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Health Literacy Research The Next Generation

This research focuses on the relationship between patient literacy, health knowledge, behaviors, outcomes, and navigation skills. It also highlights the increasing demands and expectations of the healthcare system.

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Health Literacy Research The Next Generation

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  1. Health Literacy Research The Next Generation University of Arkansas Health Literacy Research Grand Rounds July 22, 2013 Terry Davis, PhD Professor of Medicine and Pediatrics LSUHSC-S

  2. DISCLOSURE STATEMENT Research funding: Agency for Healthcare Research and Quality American Cancer Society American College of Physicians Foundation McNeil Pharmaceutical Unrestricted educational grant Advisory Board for icons on OTC pain medication National Cancer Institute Stocks: Johnson & Johnson Abbott Laboratories

  3. Literacy and Healthcare:What We Know • Patient literacy linked to health knowledge, behavior, outcomes & navigation skills • 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 AR ranks 39th in literacy and 48th in overall health, 44th obesity , 38th infant mortality and 43rd in preventable hospitalizations United Health Foundation, Department of Education

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

  5. Low Literacy is a National Problem(National Adult Literacy Survey) % 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% National Institute for Literacy 1998

  6. Low Literacy Rates By County % Adults with Level 1 Literacy Skills >30% 20%-30% 15% to 20% < 15% 22% Arkansas Adults are Level 1 National Institute for Literacy 1998

  7. Literacy Forecast for 2030 Level 3 skills necessary for current economy From the ETS report America’s Perfect Storm: Three Forces Changing Our Nation’s Future written by Irwin Kirsch, Henry Braun, Kentaro Yamamoto and Andrew Sum. The full report is available from ETS at www.ets.org/stormreport.

  8. 1st National Assessment of Health LiteracyAssessed functional skills in clinical, preventive, and navigational tasks n=19,000 U.S. Adults (quantitative literacy) Proficient 12% (13%) Below Basic Intermediate 53% (33%) 14% (22%) Below basic Hispanic: 41% Native American: 25% Adults > 65: 29% Basic 22% (33%) Average HS grad National Assessment of Adult Literacy (NAAL): National Center for Educational Statistics, U.S. Dept. of Education, 2003. Medicaid

  9. Health Literacy Tasks 152 tasks (28 health related) • 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

  10. 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 >100,000 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.

  11. Calculation: A Hidden ProblemUnderstanding 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 > 9th grade 37% math > 9th grade Rothman R, Am J Prev Med, 2006

  12. Video • Its easy to make a mistake

  13. Health Literacy 1st Viewed as Patient Deficit Emphasis Shifts to Health System Health Literacy 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 is a safety issue * US DHHS, May 27, 2010. (www.health.gov/communication/HLactionplan)

  14. Baby Step Research Our team’s story of putting 1 foot in front of the other Curiosity -> Assessing Problems -> Interventions

  15. 1st study : Are These Clear? All short and seemingly simple. Not regulated by FDA or State Boards of Pharmacy. Davis T , Bass P, Wolf M , Parker R. J Gen Intern Med. 2006

  16. What Does This Picture Mean? • “Somebody is dizzy” • “Don’t touch this stuff” • “Take anywhere” • “Chills or shaking” • “Having an experience with God” Wolf M, Davis T, Parker R, Bass P. Am J Health-System Pharmacy. 2006

  17. Does Adding the Words Help? 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

  18. Correct Interpretations by Literacy Davis T , Bass P, Wolf M , Parker R. J Gen Intern Med. 2006

  19. Improving Target’s Top 10 Warning Labelsn=500 LSU & NW patients Simplified text 2.6 X more likely to be correctly interpreted , simplified text + icon 3.3 times more likely. Wolf M , Davis T, Bass P, Parker R. Arch Intern Med, 2010.

  20. Rx Label Instructions Minimum Federal oversight for Rx labels. State Boards of Pharmacy regulate labeling but provide little guidance Davis T, Wolf M, Bass P, Parker R. Ann Intern Med, 2006. Can patients understand how to take meds after reviewing label instructions on actual pill bottles?

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

  22. John Smith Dr. Red Take two tablets by mouth twice daily. Humibid LA 600MG 1 refill “Show Me How Many Pills You Would Take in 1 Day” Rates of Correct Understanding vs.Demonstration “Take Two Tablets by Mouth Twice Daily” 89 80 84 71 63 35 Wolf M, Davis T, Parker R. Patient EducCouns. 2007

  23. Lessons Learned • Labels simple, but not necessarily clear • Ability to read the Rx label does not guarantee correct interpretation • Mistakes are more likely the more meds patients take • Some pts over complicate- take meds more times daily than necessary • Approximately half of physicians don’t mention dose, timing, duration, and possible side effects of meds. • Instructions need to be tested with patients

  24. More Precise Labels Aid ComprehensionInstructions that require interpretation are poorly understood n= 375 pts LA, NW, NY *p<0.001, ‡ p<0.01 Davis, Bass, Parker, Wolf. J Gen Intern Med, 2009.

  25. Correct Interpretation of Standard vs. Patient Centered Label N=500 (LSU & NW), Low Lit: 52%, AA: 64%, Avg. 3 Meds Standard PCL PCL & Graph Take 1 pill by mouth Take 1 pill in the morning, Take 1 pill in the morning, 3 times daily 1 pill at noon, and 1 pill at noon, and 1 pill in the evening 1 pill in the evening 44%* 91% 91% Take 2 pills by mouth Take 2 pills in the morning Take 2 pills in the morning twice daily and 2 pills at bedtime and 2 pills at bedtime 77%* 84% 88% *p<.001 Wolf M ,Davis T, Parker R. Medical Care. 2011.

  26. Patient Centered Label Can Improve Understanding and Adherence RCT in 11 FQHCs. 429 pts w DM and/or HTN. Average 5 meds Mean age 52, 28% W, 39% low literacy State Board of Pharmacy in CA passed legislation for this label

  27. OTC Health Literacy Challenge Health Literacy Wal-Mart has 80 sq. feet of pain meds Most people not aware of active ingredient or its importance

  28. Recent OTC Research with Drs. Wolf & Parker Few consumers aware of active ingredient • Majority of consumers don’t read OTC instructions • People have their own schematic for taking OTCs • Would revised label increase awareness, understanding?

  29. DHHS National Action Plan: Road Map to Improve Health Literacy Aim: Make health information and services easier to understand and use 7 Goals and high priority strategies • Develop and disseminate health information that is accurate, accessible, and actionable. • Promote changes in healthcare delivery system • Build partnerships, develop guidance, change policies • Increase research, and evaluation of interventions * US DHHS, May 27, 2010. (www.health.gov/communication/HLactionplan)

  30. Research in Rural and Community Health Centers • Few studies conducted in rural areas • In 2012 HRSA required “meaningful use” of EHR

  31. Health Literacy and Cancer Screening 5 year quasi experimental evaluation in 8 FQHC’s Test the effectiveness of health literacy interventions to improve initial and repeat use of CRC and breast cancer screening Explore patient, provider and system factors that facilitate or impede initial and repeat screening. We added cost effectiveness * 1 RO1 CA115869-01A2; 10/01/07-9/30/12

  32. Study Clinics: Locations and Characteristics 3 “parent” FQHCs (+ 5 satellites) Baseline screening rates are extremely low 5-9% mammography 1-2 CRC Patients lack adequate insurance 59% of FQHC patients have no insurance 11% have private insurance • Gilliam (183) • Minden (13,027) • Shreveport (200,199) & Bossier City (61,306) • Tallulah (9,189) • Wisner (1,140) • SicilyIsland (463) • Leesville (6,763) * CDC. http://apps.nccd.cdc.gov/StateCancerFacts/state.aspx?state=Louisiana • DeWalt DA, J Gen Intern Med. 2004. 19:1228-1239 • Medicare Interactive, http://www.medicareinteractive.org/page2.php?topic=counselor&page=script&slide_id=199 • New choice Health: • http://www.newchoicehealth.com/Directory/CityProcedure/Louisiana/Bossier%20City/28/Mammogram%20Screening

  33. Colorectal CancerBaseline Interview Findings Almost all patients (96%) had heard of CRC 91% would want to know if they had CRC Only 39% had received a physician recommendation 29% had been given a kit 28% previously completed an FOBT Over half (57% )not rescreened in > 3 years Most common reasons for not getting screened 29% put it off 25% didn’t think it was needed N=961, 77% F 67% AA, 56% Lit 89% PCP visit prior year Davis T, Arnold C, et al. J Rural Health. 2012

  34. CRC Screening Barriers Among Rural vs. Urban FQHC Patients *p<.0001, ** p=0.03 Davis TC, Rademaker A, Bailey SC, et al. Contrasts in Rural and Urban Barriers to Colorectal Cancer Screening. Am J Health Behavior. May 2013; 37(3):289-98.

  35. Doctor Giving FOBT Kit Dramatically Increases Patient Completion Baseline survey Davis T, Arnold C, Rademaker, Wolf M, et al. J Rural Health. 2012

  36. Breast CancerBaseline Interview Findings 98% of all patients had heard of breast cancer 84% seen advertisements that encouraged getting tested 82% had received prior recommendation (78% AL vs. 59% LL) knew someone who had breast cancer 93% said they knew what a mammogram was; of these 100% defined it correctly Most common misconception 71% believed screening mammogram needed to begin before age 40 77% had ever had a mammogram

  37. The Influence of Family 88% said if there was one person who told them to get tested they would. Those included: • 38% Child • 19% Mother • 14% Sister

  38. Making Information and Services Easy to Obtain, Understand, and Use Recommendation FOBT & no cost mammogram Pamphlets (5th grade) Short videos that tell story Simplified FOBT instructions (3rd grade) Nurse manager to teach & support with follow-up calls

  39. FOBT Screening Completion by Study Arm Initial n=961 Repeat n=561 *p-values adjusted for age, race, gender, and literacy- take clustering by clinic into account Initial Screening Cost Incremental cost of HL per additional person screened $250 over EUC Incremental cost of Nurse arm over EUC $1337 Repeat (Annual) Screening Cost Incremental cost of Nurse arm over EUC $2811 CRC baseline: 1-2% CRC screen - 14% needed diagnostic colonoscopy - 8 patients had polyps removed

  40. Mammography Completion n = 1181 Mammogram Incremental cost of nurse arm per additional person screened compared to HL was $2,644 Mammography baseline: 10-12% Breast Cancer screen - 10 patients had breast cancer *Adjusted for race, marital status, literacy, and self-efficacy **Adjusted for race, education, marital status, seen doctor, and ever had a mammogram

  41. Challenges • Community clinics focus on service not research fidelity • Challenging to find qualified RAs in rural areas • Hiring RAs from clinic staff is a “Catch 22” • High physician turnover in rural areas • Follow-up calls are feasible but phones commonly disconnected then reconnected. • Mailed reminders and FOBT kits years 2 and 3 not sufficient. • Patients lose FOBTS / forget to complete. • At LSU Wait for diagnostic colonoscopy up to a year. LSU Colonoscopy Referrals

  42. Lessons Learned from Study • Strong ongoing relationship with CEOs and clinic is essential. • Including providers & patients in material development is key. • Clinic in-service helps inform and enlist staff. • RA giving recommendation and FOBT before PCP visit is feasible and well received by providers and patients. • Playing videos revealed RA and patient barriers – pamphlets and FOBT kits were easier to use as teaching tools • Nurse follow-up call to motivate and problem solve screening completion was time consuming. • Unlike mammography, patients did not seem to feel pride when completing FOBT FQHC Patients Nurse Manager

  43. Wisdom Gained ..the ah ha’s”Life is dynamic - things changed since grant written in 2007 • In 2007 concern over reaching poor and rural patients by phone. (now 87% U.S. adults have a cell phone) • FQHC patients can be reached by phone – cells may be disconnected but reconnected at first of next month. Several attempts to reach patients are often needed. • When grant written, colonoscopy was viewed as test to be promoted. • Now increasing emphases on practical, CRC screening using FOBTs. (It is the 1st line screening reported in numerous studies abroad and in large US health systems.) • ACS, USPSTF & professional organizations have updated their recommendations for CRC screening • Now recommend immunochemical tests that have superior sensitivity such as the FIT • In 2012 HRSA requires reporting CRC screening as standard performance measures and meaningful use of EHR.

  44. Engage Patients in Self-Management American College of Physicians’ Guides • Guides focused on: • Patient not disease • ‘Need to know and do’ • Help patients change health behavior: • Increase knowledge and confidence managing disease • Solve self-care problems • Over 5 million distributed nationally • www.acponline.org/patient_tools • Customer Service -800-338-2746 ext 2600

  45. Brief Self-Management Counseling 4-Step Approach: 1. Introduce Guide Ask : Is there anything you would like to do this week to improve your health? 2. Help Patient Set Action Plan (short-term achievable goal-pt chooses ) 3. Assess confidence - 7 on 10 point scale 4. Check on progress Maintain, modify or set new action plan Brief video to train clinic staff: http://www.acpfoundation.org/hl/diabguide.htm Lorig, J Am B Fam Med, 2006. Davis T, Seligman H, Dewalt D, Arnold C, et al. J Prim Care Community Health. 2012

  46. Patients Recalled Action Plans Changed Behavior And Problem Solved 225 patients, LSU, UNC, UC-SF Med Clinics (76% minority; DM 9yrs; BMI 36; A1C 8.6) • Most patients (89%) chose diet and exercise • Equally effective with low and high literacy patients Wallace, Seligman, Davis, Schillinger, Arnold, DeWalt, et al. In press DeWalt, Davis, Schillinger, Seligman, Arnold, et al. In press.

  47. Will Plan Work in Community Clinics?Test of 2 Approaches to DM Self-Management‘Carve In vs. Carve Out’ • 9 FQHCs in Missouri, 666 patients, mean age 55 30% African American, 33% low literacy, A1c 8.5, SBP 140 3 months Action Plan Interview Carve-In: Clinic identifies patient “champion” to review guide and engage patients in action planning. Carve-Out: Assumes clinics cannot sustain Clinic distributes guides, refers patients to offsite DM Counselor DM Counselor reviews guide engages patient in action planning Touch Points

  48. Carve Out More Feasible and Effective At 1 year carve out patients more likely to: • Recall telephone calls 79% vs 46% p<.001 • Set action plans 4.6 vs 1.8 p<.001 • Find intervention helpful 7/10 vs 4/10 p<.001 • Want to continue 76% vs 62% p<.001 • Achieve glycemic control (hbA1C<7) 48% vs 21% p<.001

  49. Challenges Conducting Research in Distant Community Clinics • Challenging to “hard wire” interventions –robust implementation methods needed • “Efforts of Diabetes Champion “varied widely b/t clinics • “Buy in” from PCPs is key • Staff and physician turnover after orientation • Need to find low cost ,reliable, effective outreach strategies

  50. Health Literacy Funding OpportunitiesIOM Health Literacy Model Guides Interventions 2004: PAR – NIH (13 institutes) issued program announcements focused on “Understanding and Promoting Health Literacy” (re-issued 2013-2016), “Addressing Health Disparities” (2013-2016) and “Mobile Health Tools to Promote Communication” (2011-2014)

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