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

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

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

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

Low Literacy is a National Problem (National Adult Literacy Survey) % Adults with Level 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

Low Literacy Rates By County % Adults with Level 1 Literacy Skills >30% 20%-30% 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 6

Literacy Forecast for 2030 Level 3 skills necessary for current economy From the ETS 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.

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

Health Literacy Tasks 152 tasks (28 health related) • Below Basic: Circle date on 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

Medication Error Most Common Medical Mistake 1. 5 M adverse events (patient error >700, 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) Bureau, 2009; PDR for Non. U. S. Census § Most labels and inserts are in English only Prescription Drugs, Dietary Supplements and Herbs (2007); IMS Health 2005; IOM 2006.

Calculation: A Hidden Problem Understanding Food Labels § You drink this whole bottle of 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 11

Video • Its easy to make a mistake Video • Its easy to make a mistake

Health Literacy 1 st Viewed as Patient Deficit Emphasis Shifts to Health System Skills/ability Health Literacy 1 st Viewed as Patient Deficit Emphasis Shifts to Health System Skills/ability of patients Health Literacy Demands/complexity of health information and system 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)

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

1 st study : Are These Clear? All short and seemingly simple. Not regulated 1 st 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

What Does This Picture Mean? • “Somebody is dizzy” • “Don’t touch this stuff” 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

Does Adding the Words Help? 1 in 10 Adults Struggle With Decoding • “Use 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

Correct Interpretations by Literacy Labels < 6 th Grade 7 th-8 th Grade > Correct Interpretations by Literacy Labels < 6 th Grade 7 th-8 th Grade > 9 th Grade p value 78 86 86 NS 42 65 60 <0. 001 37 73 66 <0. 001 4 36 35 <0. 001 0 6 14 <0. 001 Davis T , Bass P, Wolf M , Parker R. J Gen Intern Med. 2006

Improving Target’s Top 10 Warning Labels n=500 LSU & NW patients Simplified text 2. Improving Target’s Top 10 Warning Labels n=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.

Rx Label Instructions Can patients understand how to take meds after reviewing label instructions Rx Label Instructions Can patients understand how to take meds after reviewing label instructions on actual pill bottles? 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.

“How would you take this medicine? ” n=395 patients in 3 states 48% <9 “How would you take this medicine? ” n=395 patients in 3 states 48% <9 th 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. 21

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

Lessons Learned § Labels simple, but not necessarily clear § Ability to read the 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

More Precise Labels Aid Comprehension Instructions that require interpretation are poorly understood n= 375 More Precise Labels Aid Comprehension Instructions that require interpretation are poorly understood n= 375 pts LA, NW, NY High Low Take 1 pill by mouth every 12 hours. 61 30* Take one tablet by mouth twice daily. 90 70* Take 2 pills by mouth every day. Take 1 with breakfast and 1 with supper. 88 78 Take two tablets by mouth twice daily. 71 33* Take 2 pills in the morning and 2 pills in the evening. 92 76‡ Take 2 pills by mouth at 8 am and 2 pills at 6 pm. 90 76 Metformin, 1000 mg Glyburide, 5 mg *p<0. 001, ‡ p<0. 01 Davis, Bass, Parker, Wolf. J Gen Intern Med, 2009. 24

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

Patient Centered Label Can Improve Understanding and Adherence RCT in 11 FQHCs. 429 pts 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 Standard Label PC Label Understanding 59% 74% Adherence (3 months) 30% 49% State Board of Pharmacy in CA passed legislation for this label 26

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

Recent OTC Research with Drs. Wolf & Parker Few consumers aware of active ingredient 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? 28

DHHS National Action Plan: Road Map to Improve Health Literacy Aim: Make health information DHHS National Action Plan: Road Map to Improve Health Literacy Aim: Make health information and services easier to understand 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)

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

Health Literacy and Cancer Screening 5 year quasi experimental evaluation in 8 FQHC’s – 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 RO 1 CA 115869 -01 A 2; 10/01/07 -9/30/12

Study Clinics: Locations and Characteristics • 3 “parent” FQHCs (+ 5 satellites) • Baseline 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) • Sicily Island (463) • Leesville (6, 763) * CDC. http: //apps. nccd. cdc. gov/State. Cancer. Facts/state. aspx? state=Louisiana • De. Walt DA, J Gen Intern Med. 2004. 19: 1228 -1239 • Medicare Interactive, http: //www. medicareinteractive. org/page 2. php? topic=counselor&page=script&slide_id=199 • New choice Health: • http: //www. newchoicehealth. com/Directory/City. Procedure/Louisiana/Bossier%20 City/28/Mammogram%20 Screening

Colorectal Cancer Baseline Interview Findings N=961, 77% F 67% AA, 56% Lit 89% PCP Colorectal Cancer Baseline Interview Findings N=961, 77% F 67% AA, 56% Lit 89% PCP visit prior year • 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 Davis T, Arnold C, et al. J Rural Health. 2012 33

CRC Screening Barriers Among Rural vs. Urban FQHC Patients Rural Urban 90% 66%* 36 CRC Screening Barriers Among Rural vs. Urban FQHC Patients Rural Urban 90% 66%* 36 46** Received FOBT Info 15% 32%* Completed FOBT 22% 46%* Confident complete FOBT 16% 4%* Believe helpful to find CRC early Received MD rec *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.

Doctor Giving FOBT Kit Dramatically Increases Patient Completion Baseline survey Risk Ratio of Patient Doctor Giving FOBT Kit Dramatically Increases Patient Completion Baseline survey Risk Ratio of Patient Completing FOBT MD recommended CRC Low literacy 4 Adequate literacy 4 MD ever given FOBT kit 49 11 Davis T, Arnold C, Rademaker, Wolf M, et al. J Rural Health. 2012

Breast Cancer Baseline Interview Findings • 98% of all patients had heard of breast Breast Cancer Baseline 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 36

The Influence of Family 88% said if there was one person who told them 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 37

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

FOBT Screening Completion by Study Arm Initial n=961 Repeat n=561 By Arm EUC HL FOBT Screening Completion by Study Arm Initial n=961 Repeat n=561 By Arm EUC HL HL + Nurse p-value* Initial FOBT returned 39% 57% 61% . 02 2 nd year FOBT returned 36% 33% 51% <. 001 Initial Screening Cost *p-values adjusted for age, race, gender, and literacy- take clustering by clinic into account 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 39

Mammography Completion n = 1181 Mammogram By arm EUC HL Nurse p value Initial Mammography Completion n = 1181 Mammogram By arm EUC HL Nurse p value Initial 56% 52% 66% . 04* Repeat 11% 7% 47% <. 0001** 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

Challenges • Community clinics focus on service not research fidelity • Challenging to find 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 41

Lessons Learned from Study • Strong ongoing relationship with CEOs and clinic is essential. 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. FQHC 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 Nurse Manager 42

Wisdom Gained. . the ah ha’s” Life is dynamic - things changed since grant 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 1 st 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.

Engage Patients in Self-Management American College of Physicians’ Guides focused on: • Patient not Engage Patients in Self-Management American College of Physicians’ 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 shmail. lsuhsc. edu/owa/redir. aspx? C=2 a 48068 f 889 c 468 cac 70117 e 09 de 3 d 7 a&URL=http: //www. ac ponline. org/patient_tools Customer Service -800 -338 -2746 ext 2600

Brief Self-Management Counseling 4 -Step Approach: 1. Introduce Guide Ask : Is there anything 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 (shortterm 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 45

Patients Recalled Action Plans Changed Behavior And Problem Solved 225 patients, LSU, UNC, UC-SF Patients Recalled Action Plans Changed Behavior And Problem Solved 225 patients, LSU, UNC, UC-SF Med Clinics (76% minority; DM 9 yrs; BMI 36; A 1 C 8. 6) 2 Week Calls - Recall AP -Behavior sustained -Other behavior 17 Week Visits - Recall AP -Behavior sustained -Other behavior 96% 75% 56% 88% 67% 45% Wallace, Seligman, Davis, Schillinger, Arnold, De. Walt, et al. In press De. Walt, Davis, Schillinger, Seligman, Arnold, et al. In press. • Most patients (89%) chose diet and exercise • Equally effective with low and high literacy patients 46

Will Plan Work in Community Clinics? Test of 2 Approaches to DM Self-Management ‘Carve Will Plan Work in Community Clinics? Test of 2 Approaches to DM Self-Management ‘Carve In vs. Carve Out’ Carve-In: • 9 FQHCs in Missouri, 666 patients, mean age 55 30% African American, 33% low literacy, A 1 c 8. 5, SBP 140 Clinic identifies patient “champion” to review guide and engage patients in action planning. Touch Points Carve-Out: Assumes clinics cannot sustain Clinic distributes guides, refers patients to offsite DM Counselor reviews guide engages patient in action planning 2 weeks 2 months 3 months 9 months 6 months Action Plan Interview 1 year

Carve Out More Feasible and Effective At 1 year carve out patients more likely 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 – Find intervention helpful 7/10 vs 4/10 p<. 001 – Want to continue 76% vs 62% p<. 001 – Achieve glycemic control (hb. A 1 C<7) 48% vs 21% p<. 001

Challenges Conducting Research in Distant Community Clinics • Challenging to “hard wire” interventions –robust 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

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

Adding Literacy as a Variable is Easy • The most commonly used tests • Adding Literacy as a Variable is Easy • The most commonly used tests • 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.

Health Literacy Research Ideas Expand technology for patient outreach – Cell phones for automated 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?

Consumer Technologies Going (Gone) Mobile Figure X. SMS text for UMS instructions. Recent Growth Consumer Technologies Going (Gone) Mobile Figure X. SMS text for UMS instructions. Recent Growth of Mobile Health Apps 2010 4, 921 2012 13, 600 2013 97, 000 Rx Mgmt 450 Android activates 1. 5 million phones a day 87% US adults own cell phone. 1 in 3 use it for health information. Latinos, African Americans, people < 50 and college educated, most likely to gather health information this way. Research 2 Guidance. Mobile Health Market Report 2013 -2017 (Vol. 3) March 4, 2013.

IOM Focused on HL & Health Insurance • Choosing and using health insurance is IOM Focused on HL & Health Insurance • Choosing and using health insurance is unnecessarily complex. • Trust levels for health insurers are very low. • People dread shopping for health insurance (paying taxes is preferable) * • They don’t understand the product (car insurance) • They don’t know the terms - Coinsurance - Allowed amount - Benefit maximum - Out-of-pocket maximum • These complex concepts must be used to estimate cost for services. –Do co-pays count towards the deductible or the out-of -pocket maximum? * ehealth, Inc. , “New Survey Shows Americans Lack Understanding of Their Health Coverage and Basic Health Insurance Terminology, ” January 3, 2008, available at http: //www. insurancenewsnet. com/article. asp? a=top_news&id=89712 54

What’s Our Action Plan? Address the “Red” Skills/ability of patients Health Literacy Demands/complexity of What’s Our Action Plan? Address the “Red” Skills/ability of patients Health Literacy Demands/complexity of health information and system • Rx and OTC labels and Med Guides – standardize and make easier to see, navigate, understand act on • Find low cost sustainable outreach strategies to improve cancer screening & chronic disease self-management • Health insurance - get to Apple Store approach! • Make cost transparent. Clarify smart use. Patiently offer help when customers buy it or are confused or overwhelmed trying to use it. • Employ new technologies but remember technology is a “tool” - it does not replace a nice, knowledgeable person helping you. Health is personal! 55

A Perfect Storm is Approaching Intersection of low literacy and the increasing demands of A Perfect Storm is Approaching Intersection of low literacy and the increasing demands of health care Are We Prepared?

What’s Our Bridge to Action? • How does this talk stimulate your thinking? • What’s Our Bridge to Action? • How does this talk stimulate your thinking? • What strategies could AR develop and test to make health information/ services more user -friendly? • What research opportunities exist?

Useful HL Resources Useful HL Resources

IOM Reports on Health Literacy • Health Literacy: Improving Health, Health Systems, and Health 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, e. Health, 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

AHRQ Toolkits (Agency Healthcare Research and Quality) • Hospital Discharge Project RED (Re. Engineered AHRQ Toolkits (Agency Healthcare Research and Quality) • Hospital Discharge Project RED (Re. Engineered Discharge) (2013) 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/

More Toolkits Pharmacy Assessment Tools and Training AHRQ (2007) Strategies to improve communication between More Toolkits 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_Hea lth_Lit_Online. pdf

Resources For Healthcare Organizations Institute of Medicine (2012 ) Ten attributes of Health literacy Resources For Healthcare Organizations Institute of Medicine (2012 ) Ten attributes of Health literacy Healthcare Organizations iom. edu/Global/Perspectives/2012/Health. Lit. Attributes. aspx Health Literacy Environment of Hospitals & Health Centers (2006 ) 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

Health literacy Websites CDC • www. cdc. gov/healthliteracy/pdf/simply_put. pdf NIH • www. nih. gov/icd/od/ocpl/resources/healthliteracyresearch. Health literacy Websites CDC • 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

Helpful Websites For Nurses Health Literacy Tools, Reports, and Research www. health. gov/communication/literacy/#tools Carolina Helpful Websites For Nurses Health Literacy Tools, Reports, and Research www. health. gov/communication/literacy/#tools Carolina Geriatric Education Center www. med. unc. edu/aging/cgec/Health%20 Literacy CDC Expert Panel Report: HL for Older Adults www. cdc. gov/healthliteracy/pdf/olderadults. pdf

Patient Education Development CMS (2011) Toolkit for making written materials clear and effective https: Patient Education Development CMS (2011) Toolkit for making written materials clear and effective https: //www. cms. gov/writtenmaterialstoolkit/ NCI (2003) Clear and simple developing effective print materials for low literacy readers http: //www. cancer. gov/cancertopics/cancerlibrary/clear-andsimple/page 1 Arnold CL, Davis TC, Ohene Frempong J, et al: Assessment of • newborn screening parent education materials. Pediatrics. 2006; 117: 320 -5. Seligman HK, Wallace AS, De. Walt DA, et al: Developing lowliteracy patient educational materials to facilitate behavior change. Am J Health Behav. 2007 Sep-Oct; 31 Suppl 1: S 69 -78.

Patient Education Materials Institute for Healthcare Advancement 7 easy to read, easy to use Patient Education Materials Institute for Healthcare Advancement 7 easy to read, easy to use guides to better health What To Do: • For Healthy Teeth • When Your Child Gets Sick • When Your Child Has Asthma • When You’re Having a Baby • When Your Child Is Heavy • For Teen Health • For Senior Health www. iha 4 health. org/default. aspx/Menu. Item. ID/191/Menu. Group/_Home. htm American College of Physicians • Helpful Ways To Lose Weight • Caring For Your Heart • Living With Diabetes • Living With COPD www. acponline. org/patient_tools End of Life Decision Making Volandes AE (2010) Medical Decision Making. 30(1): 29 -34

Literacy Tests Used in Healthcare Research • The most commonly used • REALM (Rapid 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.

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

S - TOFHLA PASSAGE A Your doctor has sent you to have a ______ 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 b. empty c. incest d. anemia Scoring: a. is. b. am. c. if. 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 0 -16: Inadequate func. HL 17 -22 Marginal func. HL 23 -36 Adequate func. HL 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 Parker, J Gen Intern Med, 1995

NVS 6 • Questions If you can have 60 grams of carbs for a NVS 6 • Questions 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

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

Ordering Information REALM and REALM-Teen § tdavis 1@lsuhsc. edu TOFHLA, TOFHLA-Spanish and STOFHLA § Ordering Information REALM and REALM-Teen § tdavis [email protected] edu TOFHLA, TOFHLA-Spanish and STOFHLA § http: //peppercornbooks. com/catalog NVS § http: //www. clearhealthcommunication. com/physiciansproviders/newest-vital-sign. html WRAT § http: //www 3. parinc. com/products/product. aspx

Original Citations for Tests REALM § Davis TC, et al. Rapid Estimate of Adult Original Citations for Tests REALM § Davis TC, et al. Rapid Estimate of Adult Literacy in Medicine: A shortened screening instrument. Fam Med 1993; 25(6): 256 -60. REALM-R § Bass PF, et al. Residents' ability to identify patients with poor literacy skills. Acad Med. 2002 Oct; 77(10): 1039 -41. REALM-SF § Arozullah AM, et al. Development and validation of the Rapid Estimate of Adult Literacy in Medicine (REALM) – Short Form. Medical Care. 2007; 45(11): 1026 -33. REALM-Teen § Davis TC, et al. Development and validation of the Rapid Estimate of Adolescent Literacy in Medicine (REALM) Teen: A tool to screen adolescents for below-grade reading in health care settings. Pediatrics. 2006; 118: 1707 -14.

Original Citations for Tests cont… NVS § Weiss BD, et al. Quick assessment of Original Citations for Tests cont… NVS § Weiss BD, et al. Quick assessment of literacy in primary care: the newest vital sign. Ann Fam Med. 2005 Nov-Dec; 3(6): 514 -22. Qualitative Assessment § Chew LD, et al. Validation of screening questions for limited health literacy in a large VA outpatient population. J Gen Intern Med. 2008 March; 23(5): 561 -6. TOFHLA and TOFHLA-S § Parker RM, 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. STOFHLA § Baker DW, et al. Development of a brief test to measure functional health literacy. Patient Education and Counseling. 1999; 38: 33 -42.

RED (Re-Engineered Discharge Toolkit) Addresses Low Health Literacy Aim: effectively prepare patients for hospital RED (Re-Engineered Discharge Toolkit) Addresses Low Health Literacy Aim: effectively prepare patients for hospital discharge RN ‘Discharge Advocate’ works with inpatients to : • Educate them with individualized instruction booklet (also sent to PCP) • Arrange follow-up appointments • Confirm medication reconciliation – Avg total time: 87 min per patient ( 42 min w /patients, 45 min reviewing EMR, communicating w/ medical team & preparing discharge booklet) Clinical Pharm. D calls patients 2 -4 days after discharge to review meds and reinforce discharge plan – Avg total time: 26 min per patient (10 -19 min counseling) – 65% of patients had at least 1 med problem AHRQ March 2013

RED Template for Meds EACH DAY follow this schedule for your medicines What time RED Template for Meds EACH DAY follow this schedule for your medicines What time of day do I take this medicine? Morning Noon Evening Bedtime Only if you need it for Why am I taking this medicine? Medicine name How many do I Amount take? How do I take this medicine?

RED Template for Follow-up Appointments John Doe What is my main medical problem? Chest RED Template for Follow-up Appointments John Doe What is my main medical problem? Chest Pain When are my appointments? Wednesday August 8 at 11: 30 a. m. Thursday, August 16 At 3: 20 p. m. Wednesday September 12 At 9: 00 a. m. Dr. Mark Avery Primary care doctor Dr. Anita Jones Rheumatologist Dr. Lin Wu Cardiologist 100 Main st. 2 nd floor Anytown ST 100 Pleasant Rd, Suite 105 100 Park Rd, Suite 504 Anytown, ST For a follow up appointment For your arthritis To check your heart Office phone number (555) 555 - 5555 Office Phone#: (555) 555 -4444

Project RED (Re. Engineered Discharge) Effective and Cost Effective Randomized control trial 30 days Project RED (Re. Engineered Discharge) Effective and Cost Effective Randomized control trial 30 days after discharge: n=749 RED vs. standard discharge • 30% lower hospital use • 30% more likely to follow-up PCP • 34% lower cost • • mean stay: 2. 7 days 59% low literacy mean age 50 50% AA, 27% White 2007 National Quality Forum “Safe Practice” for hospital discharge based largely on RED Jack BW, Ann Intern Med 2009

A Fun Way to Spot Difficult Words www. lextutor. ca/vp/eng • Vocabulary Profiler color A Fun Way to Spot Difficult Words www. lextutor. ca/vp/eng • Vocabulary Profiler color codes words in English • 1000 most frequently used words (K 1) • Second 1000 frequently used words (K 2) • Academic words frequently used in academic texts (AWL) • Words which are not found on the other lists (off list)

Red & Yellow Warn You Red & Yellow Warn You

www. lextutor. ca/vp/eng www. lextutor. ca/vp/eng

Key Test References § Davis T, Kennen EM, Gazmararian JA, Williams MV. Literacy testing Key Test References § Davis T, Kennen EM, Gazmararian JA, Williams MV. Literacy testing in health care research. In: Schwartzberg JG, Van. Geest JB, Wang CC, eds. Understanding health literacy: Implications for medicine and public health. United States of America: AMA Press; 2005: 157 -179. § White S. Assessing the Nation’s Health Literacy: Key concepts and findings of the National Assessment of Adult Literacy (NAAL). AMA Foundation, 2008.

National and State Literacy & Health Data National Assessment of Adult Literacy • http: 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

Helpful References • Institute of Medicine (2004) Health Literacy: A Prescription to End Confusion. 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 • The Joint Commission (2008) Strategies for Improving Health Literacy from The Joint Commission Perspectives on Patient Safety. The Joint Commission: Oakbrook Terrace, Illinois www. health. gov/communication/HLactionplan

2013 Health Literacy Conferences Institute for Healthcare Advancement Irvine, California: May 8 -10 iha 2013 Health Literacy Conferences Institute for Healthcare Advancement Irvine, California: May 8 -10 iha 4 health. org Health Literacy Institute (great conference) Freeport, Maine: June 2 -5 healthliteracyinstitute. net/ Boston University Health Literacy Annual Research Conference (HARC) Washington, D. C. : October 28 -29 www. bumc. bu. edu/healthliteracyconference/

Terry Davis, Ph. D Department of Medicine and Pediatrics LSU Health Shreveport TDavis 1@lsuhsc. Terry Davis, Ph. D Department of Medicine and Pediatrics LSU Health Shreveport TDavis [email protected] edu (318)675 -8694 Research Associate: Robert C. Ross, BS RRoss [email protected] edu (318)675 -4584

Plain Language Summary • Health literacy is a problem for people in Arkansas. • Plain Language Summary • Health literacy is a problem for people in Arkansas. • Health literacy is a problem for health care. • Research has made medicine labels easier to understand. • Research has improved cancer screenings in rural centers. • Cell phones and electronic medical records may be the next step to better health literacy.