Terry Davis, PhD Professor of Medicine & Pediatrics LSUHSC-S Collaborative Diabetes Education Conference January 30, 2009 Health Literacy Is Fundamental To Diabetes Education & Counseling

What’s The Problem? Patients’ Education, Literacy, Language Unnecessarily Complex Health Information Unnecessarily Complex Health Information

Problems Are Not Going Away California drop out rate 30%

Low Literacy Rates By County % Adults with Level 1 Literacy Skills National Institute for Literacy % California Adults are Level 1

“Public health emphasis is on getting information ‘out’ to people not whether it has been understood and used.” “Health care professionals do not recognize that patients do not understand the health information we are trying to communicate.” Dr. Richard Carmona, U.S. Surgeon General Mentioned health literacy in 200 of last 260 speeches

Health Education Needs To Be Improved 90 million adults have trouble understanding and acting on health information ● Health information is unnecessarily complex Patient Education is often NOT: Easy to read, understand, act on Organized from patients’ perspective Focused on behavior as well as knowledge

What is it Like? These instructions simulates 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”

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.

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 cabnet. A mild soap like dishwasher detergent will help remove grease or oil.

Low Literate Diabetic Patients Less Likely to Know Correct Management* Percent Need to Know: symptoms of low blood sugar Need to Do: correct action for symptoms of low blood sugar *Williams et al., Archive of Internal Medicine, 1998 Low Moderate High Low Moderate High

Video It’s hard to be a patient Health Literacy: An individuals ability to obtain, process and understand health information and services and make appropriate health care decisions and access and navigate the health care system.

1 st Health Literacy Assessment Basic Below Basic Proficien t 13% 12% 53% 22% National Assessment of Adult Literacy (NAAL): National Center for Educational Statistics, U.S. Department of Education, Intermediate Average Medicare Hispanic n=19,000 U.S. Adults

Health Literacy Tasks Below Basic: Circle date on doctor’s appointment 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 Patient error (>500,000 adverse events, $1 Billion) 3 billion Rx written/year Elderly fill 27 Rx/year, see 8 physicians Pharmacists/physicians not adequately counseling Most labels and inserts are in English only. IOM 2006 Report: Poor patient comprehension and subsequent unintentional misuse is a root cause of medication error and worse health outcomes

40 years ago 1 doctor 1 pharmacist No forms In-patient 650 medications Today Multiple providers Chain drug stores Numerous forms Out-patient 24,000 meds Changing Times: Healthcare is Increasingly Complex Today’s patients need higher literacy

Video It’s easy to make a mistake.

“How would you take this medicine?” 46% did not understand instructions ≥ 1 labels 38% with adequate literacy missed at least 1 label 395 primary care patients in 3 states (Ann Intern Med. 19 Dec, 2006, Davis, Wolf, Bass, Parker)

“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 71 35

Is Health Information Unnecessarily Complex? Patient Education is often NOT: Easy to read, understand, use Organized from patient ’ s perspective Focused on behavior as well as knowledge * IOM Report: A Prescription to End Confusion, 2004

Hidden Problems: Pamphlets and Videos Organized using medical model not patient-centered model (focus on need to know and do) Scientific rather than personal tone (“talking heads”) Often too long, written on too high a level Illustrations complex, confusing or “do not look like me” Lack of attention to ‘tone,’ patient emotions Lack of patient and provider input Who will give to patient, when? Teachable moment

Developing User-Friendly Materials Is not rocket science But harder and more tedious than it seems

Avoid a Common Mistake Most materials not organized from patients’ perspective: Medical model Description of problem Statistics on incidence and prevalence (tables) Treatment forms and efficacy It is more helpful to use: Newspaper model Gives most important information first Social Cognitive Model Moves beyond knowledge to short term behavioral goals Attends to motivation, self-efficacy, problem solving Doak, 1996; Seligman, 2007

Creating User Friendly Patient Education Materials Check reading level (tools, spelling, options, readability) Aim for <8 th grade Ask following 5 questions

Is The Layout User-Friendly?

Do Illustrations Convey The Message?

Is the Message Clear?

Is The Information Manageable?

Does Reader See This Is “Meant for Me”?

Self-Management Education Is Needed Priority Area For National Action Current health care system is not doing the job* Over 126 million Americans suffer from one or more chronic illnesses (healthcare costs > $1 trillion/year) 90 million adults have trouble understanding and acting on health information Majority of patients do not receive appropriate education or care Patient safety may be compromised Patients need support for self-management and systematic follow-up ‡ *IOM; ‡ Wagner, Chronic Disease Model 1998; Sarkar, 2008

Effective Self-Management Education Must go beyond knowledge and focus on helping patient change behavior Stress benefits and motivation for behavior change Incorporate goal setting (best if goals are small, short term, easily achievable baby steps) Assesses patient confidence Offer support and follow-up Lorig 2003, 2006; Seligman, 2007; Bodenheimer, 2007

Improving Chronic Disease Education Lessons Learned – Develop with patients and providers (to help insure usefulness, clarity and comprehension) – Focus on “need to know & do” vs. “nice to know” – Emphasize benefits – Give to patients in a teachable moment – Accompany with brief counseling, support and follow-up Seligman, 2007

Purpose of the ACPF Project To develop novel strategies to support diabetes self- management among patients with limited health literacy. Focus on: Patient not disease English and Spanish Being user-friendly for patients and staff

Why Focus On Diabetes? Diabetes is prevalent 23 million Americans have diabetes 1.6 million new adult cases each year 7 th leading cause of death in U. S. Substantial self-management is required Many patients have difficulty carrying out recommended care Knowledge alone does not improve outcomes

Project Team National team of diabetes, health literacy and communication experts Reviewed existing diabetes patient education materials Conducted focus groups in 5 states in public and private sector –Over 100 patients –Over 100 providers (physicians, D.E. nurses, pharmacists, and dieticians)

Writing The Diabetes Guide 800 photographs convey messages >70 interviews with patients Spanish version with culturally- appropriate photos “El desayuno le ayuda a su cuerpo a sentirse satisfecho y le da energía. También le ayuda a controlar su diabetes.”

Lessons Learned From Patients Want information focused on how to manage & not why Want practical strategies for hunger, eating out, exercise Patients rarely called doctor’s office for help - may not know the questions to ask Patients wanted support Patients often know more than they do – have difficulty with problem solving 18 focus groups * Seligman, et al. Am J Health Behav 2007; 31 (Suppl 1): S69-S78

Lessons Learned: Physicians Want to inform patients on: severity of diabetes associated health risks meaning of A1c tests importance of checking blood sugar regularly 9 focus groups Patients and providers want different information - Important to consider needs of both. * Seligman, et al. Am J Health Behav 2007; 31 (Suppl 1): S69-S78

Lessons Learned: DM Educators Care is often not coordinated between DM educators & physician Insurance may not pay for diabetes education Patient materials often not concise 5 focus groups

Hidden Problems Physicians want to teach patients – but Feel they lack time (reimbursement) May give information that is not useful May overwhelm patients with too much information or give too little Young physicians often use scare tactics; older physicians may be fatalistic Fear is not effective long term * Seligman, et al. Am J Health Behav 2007; 31 (Suppl 1): S69-S78

The Guide is Focused on Doing! –Eating* –Exercise* –Monitoring blood sugar –Keeping track of meds –Insulin * Most important to patients

Pictures Help Tell The Story Too much Right size

Photographs Speak to Patients Our GuideStandard Guide

Photographs are Preferred to Clip Art Standard Guide ACPF Guide

Guide Is Patient-Centered Warm, conversational tone People real, healthy looking Example: “Having diabetes is life- changing.” “People with diabetes say they sometimes feel overwhelmed. Some people feel alone. You are not alone. Millions of people have diabetes.”

Tone Is Important Because food intake affects the body's need for insulin and insulin's ability to lower blood sugar, diet is the cornerstone of diabetes treatment. - FDA Diabetes Guide (12 th grade level) Eating right is the most important way to control your blood sugar. Your blood sugar is affected by what you eat, when you eat, and how much you eat. - ACP-F Guide (5 th grade level)

Our Guide is Practical and Personal Patients’ voices illustrate concrete, practical tips Patients suggest achievable goals Real photos of people with diabetes help tell the story

Focus Is On Doing ‘You Can Do It’ checklist at end of each chapter Concrete examples of successful action plans Emphasis on small steps and patient choice

Evaluation Study 225 patients, 3 sites, English and Spanish (76% minority; DM 9yrs; BMI 36; A1C 8.6) 1.Introduce the guide Ask : Is there anything you would like to do this week to improve your health? 1.Brief counseling by non-medical staff to help patient set Action Plan 2.Follow-up call at 2 weeks and 4 weeks, visit at weeks Wallace, Seligman, Davis, Schillinger, Arnold, DeWalt, et al. In press DeWalt, Davis, Schillinger, Seligman, Arnold, et al. In press.

What is an Action Plan? Very specific, easy-to-achieve, short-term activity a patient chooses to do to reach a long- term goal –Long-term goal: lose weight –Action plan: I will walk around the block before I sit down to watch TV after dinner 3 times during the next 7 days. * Lorig, J Am B Fam Med, 2006.

Action Plans Can Be Powerful Created by the patient (Physician only acts as facilitator). Magic of a “Baby Step” It doesn’t matter what the step is Personally relevant and immediate Engages patient in self- care Increases self-efficacy Teaches problem-solving

Samples of Patient Baby Steps “I will dance like I saw in the book everyday for 2-3 songs on the radio.” “ I will eat ½ of a candy bar instead of a whole one for my afternoon snack 3 days next week.” “Instead of eating fast food every night, I will start cooking one night a week.” “Two days a week I will eat sugar free ice cream instead of the regular ice cream I normally eat every night.”

Significant Improvement In Pre- and Post-tests* Knowledge Self-care of diabetes Problem solving ability Confidence Diabetes distress Taking ownership of health care *p<0.01 Wallace, Seligman, Davis, Schillinger, Arnold, DeWalt, et al. In press

Patients Recalled Action Plans Changed Behavior And Problem Solved 2 Week Calls - Recall AP -Behavior sustained -Other behavior 96% 75% 56% 4 Week Calls - Recall AP -Behavior sustained -Other behavior 94% 69% 34% Final Visits - Recall AP -Behavior sustained -Other behavior 88% 67% 45% n=250 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.

Patient Response To Guide Likely to keep using98% Likely to bring to visits70% Recommended Guide97% “ It ’ s different from any diabetic material I have received … more information I wanted to know. ” “ I love how this book brought things to mind that I never thought about … like dancing ” “ Before I felt overwhelmed. It encouraged me to just start ….to want to do better for myself. ”

Goal Setting: Lessons Learned Chart documentation of self- management goal(s) – QI performance measure Goal setting with a provider was not a familiar strategy Patients 1 st goals too general. “I want to lose weight” Assessing confidence helps patients create achievable Action Plan Many physicians expect too big a step or too many steps

1. Introduce Guide Ask : Is there anything you would like to do this week to improve your health? 2. Help Patient Set Action Plan Assess confidence on 10 point scale (if <7 - redo) 3. Check on progress Maintain, modify or set new action plan * Lorig, J Am B Fam Med, 2006; Bodenheimer, Clin Diabetes, 2007 How To Do The “3 Step” Using Guide With Patients

Key Point #1 The Patient is in Charge –Patients choose areas motivated to work on –Patients know what is really tough for them & what is more doable (e.g. “I always crave sweets after dinner.”)

–Too often patients feel they are unable to do what doctors tell them to do –Goal: make your patients feel good about their ability to make healthy behavior changes –“On a scale of 0-10, where 0 is not at all sure and 10 is entirely sure, how sure are you that you will be able to….” –If <7  REDO! Key Point # 2: Action Plans are Easy-to-Achieve

Help patient turn goal - lose 10 lbs - into Action Plan – I will walk 2 blocks after work 3 times next week What Walk How much 2 blocks When (time of day) After work How often 3 times Key Point # 3: Action Plans are Very Specific

Video Action Plans are key to success

Time Needed For Action Plan Discussion Initial AP discussions last an average of 6.9 minutes Patients often need a few minutes to come up with a plan – confused by the doctor asking them what they want to work on Steep learning curve: down to about 2 minutes with practice MacGregor, J Amer B Fam Med, Lorig, J Amer B Fam Med, 2006.

Baby Steps: Lessons Learned Focus on small changes helps patients AND providers problem-solve and feel positive. Baby steps teach skills to change behavior Providers appreciate structure of “baby step” approach to patient ed. Apply baby step method to their approach to patients (and their own lives).

The Guide Is A Hit 40,000 mailed with the Annals of Internal Medicine > 1 million copies distributed Guide and Action Plan Video Distributed by ACPF: (ask for Stacey Dailey) Box of 40 = $66 Video free of charge

7 Steps to Developing User-Friendly Health Materials 1.Review literature and current materials 2.Conduct focus groups of patients and providers 3.Develop ‘mock up (limit scope to “need to know and do”) 4.Improve drafts with iterative cognitive interviews 5.Continue to tweak mock ups 6.Consider distribution 7.Evaluate feasibility, efficacy

Practice Recommendations Focus on patients’ ‘need to know and do’ vs. ‘nice to know’ Use teaching tools (pt ed handouts, “brown bag” meds) Help patients create action plans ‘Teach back’ to confirm understanding