1. Health Literacy Research The Next Generation Health Literacy Core New Orleans February 20, 2014 Terry Davis, PhD Professor of Medicine and Pediatrics Connie Arnold PhD Associate Professor of Medicine LSUHSC-S

2. DISCLOSURE STATEMENT Research funding: – NIH, LA Clinical and Translational Science Center – Agency for Healthcare Research and Quality – American Cancer Society – American College of Physicians Foundation – National Cancer Institute Stocks: – Johnson & Johnson – Abbott Laboratories

3. Why Focus on Health Literacy? Health literacy is a focus of national interest Poor health literacy is a hidden problem in health research The majority of U.S. adults struggle with health information and tasks Literacy levels in U.S. are getting worse The demands and expectations of the healthcare system are increasing LA ranks 49 th in literacy and 49 th in overall health (tied with MS) 49 th obesity, infant mortality and 48 th in preventable hospitalizations Regina Benjamin, 2010; DHHS, 2007 United Health Foundation, Department of Education; IOM 2007

4. Health Literacy and LA CaTS The ability to obtain, process, understand, and use health information and services to make appropriate health decisions Low health literacy linked to: ↓ understanding & adherence to med instructions ↓ knowledge, confidence, & skills to manage chronic disease ↓ understanding of consent for procedures & trials ↓ preventive care & services – delayed diagnoses ↓ physical, mental health ↑ ER use, hospitalizations, and readmission ↑ disease related complications and mortality Davis T, Annals Intern Med, 2006; Sanders L, Arch Pediatr Adoles Med, 2009; Dewalt 2004, 2010 Evidence Based Review; DeWalt DA, J Gen Intern Med. 2004. Chew LD, Am J Surg, 2004; Muslow, Am J Surg. 2012.

5. Questions for Today Is there an imbalance in your patients’ knowledge and skills and the increasing demands needed to manage their health? How can we make health information and services easier to understand and use? What are promising strategies to improve healthcare communication, patient education and consent materials. What are “lessons learned” for your setting?

6. “Providers do not recognize that patients do not understand the health information we are trying to communicate.” “Public health emphasis is on getting information ‘out’ to people, not if it has been understood & used.” Dr. Richard Carmona, Former U.S. Surgeon General Hidden Problems with Health Information

7. * US DHHS, May 27, 2010. (www.health.gov/communication/HLactionplan) IOM Report (2004) 90 million adults have trouble understanding and acting on health information Healthy People 2010….and 2020 Improve health communication (plain language materials) Joint commission (2007) Patients must be given information they understand Health Literacy 1 st Viewed as Patient Deficit Emphasis Shifts to Health System

8. DHHS National Action Plan: Road Map to Improve Health Literacy Aim: Make health information and services easier to understand and use Goals : Develop and disseminate health information that is accurate, accessible, and actionable. Promote changes in healthcare delivery system Expand culturally & linguistically appropriate health information services in the community Build partnerships, develop guidance, change policies Increase research, and evaluation of interventions * US DHHS, May 27, 2010. (www.health.gov/communication/HLactionplan)www.health.gov/communication/HLactionplan

9. Literacy Definition (Requirement) Expands With Increasing Demands Of Society “…at a level needed to function on the job and in society.” National Literacy Act, 1991; S. White, Project Director NAALS 2016 Literacy Read Internet Skills Write Judgment/ Interpretation Problem Solving Math Skills Communicate

10. Low Literacy is a National Problem (National Adult Literacy Survey) National Institute for Literacy 1998 % Adults with Level 1 Literacy Skills 21% U.S. Adults are Level 1 48% level 1 and 2 – “lack sufficient literacy skills to function in society” Hispanic – 79%; African-American – 75%

11. Low Literacy Rates By Parish % Adults with Level 1 Literacy Skills National Institute for Literacy 1998 28% Louisiana Adults are Level 1 39% New Orleans Adults are Level 1 >30% 20%-30% 15% to 20% < 15%

12. What is it Like? These instructions simulate what a reader with low literacy sees on the printed page Read instructions out loud. You have 1 minute to read. Hint: The words are written backwards and the first word is “cleaning”

13. GNINAELC – Ot erussa hgih ecnamrofrep, yllacidoirep naelc eht epat sdaeh dna natspac revenehw uoy eciton na noitalumucca fo tsud dna nworb-der edixo selcitrap. Esu a nottoc baws denetsiom htiw lyporposi lohocla. Eb erus on lohocla sehcuot eht rebbur strap, sa ti sdnet ot yrd dna yllautneve kcarc eht rebbur. Esu a pmad tholc ro egnops ot naelc eht tenibac. A dlim paos, ekil gnihsawhsid tnegreted, lliw pleh evomer esaerg ro lio.

14. Cleaning – to assure high performance, periodically clean the tape heads and capstan whenever you notice an accumulation of dust and brown-red oxide particles. Use a cotton swab moistened with isopropyl alcohol. Be sure no alcohol touches the rubber parts as it tends to dry and eventually crack the rubber. Use a damp cloth or sponge to clean the cabinet. A mild soap like dishwasher detergent will help remove grease or oil.

15. 47% graduates go on to a 4 year college 43% need remedial classes Only 3 of 5 TOPS students graduate college in 6 years High school dropout rate: US 23%, LA 29%

16. 1 st National Assessment of Health Literacy Assessed functional skills in clinical, preventive, and navigational tasks Basic Below Basic Proficient 14% (22%) 12% (13%) 53% (33%) 22% (33%) National Assessment of Adult Literacy (NAAL): National Center for Educational Statistics, U.S. Dept. of Education, 2003. Intermediate Average HS grad Medicaid n=19,000 U.S. Adults Below basic Hispanic: 41% Native American: 25% Adults > 65: 29% (quantitative literacy)

17. Health Literacy Tasks Below Basic: Circle date on doctor’s appt. slip Basic: Give 2 reasons a person with no symptoms should get tested for cancer based on a clearly written pamphlet Intermediate: Determine what time to take Rx medicine based on label Proficient: Calculate employee share of health insurance costs using table 67% probability individual can perform task 152 tasks (28 health related) Intermediate Proficient Below Basic Basic

18. Calculation: A Hidden Problem Understanding Food Labels  You drink this whole bottle of soda. How many grams of total carbohydrates does it contain?  67.5 grams  32% answered correctly  200 primary care patients – 73% private insurance – 67% at least some college – 78% read > 9 th grade – 37% math > 9 th grade Rothman R, Am J Prev Med, 2006

19. Video It’s Hard to Be a Patient

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21. Red Flags For Limited Literacy “You Can’t Tell By Looking” May say “I forgot my glasses.” Incomplete intake forms Frequently missed appointments Unable to give coherent, sequential history Not taking medications correctly Ask fewer questions Lack of follow-through with referrals May be hesitant to sign forms. * Health Literacy and Patient Safety: Help Patients Understand – A Manual for Clinicians. 2 nd edition. Chicago: AMA Foundation and AMA, 2007. www.ama-assn.org/ama1/pub/upload/mm/367/healthclinicians.pdf

22. Video It’s Easy to Make a Mistake

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24. Medication Error Most Common Medical Mistake 1.5 M adverse events (patient error >700,000)  2 out of 3 patients leave MD visit with Rx  3.9 Billion Rx filled in 2010  Up 50% - 60% in 10 years  82% adults take at least one med  Elderly fill 20 Rx/year, see 8 physicians  1 in 6 pediatric Rx not dosed correctly  >300,000 OTC meds (>600 contain acetaminophen)  Most labels and inserts are in English only U.S. Census Bureau, 2009; PDR for Non-Prescription Drugs, Dietary Supplements and Herbs (2007); IMS Health 2005; IOM 2006.

25. Do Patients Understand How To Safely Take Their Medication?

26. What Does This Picture Mean? “Somebody is dizzy” “Don’t touch this stuff” “Take anywhere” “Chills or shaking” “Having an experience with God”

27. 1 in 10 Adults Struggle With Decoding “Use extreme caution in how you take it” “Medicine will make you feel dizzy” “Take only if you need it” 8% of patients with low literacy understood this instruction

28. Rx Label Instructions Can patients understand how to take meds after reviewing instructions on pill bottles? Davis, Wolf, Bass, Parker. Ann Intern Med, 2006.

29. “How would you take this medicine?” 46% did not understand instructions ≥ 1 labels 38% with adequate literacy missed at least 1 label <10% attended to warning labels 395 medicine clinic patients in 3 states 48% <9 th grade reading, averaged 1.4 meds Davis, Wolf, Bass, Parker. Ann Intern Med, 2006.

30. “Show Me How Many Pills You Would Take in 1 Day” John Smith Dr. Red Take two tablets by mouth twice daily. Humibid LA 600MG 1 refill Rates of Correct Understanding vs. Demonstration “Take Two Tablets by Mouth Twice Daily” 71 35 84 63 89 80

31. Patient Centered Label Can Improve Understanding and Adherence State Board of Pharmacy in CA passed legislation for this label Standard LabelPC Label Understanding59%74% Adherence (3 months) 30%49% RCT in 11 FQHCs. 429 pts w DM and/or HTN. Average 5 meds Mean age 52, 28% W, 39% low literacy

32. What I Learned on my 2007 Summer Vacation A Health Literacy Expert Has A Taste Of Her Own Medicine

33. When diagnosed, I had to ask cardiologist to write down “What’s my problem? What do you think I need to do?” Cardiologist’s Note 33 Hindsight: I should have asked my insurance company and LSU bureaucracy these questions

35. Why Am I Taking These? When and How Long Do I Take Them?

36. How Do I Space Out Pain Meds? Which Tylenol? I did not see active ingredient or realize its importance

37. Challenges When I Get Home: What is my strategy to keep all these meds straight?

38. “Crazy Cousin Nancy” The Internet Info Queen My cousin is a bright woman who lives on the internet; alternative medicine is her thing; she’s retired, lives alone She is concerned about me and my prescription meds She sends me at least 2 e-mails weekly about supplements, alternative cures for A-fib, mitral valve problems, high cholesterol, problems with Fosamax, acid in my urine, stress (soda in water daily), stop working so damn much – meditate more.

39. Strategies to Improve Health Communication, Patient Education & Consent Step 1 – Put yourself in patient’s shoes

40. 3 Problems with Face to Face Communication 1. Patients don’t understand unfamiliar medical terms. Those with low literacy rarely ask for clarification. Transcripts of 150 genetic counseling sessions found key terms (that were jargon) were typically repeated 20 times. In study of 800 pediatric visits only 1 mother asked for clarification. 2.Many have difficulty understanding and recalling complex information, less satisfied with visit. In study of 250 orthopedic patients at 1st post-op visit, 45% knew bone fractured, 19% knew expected healing time, 45% knew weight bearing status. In study of 100 surgery patients, 95% of surgeons believed patients understood when to resume normal activities vs. only 58% of patients. 3. Those with low literacy are less likely to actively participate in healthcare dialogue and decision making. Roter, D. 2011 Nursing Outlook; Korsch, B. Pediatrics 1968; Castro C 2007 Am J Health Behav; Kadakia, J Ortho Trauma, 2013; Calkins Arch Intern Med, 1997.

41. Solution : “Strip it down, bring it home, mix it up” Easy ways to reduce ‘literacy burden’ in ‘face-to-face’ communication Strip it down. Limit unnecessary use of jargon and complex language. Goal - engage patient in conversation that facilitates understanding, establishes rapport and diminishes social distance. Bring it home. Make health information personally relevant. Make it concrete by grounding it in the patient’s life. Begin by asking patients what they know. Mix it up Cut the ‘mini lectures’/monologues. Increase “the back and forth”. Talk less - listen more. Check for understanding, buy in, or questions. Have normal conversation. Roter, D. 2011 Nursing Outlook

42. 7 Health Literacy Steps to Improve Patient Education 1.Slow down 2.Avoid medical jargon, use living room language 3.Use pictures, teaching tools (pamphlets, brown bag meds) 4.Limit information – write brief take home information 5.Focus on need to know and do 6.Repeat and summarize info 7.‘Teach back’/’show back’ to confirm understanding

43. Strategy for Limiting Information Lessons learned from patients Tell me 3 What’s wrong? (briefly) (Diagnosis) What do I need to do? (Treatment) Why is it important that I do this? (Benefit/Context) If meds – “break it down” for me What’s it for? (indication) When to take? How many pills at a time, how long? (duration) Why? (benefit) What to expect? (side effects)

44. Pictures Can be Good Teaching Tools Patients may not understand or use measurements Healthy Carbs Fruits and VeggiesProteins

45. Confirm Patient Understanding ‘Teach back’ Improves Outcomes Ask patients to “teach back/ show back” key messages Avoid asking: – Do you understand? – Do you have any questions? Remember - what’s clear to you is clear to you! Schilinger, D. Arch Int Med, 2003

46. What About Research? Literacy is an easy, yet informative variable to add  Years of schooling is NOT a good measure of literacy level (reading comprehension often 2-5 grade levels < education level).  Several tests measure literacy in healthcare research. Some have math sections.  All existing tests measure literacy in health context (i.e. not health literacy).  These formal assessments provide a proxy measure of health literacy and can be used to compare results in the literature.  Patient’s score on literacy test is an indication they may struggle to understand and act on oral or written health information.

47. Literacy Tests Used in Healthcare Research The most commonly used REALM (Rapid Estimate of Literacy Medicine) TOFHLA (Test of Functional Health Literacy) NVS (Newest Vital Sign) These are sometimes referred to as tests of health literacy Qualitative: How confident are you filling out medical forms by yourself? Extremely – Quite A Bit – Somewhat – A Little Bit – Not At All ( 0 ) ( 1 ) ( 2 ) ( 3 ) ( 4 ) Tests and ordering instructions are in resources at the end of the presentation.

48. Testing patient literacy level alone will NOT confirm ability to understand and act on health information. No evidence that literacy testing improves health care delivery or outcomes when testing is done strictly for clinical use. To get the most accurate measure of patient’s specific health literacy clinically use “teach back.” “Universal precautions” (plain language) are recommended to make materials user-friendly. Cautions About Assessing Health Literacy Clinically

49. Health Literacy Research Ideas Expand technology for patient outreach – Cell phones for automated calls /texts, EHR mandates Make health numeracy easier to interpret and act on Address current health care challenges – Hospital discharge, health insurance Add cost effectiveness if possible Don’t forget your consent form – Can patients read and understand it – Is it formatted for reading ease? – Is the information included manageable or overwhelming?

50. Are We Prepared? A Perfect Storm is Approaching Intersection of declining literacy, increasing immigrant, minority & elderly populations, and the increasing demands of health care & society

51. What’s Our Bridge to Action? How does this talk stimulate your thinking? What strategies could LA CaTS develop and test to make health information/ services more user- friendly? What research ideas & collaborations does it spark?

52. Useful HL Resources

53. IOM Reports on Health Literacy Health Literacy: Improving Health, Health Systems, and Health Policy, 07/13 Oral Health Literacy, 02/13 How Can Health Care Organizations Become More Health Literate? 07/12 Promoting Health Literacy to Encourage Prevention and Wellness, 12/11 Improving health Literacy Within a State, 11/11 Health Literacy Implications for Health Care Reform, 07/11 Innovations in Health Literacy Research, 03/11 The Safe Use Initiative and Health Literacy, 12/10 Measures of Health Literacy, 12/09 Health Literacy, eHealth, and Communication: Putting the Consumer First, 03/09 Toward Health Equity and Patient-Centeredness: Integrating Health Literacy, Disparity Reduction, and Quality Improvement, 02/09 Health Literacy: A Prescription to End Confusion, 04/04 http://iom.edu/Reports.aspx

54. AHRQ Toolkits (Agency for Healthcare Research & Quality) Patient Education Materials Assessment Tool (PEMAT) (2013) www.ahrq.gov/pemat Hospital Discharge Project RED (ReEngineered Discharge) (2013) www.bu.edu/fammed/projectred/newtoolkit/ www.bu.edu/fammed/projectred/newtoolkit/ Informed Consent (2009) www.ahrq.gov/fund/informedconsent Health Literacy Universal Precautions (2010) (clinic based system) www.ahrq.gov/qual/literacy/ www.ahrq.gov/qual/literacy/

55. Pharmacy Assessment Tools and Training AHRQ (2007) Strategies to improve communication between pharmacy staff and patients training program www.ahrq.gov/qual/pharmlit/pharmtrain.htm Website Design HHS (2010) Health literacy online a guide to writing and designing easy to use health web sites www.health.gov/healthliteracyonline/ Web_Guide_Health_Lit_Online.pdf

56. Resources For Healthcare Organizations Institute of Medicine (2012) Ten Attributes of Health Literacy Healthcare Organizations iom.edu/Global/Perspectives/2012/HealthLitAttributes.aspx Health Literacy Environment of Hospitals & Health Centers (2006 ) www.hsph.harvard.edu/healthliteracy/www.hsph.harvard.edu/healthliteracy/ The Joint Commission (2007) What did the doctor say? Improving health literacy to protect patient safety National Qualify Forum (2009) Health Literacy a linchpin in achieving national goals for health and healthcare. Communication Climate Assessment Tool (2010) Wynia M: American Journal of Medical Quality

57. Health Literacy Websites CDC www.cdc.gov/healthliteracy www.cdc.gov/healthliteracy/pdf/simply_put.pdf NIH www.nih.gov/icd/od/ocpl/resources/healthliteracyresearch.htm UNC www.nchealthliteracy.org/ Rima Rudd (Harvard School of Public Health) www.hsph.harvard.edu/healthliteracy/ Helen Osborne www.healthliteracy.com/

58. Patient Education Development CDC (2013) Clear Communication Index www.cdc.gov/healthcommunication/ClearCommunicationIndex CMS (2011) Toolkit for making written materials clear and effective www.cms.gov/writtenmaterialstoolkit/ NCI (2003) Clear and simple developing effective print materials for low literacy readers www.cancer.gov/cancertopics/cancerlibrary/clear-and-simple/page1 Seligman HK, Wallace AS, DeWalt DA, et al: Developing low-literacy patient educational materials to facilitate behavior change. Am J Health Behav. 2007 Sep-Oct;31 Suppl 1:S69-78.

59. Patient Education Materials www.iha4health.org/default.aspx/MenuItemID/191/MenuGroup/_Home.htm American College of Physicians Helpful Ways To Lose Weight Caring For Your Heart Live Better With Rheumatoid Arthritis www.acponline.org/patient_tools End of Life Decision Making Volandes AE (2010) Medical Decision Making. 30(1):29-34 Living With Diabetes Living With COPD

60. List 1List 2List 3 fat flu pill dose eye stress smear nerves germs meals disease cancer caffeine attack kidney hormones herpes seizure bowel asthma rectal incest fatigue pelvic jaundice infection exercise behavior prescription notify gallbladder calories depression miscarriage pregnancy arthritis nutrition menopause appendix abnormal syphilis hemorrhoids nausea directed allergic menstrual testicle colitis emergency medication occupation sexually alcoholism irritation constipation gonorrhea inflammatory diabetes hepatitis antibiotics diagnosis potassium anemia obesity osteoporosis impetigo REALM 0-18 correct = < 3 rd grade 19-44 correct = 4 th -6 th grade 45-60 correct = 7 th -8 th grade 61-66 correct = high school Davis, Fam Med, 1993

61. S - TOFHLA PASSAGE A Your doctor has sent you to have a ____________ X-ray. a. stomach b. diabetes c. stitches d. germs You must have an __________ stomach when you come for ______. a. asthma a. is. b. empty b. am. c. incest c. if. d. anemia d. it. The X-ray will ________ from 1 to 3 _________ to do. a. take a. beds b. view b. brains c. talk c. hours d. look d. diets THE DAY BEFORE THE X-RAY. For supper have only a ________ snack of fruit, ________ and jelly, with coffee or tea. a. little a. toes b. broth b. throat c. attack c. toast d. nausea d. thigh Scoring: 0-16: Inadequate func. HL 17-22 Marginal func. HL 23-36 Adequate func. HL Parker, J Gen Intern Med, 1995

62. NVS Test has 6 Questions For example: If you can have 60 grams of carbs for a snack - how much ice cream can you have? Score: 1 point for each correct answer 0-1 Inadequate literacy 2-3 Marginal literacy 4-6 Adequate literacy

63. Ordering Information REALM and REALM-Teen  tdavis1@lsuhsc.edu TOFHLA, TOFHLA-Spanish and STOFHLA  http://peppercornbooks.com/catalog NVS  http://www.clearhealthcommunication.com/physicians- providers/newest-vital-sign.html WRAT  http://www3.parinc.com/products/product.aspx

64. National and State Literacy & Health Data National Assessment of Adult Literacy http://nces.ed.gov/naal/factsheets.asp http://nces.ed.gov/naal/saal.asp United Health Foundation www.americashealthrankings.org/rankings Annie E. Casey Foundation http://datacenter.kidscount.org/ CDC www.cdc.gov/healthliteracy/statedata/index.html 64

65. Helpful References Institute of Medicine (2004) Health Literacy: A Prescription to End Confusion. In Nielson-Bohlman L, Panzer A, Kindig DA, eds. Washington, DC: National Academy Press Schwartzberg JG (2005) Understanding health literacy: Implications for medicine and public health. AMA Press Weiss BD (2003) Health Literacy: A Manual for Clinicians. AMA Foundation Doak CC (1996) Teaching Patients with Low-Literacy Skills, 2 nd ed. JB Lippincott US DHHS (2010) National Action Plan to Improve Health Literacy www.health.gov/communication/HLactionplan The Joint Commission (2008) Strategies for Improving Health Literacy from The Joint Commission Perspectives on Patient Safety. The Joint Commission: Oakbrook Terrace, Illinois

66. Terry Davis, PhD Department of Medicine and Pediatrics LSU Health Shreveport TDavis1@lsuhsc.edu (318)675-8694 Connie Arnold, PhD Department of Medicine and Pediatrics LSU Health Shreveport carnol@lsuhsc.edu (318)675-4324