 48% 40% Springdale 42% 46% Conway 44% 50% Jonesboro 42% 57% Rogers 46 % 55% Searcy 50 % 58% Benton 49 % 61% Arkadelphia Note: Parents data derived from National Adult Literacy Survey, 1992 Students data derived from National Assessment of Educational Progress, 2002

13. Basic or Below Basic Parents/Adults 8th Graders City 46 % 70% Little Rock 59% 58% Magnolia 58% 68% Paragould 54% 77% North Little Rock 63% 69% El Dorado 64% 70% Blytheville 62% 83% Texarkana 71% 92% Pine Bluff 78% 90% Forrest City Literacy Across Generations: Arkansas

15. Identify a specific location on a map

16. Use fractions

17. Interpret a growth chart or tableFunctional illiteracy impedes health and economic well-being. Practical Implications

20. Defining Health Literacy ROLE LEVEL ACTION EXPECTATION The ability to read and comprehend prescription bottles, appointment slips, and the other essential health-related materials required to successfully function as a patient. (AMA Council of Scientific Affairs, 2000) The degree to which individualshave the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions. (Ratzan and Parker, 2000)

21. Defining Health Literacy ROLE LEVEL ACTION EXPECTATION The ability to read, understand, and act on health care information. (Healthy People 2010, US Department of Health and Human Services, Office of Disease Prevention and Health Promotion, 2000, ) The ability to use printed and written information associated with a broad range of health-related tasks to accomplishone’s goals at home, in the workplace, and in the community (including health care settings). (NAAL, 2003)

22. Defining Health Literacy ROLE ROLE LEVEL ACTION EXPECTATION Health literacy allows the public andpersonnel working in all health-related contextsto find, understand, evaluate, communicate, and use information. Health literacy is the use of a wide range of skills that improvethe ability of people to act on informationin order tolive healthier lives. These skills include reading, writing, listening, speaking, numeracy, and critical analysis, as well as communication and interaction skills. (Calgary Charter on Health Literacy, 2008)

23. Defining Health Literacy ROLE ROLE LEVEL ACTION EXPECTATION Health literacy allows the public andpersonnel working in all health-related contextsto find, understand, evaluate, communicate, and use information. Health literacy is the use of a wide range of skills that improvethe ability of peopleto act on informationin order to live healthier lives. These skills include reading, writing, listening, speaking, numeracy, and critical analysis, as well as communication and interaction skills. (Calgary Charter on Health Literacy, 2008) * The interconnected expectation of improving ability to act as a result of being health literate does not address key resource and access issues (distance, price, cultural norms, living conditions, personal constraints)

24. Defining Health Literacy ROLE ROLE LEVEL ACTION EXPECTATION Health literacy allows the public andpersonnel working in all health-related contextsto find, understand, evaluate, communicate, and use information. Health literacy is the use of a wide range of skills that improvethe ability of peopleto act on information in order to live healthier lives. These skills include reading, writing, listening, speaking, numeracy, and critical analysis, as well as communication and interaction skills. (Calgary Charter on Health Literacy, 2008) * Not simply being acted upon as the subject of care, but empowering individuals to address their own, and others’ health as a “partner” with health care providers and systems.

25. Health Literacy Needs in Context Changes in Care35 yrs. ago Today Treatment of Acute 4 - 6 weeks bed 2-4days Myocardial Infarction rest in hospital in hospital # Prescription Drugs 650 10,000 + on the market Treatment of new 3 weeks +/- outpatient onset Diabetes in hospital classes 0-3 hrs. 2 hours a day of diabetic classes Source: Balydon, Glusman, and Sharkey-Asner, 2009 For Reach Out and Read Illinois

26. NAAL Health Literacy Component Health literacy and relationship to prose, document, and quantitative skill. Address deficiencies in health literacy skills Policies Programs Development of appropriate health information Health Literacy Component

27. Health Literacy Component NAAL Data on target audiences Relationship between health literacy and educational attainment age race/ethnicity where adults get information about health issues, and health insurance coverage

28. Health Literacy Component Question types Clinical Navigation Preventive Assessment Methods Perform a task (circle word) Decode words (read instructions) Locate words or section (review and respond) Interpret (infer applicability)

29. Elements of Health Literacy Accessing health care system Levels of existing health information Locating information Understanding rights/responsibilities Decoding information Making inferences about care needs Carrying out directives Formulating questions Interpreting Oral information

30. NAAL Results Low Health Literacy: Social Characteristics Reports poor health 1 or more disabilities No health insurance or Medicaid Fewer preventive health measures Lower Educational Achievement Gets no health information from the Internet

31. NAAL Results Low Health Literacy: Social Characteristics Poverty Racial and ethnic minorities English as a Second Language Single Parent Families Older adults Prison inmates

32. Consequences of Low Literacy Access Misunderstanding Diagnosis Unable to Read Patient Education Materials Understanding and Following Health Related Instructions, compliance issues

33. Low Literacy Affects Access Locating, obtaining, navigating ie: 84% of Medicaid patients do not understand rules and regulations of the application form Adhering to and accepting care While still in the clinic 26% did not understand when return appointment was scheduled Cultural and beliefs stress no need for care Feelings of rejection, abuse, by health care staff

34. Consequences of Low Literacy Medication Errors Poor Outcomes 2 x more likely to be hospitalized Higher rates of medication and treatment errors Link: Low literacy, poor health, and early death Related factors: housing, diet, addiction, violence

35. Costs $38 -53 billion in unnecessary costs annually (Center for Health Care Strategies, Inc, 2001) $73 billion (Friedland, Georgetown University, 2003) $106-$236 billion (Vernon, University of Connecticut, 2007) Medical costs for adults with low literacy skills are four times the national average - $21,760.

36. You Can’t Always Tell In the Below Basic Literacy Group 37% have a HS or some college education 52% speak only English 54% have no physical or mental disabilities Kutner M et al, Nat Center for Educ Statistics 2005

37. The Stigma Patients who have never told: % Supervisor 91% Spouse 68% Children 53% Anyone 19% Parikh N, et al., Patient EducCouns, 1996.

38. How Does It Feel? The following passage simulates what a reader with below basic general literacy sees on the printed page. Read the entire passage out loud. You have 1 minute to read. Hint: The words are written backwards and the first word is “cleaning”

39. How Does It Feel? GNINAELC – Oterussahgihecnamrofrep, yllacidoirepnaelcehtepatsdaehdnanatspacrevenehwuoyecitonnanoitalumuccafotsuddnanworb-red edixoselcitrap. Esu a nottocbawsdenetsiomhtiwlyporposilohocla. Eberus on lohoclasehcuotehtrebbur strap, satisdnetotyrddnayllautnevekcarcehtrebbur. Esu a pmadtholcroegnopsotnaelcehttenibac. A dlimpaos, ekilgnihsawhsidtnegreted, lliwplehevomeresaergrolio.

40. How Does It Feel? How do you clean the capstan?

41. Red Flags: What to Look for Unable to name medications, or explain purpose or timing of administration Difficulty explaining medical concerns Detour, letting doctor miss the concern Have no questions Incomplete registration forms Frequently missed appointments Skipped tests and referrals Non-compliant with meds

42. Red Flags: What to Look for Seeking help only when illness is advanced Walking out of the waiting room Becoming angry, demanding Clowning around, using humor Being quiet, passive Making excuses Pretending they can read

43. Or . . “I forgot my glasses. I’ll read this when I get home.” “Let me bring this home so I can discuss it with my husband.”

44. Strategies: Make Changes Lessen stigma: Approach all patients the same way Be non-judgmental. There is no one correct way to ask There are natural times in the history during which you can bring this up Never ask “do you have questions” Use, what kind of questions do you have?

45. Strategies: Enhance Communication Attitude of helpfulness, caring and respect by all staff Conduct patient-centered visits Explain things clearly in plain language Focus on key messages and repeat Use a “teach back” or “show me” technique to check for understanding Use patient-friendly educational materials to enhance interaction

46. Strategies: Use Plain Language: Examples Stops Swelling Not Cancer Birth Control High BP By Mouth Picture of the heart Anti-inflammatory Benign Contraception Hypertension Oral Echocardiogram

47. Plain Language: It’s not just medical terms! We are disseminating information about…. We are giving outinformation about… How do you administer the medication? How do you givethe medicine? Have you ever purchased generic medications? Do you ever buystore brand medicine? This product has an extensive list of symptoms that it treats… Thismedicinecan help with many thingslike fever, or pain, etc….

48. Strategies: Use Patients’ Social History How far did you go in school? Did you ever have any difficulty in school? Has reading ever been a problem for you? Other possible ways to ask: Have you ever had difficulty reading materials the doctor gave you? Has a doctor ever been unclear when they explained things to you?

49. D.I.R.E.C.T. D- Do you have any Difficulty reading I- Are you interested in Improving R-We have Referrals/resources available E- Ask Everyone C- This is a Common problem T- Take down the barriers to obtaining the resources and take down current barriers to providing effective care Source: Balydon, Glusman, and Sharkey-Asner, 2009 For Reach Out and Read Illinois

50. Strategies: Written materials Simple words (1-2 syllables) Short sentences (4-6 words) Short paragraphs (2-3 sentences) No medical jargon Headings and bullets Lots of white space

51. Strategies: Teach Back Ask patient to demonstrate understanding “What will you tell your spouse about your child’s condition?” “I want to be sure I explained everything clearly, so can you please explain it back to me so I can be sure I did.” Academic settings can use the resident or student/attending interaction to do this Do not ask, “Do you understand?”

52. Strategies: Use Visuals Show or draw simple pictures Focus only on key points Emphasize what the patient should do Minimize information about anatomy and physiology Be sensitive to cultural preferences Visual aids can include handouts, pictures, models etc.

53. System Change Identify patients Identify the barriers faced by both patients and clinicians Identify and implement strategies to enhance health literacy Advocate for system change

54. Resources Pfizer Clear Health Communication Initiative http://www.pfizerhealthliteracy.com NYU Patient and Family Resource Center http://www.nyupatientlibrary.org/medcenter/build-skills Center for Health Care Strategies Health Literacy Fact Sheets http://www.chcs.org/publications3960/publications_show.htm?doc_id=291711

55. Resources Institute for Healthcare Advancement www.iha4health.org Michael Villaire, MSLM Director, Programs and Operations mvillaire@iha4health.org (800) 434-4633 x202 American Medical Association Health Literacy Program and Kit www. ama-assn.org

56. Resources Communicating Health Information. Editorial. Critical Care Nurse. 2004;24: 8-13 http://ccn.aacnjournals.org/cgi/content/full/24/4/8 Assessing the Nation’s Health Literacy: Key Concepts and Findings of the National Assessment of Adult Literacy (NAAL) Sheida White, PhD National Center for Education Statistics A Publication of the American Medical Association Foundation “Help Your Patients Understand.” Video Available from AMA Foundation http://www.ama-assn.org/ama/pub/category/8035.html