Pre-Conference Workshop II Can Addressing Health Literacy Help - - PowerPoint PPT Presentation

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Pre-Conference Workshop II

Can Addressing Health Literacy Help Eliminate Health Disparities?

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Accreditation

Participation in this activity earns 1.75 contact hours. To receive credit, participants must complete an evaluation form at the conclusion of this session.

UAN: 0024-0000-14-002-L04-P

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At the completion of this activity, participants will be able to:

• Discuss prevalence of low literacy and low health literacy in Louisiana and U.S.;
• Discuss the impact of low health literacy on health disparities;
• Outline strategies to integrate Health literacy assessment into disparities research;
• Identify practical strategies to improve health communication;
• List literacy and culturally appropriate patient education methods and resources; and
• Discuss ways health literacy research can promote efforts to eliminate health disparities

and promote healthcare equality.

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SPEAKERS

Terry C. Davis, PhD Connie Arnold, PhD

Can Addressing Health Literacy Help Eliminate Health Disparities?

Xavier University Health Disparities Conference

New Orleans March 10, 2014

Terry Davis, PhD

Professor of Medicine and Pediatrics

Connie Arnold PhD

Associate Professor of Medicine LSUHSC-S

DISCLOSURE STATEMENT

Research funding:

– Agency for Healthcare Research and Quality – American Cancer Society – American College of Physicians Foundation – National Cancer Institute – NIH, LA Clinical and Translational Science Center

Stocks:

– Johnson & Johnson – Abbott Laboratories

Why Focus on Health Literacy?

• Limited health literacy is linked to health disparities
• Cultural & linguistic differences affect health literacy

& contribute to health disparities

• 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 49th in literacy and 49th in overall health (tied with MS)

49th obesity, infant mortality and 48th in preventable hospitalizations

Regina Benjamin, 2010; DHHS, 2007 • United Health Foundation, Department of Education; IOM 2007

Questions for Today

• Can health literacy research promote efforts to

eliminate health disparities & promote health care equality?

• Is there an imbalance in your client’s 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?

“Providers do not recognize that patients do not understand the health information we are trying to communicate.” “Public health emphasis is

• n 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

Need to Blend Health Literacy & Health Disparities Research

• To date, health literacy & health disparities

research have remained largely separate

• Both demand multi-disciplinary approaches to

interventions “that matter”

• In today’s culturally diverse & technologically

advanced society, health messages that don’t consider culture, history, environment, & literacy levels of communities with health disparities are destined to fail

John Ruffin, NIH Minority Health & Disparities, 2011

Skills/ability

• f patients

Demands/complexity

• f health information

and system

* 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 is a safety issue

Health Literacy 1st Viewed as Patient Deficit Emphasis Shifts to Health System

DHHS National Action Plan: Road Map to Improve Health Literacy

Aim: Make health information and services easier to understand and use Goals and high priority strategies:

• Develop and disseminate health information

that is accurate, accessible, and actionable.

• Promote changes in healthcare delivery system
• Incorporate accurate health information in child care to

university level education

• 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)

Literacy Requirements Change with Demands of Society

• Signing name (civil war)
• 3rd, 4th grade education (CCC, WWII)
• 8th grade education (war on poverty)
• HS diploma/GED (today’s GI)
• College or more (emerging global

economy)

• Internet skills will be in 2016 national

assessment

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

Low Literacy is a National Problem

(National Adult Literacy Survey)

> 30 % 20 % to 30 % 15% to 20 % < 15%

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%

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%

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”

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

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%

75% of U.S. 17-23 Year Olds Not Fit for Military

• Inadequate education

– 1 in 4 lack high school diploma. – An additional 30% of H.S. graduates fail Armed Forces Qualifying Test.

• Physically unfit

– 27% are too overweight. – 32% have health problems (asthma, mental health, recent treatment ADHD).

• Criminal record

– 10% have prior conviction for felony

• r serious misdemeanor (1 in 30 in

prison).

Health Literacy and Healthcare

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.

1st 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)

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

• n 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

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 > 9th grade – 37% math > 9th grade

Rothman R, Am J Prev Med, 2006

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. 2nd edition. Chicago: AMA Foundation and AMA, 2007. www.ama-assn.org/ama1/pub/upload/mm/367/healthclinicians.pdf

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.

Do Patients Understand How To Safely Take Their Medication?

What Does This Picture Mean?

• “Somebody is dizzy”
• “Don’t touch this stuff”
• “Take anywhere”
• “Chills or shaking”
• “Having an experience with God”

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

Rx Label Instructions

Can patients understand how to take meds after reviewing instructions on pill bottles?

Davis, Wolf, Bass, Parker. Ann Intern Med, 2006.

“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% <9th grade reading, averaged 1.4 meds

Davis, Wolf, Bass, Parker. Ann Intern Med, 2006.

“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

20 20 40 40 60 60 80 80 100 100

Low Low Mar argi ginal al Adequ dequate

Correct t (%) Patien ent Liter erac acy Level

Under erstandi anding ng Demons

• nstrat

ation

• n

Rates of Correct Understanding vs. Demonstration “Take Two Tablets by Mouth Twice Daily”

71 35 84 63 89 80

Patient Centered Label Can Improve Understanding and Adherence

State Board of Pharmacy in CA passed legislation for this label

Sta nda r d L a be l PC L a be l Unde r sta nding 59% 74% Adhe r e nc e (3 mo nths) 30% 49%

RCT in 11 FQHCs. 429 pts w DM and/or HTN. Average 5 meds Mean age 52, 28% W, 39% low literacy

The Problems With Food Labels

Difficult to navigate and interpret  What is the essential info? How and where should it be displayed?

Efforts to Clarify Label May Add Complexity

37

Why Integrate Health Literacy Assessment in Disparities Research

• Years of schooling is NOT a good measure of literacy level (reading

comprehension may be 2-5 grade levels < education level).

• In research, literacy is an easy, yet informative variable to add.
• 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.

Health Literacy Assessment Mediates Racial Disparities in Research

• Prostate Cancer Stage of Presentation
• African American men 2x more likely to present with stage D prostate cancer than

whites, but after adjusting for literacy, race was no longer a factor1

• HIV Medication Adherence
• African Americans 2.4x more likely to be non-adherent to HIV medication than

whites, but when health literacy was included in analysis, there was NO difference in adherence by race2

• Diabetes Medication Adherence
• African Americans are less adherent to diabetes medicines compared to whites

(controlling for SES), but when health literacy is added to analysis, race is no longer directly associated with adherence4

• End of Life
• African American patients preferred more aggressive care at end of life, but when

health literacy was included in analysis, health literacy, NOT race, predicted preferences for care3

1) Bennett, Davis, J Clin Oncol, 1998. 2) Osborn, Davis, Wolf, Am J Prev Med, 2007. 3) Volandes, J Palliative Med, 2005. 4) Osborn C, J Health Comm, 2011

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.

• 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
• utcomes 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

Strategies to Improve Health Communication, Patient Education & Consent

Put yourself in patient’s shoes

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.
• In a study of 250 orthopedic patients at 1st post-op visit, 45% knew bone

fractured, 19% knew expected healing time, 45% knew weight bearing status.

• 2. Many have difficulty understanding and recalling complex

information, less satisfied with visit.

• In a 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.

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

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

What Words Are Clearer, More Culturally Appropriate?

• Low blood sugar
• Poultry
• Dairy product
• Carbohydrates
• Proteins
• Exercise
• High blood pressure
• Diabetes
• Obesity
• Fat (low fat, no fat,

fat free)

• Sodium
• Cholesterol

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)

Pictures Can be Good Teaching Tools

Patients may not understand or use measurements

Healthy Carbs Fruits and Veggies Proteins

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

Also consider What Its Like Being A Client In Your Setting?

• Are signs easy to follow?
• Are check-in personnel

calm, friendly?

• Are forms easy to read

and answer? (Spanish?)

• Is environment

welcoming?

Telephone Help: What We Need to Consider

• Who answers phone – person
• r computer?
• Are computer options simple,

short?

• How long is person on hold?
• Is voice tone friendly,

conversational?

• Is system pilot tested with

target audience?

Hidden Problems with Health Information

• Organized using medical model not patient-centered
• Scientific/bureaucratic not personal/conversational
• Often too long, too much information
• Illustrations complex, confusing or “don’t look like me”
• Lack of attention to ‘tone,’ patient emotions & culture
• Lack of patient and provider input and evaluation
• Distribution and sustainability not thought out

– How and when will patients get the information? Who gives it to them? When is teachable moment? Plan to update?

• Lack of awareness of what’s on Google/blogs

Nuts and Bolts of Easy to Read Materials

• Familiar words (ideally < 3 syllables)
• Short sentences (8-10 words)
• Short paragraphs (3-4 lines, 1 idea)
• Avoid ALL CAPS and cutesy font
• Use simple headers, bolding, boxes

(lump and clump info)

• Use lots of white space
• Use fonts > 12 point

– Arial, Times New Roman

User Friendly Does Not Mean “Dumbed Down”

• Adults with high education and

income still prefer brief, to-the- point materials.

• Most patients looking for “what I

need to know and do”.

• Patients who want more detailed

information appreciate links to websites.

• Web sites need to be user-friendly,

easy to navigate and understand.

Templates Provide Useful Framework

• Uniform look, consistent

message

• Makes development easier
• Easily reproducible
• Standard structure helps

patients navigate the material

Cincinnati Children’s Materials Focused on Behavior

Cincinnati Children’s Hospital Medical Center, 2012

1 page handout “voice of the child” What I can do & parent can do to help me

Guides focused on:

• Patient not disease
• ‘Need to know and do’

Help patients change health behavior:

• Increase knowledge and confidence managing disease
• Help patients solve self-care problems

American College of Physician’s Patient Self-Management Guides:

A good model to engage people in their health

57

Focus Is On Doing

• ‘You Can Do It’

checklist at end of each chapter

• Concrete examples
• f successful action

plans

• Emphasis on small

steps and patient choice

When Evaluating Materials: Ask 7 Questions

• 1. Is title patient centered?
• 2. Is layout user-friendly?
• 3. Do illustrations tell the story?
• 4. Is key message clear, easy to

pick out?

• 5. What is behavioral objective?
• 6. Is information manageable?
• 7. Is it culturally appropriate?

Is This Pamphlet Patient Centered?

Evidence Based Strategies & Considerations in Helping Patients Change Behavior & Improve Health

Why Focus on Diabetes Self-Management?

Diabetes is Prevalent and Increasing

• >11% adults have diabetes; 27% adults > 65 years,
• African Americans and Hispanics almost 2X more likely to

have diabetes ( 19% vs. 10% for whites )

• 35% adults > 20 yrs have pre-diabetes, 50% adults > 65yrs

www.cdc.gov/diabetes/pubs/pdf/ndfs_2011.pdf • www.minorityhealth.hhs.gov , NIDDK 201

What About Obesity?

• Over 36% U.S. adults are obese. ( 34% ,whites ; 39%, Hispanic

50% African Americans). 18% of children are obese.

• Louisiana ranks 50th in obesity and rates are increasing.
• No state has an obesity rate <15% (the national goal)
• Obesity contributes to major causes of death in the US

www.americashealthrankings.org/OR, CDC 2012

1st Beware of Faulty Assumptions About Patient’s Need to Change Behavior

• The patient

– ought to change – wants to change – knows how to change

• If patient does not change – visit has failed
• Patients are either motivated to change or not
• Now is the right time to change
• I’m the expert – patient must follow my advice

Consider the Spirit of Motivational Interviewing

• Behavior change is most effective if patient, not doctor,

chooses area to work on

• Motivation to change should be elicited from patient,

not imposed by provider

• Relationship functions best as partnership, not

expert/recipient

• It is patient’s task – not provider’s – to articulate and

resolve resistance to change

• Rational arguments not effective in resolving resistance

Hecht, J Am Behav Med, 2005

Bunny or Duck?

What problem does the patient need to work on?

• 1. INTRODUCE Diabetes Guide (briefly review).
• 2. ASK: Is there anything you are willing to do this

week to improve your health? Then wait, don’t jump in.

• 3. COACH patients to set goals and create action

plan to change behavior.

• 4. ASSESS confidence .
• 5. TEACH BACK & then write plan down in guide
• 6. SET TIME to call patient to check progress

(maintain, modify, new AP) Provider serves as partner, not expert, in helping patient change behavior

Easy Framework to Help Patients Manage Their Diabetes, Lose Weight

Seligman H, Davis T, Am J Health Behav, 2007

Action Plans (Baby Steps) Engage Patients in Improving Health Behavior

• Provider coaches patient to narrow a long term goal

(patients choose) to a specific, easy-to-achieve, short term “baby step” behavior. –Long-term goal: lose weight –Patient decides: to walk –Baby step: I will walk around the block after dinner 3 times next week.

– Encourages “buy-in”. – Teaches problem-solving. – Increases confidence.

Davis, J Prim Care Comm Health, 2012; Seligman H, Davis T, Am J Health Behav, 2007, Lorig, Am Behav Fam Med, 2006

“Baby Step Coaching”

The Patient is in Charge

– Patients choose areas motivated to work on – Patients need a few minutes to come up with a plan. – At first confused by doctor asking what they want to work on. – Avoid telling them what they need to work on or giving unsolicited advice

Baby Step Action Plans are Easy-to-Achieve

– 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 behavior changes – Check confidence on a scale from 1-10. – If < 10 — rework

Help patient turn goal – lose 10 lbs – into Action Plan – I will walk 2 blocks with my family after work 3 times next week

• What

Walk

• How much

2 blocks

• When (time of day)

After work

• How often

3 times

Action Plans are Very Specific

Examples of Actual 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
• f a whole one for my afternoon

snack.”

• “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.”

Baby Steps: Lessons Learned

• Goal setting with a

provider was not a familiar strategy

• Patients 1st goals too
• general. “I want to lose

weight” – had to learn “baby step” plan

• Many physicians expect

too big a step or too many steps

Patients Recalled Action Plans Changed Behavior And Problem Solved

2 Week Calls

• Recall AP
• Behavior sustained
• Other behavior

96% 75% 56% 17 Week Visits

• Recall AP
• Behavior sustained
• Other behavior

88% 67% 45%

• 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.

225 patients, LSU, UNC, UC-SF Med Clinics (76% minority; DM 9yrs; BMI 36; A1C 8.6)

Significant Improvement In 6 Months

Self report

↑ knowledge ↑ self-efficacy ↓ diabetes distress ↑ taking ownership of health ↑ self-reported diabetes management

*p<0.01

Wallace, Seligman, Davis, Schillinger, Arnold, DeWalt, et al. In press

Chart documentation

↓ HbA1c ( 7.7. p <.001) ↓ SBP (133, p=.02)

9 FQHCs in Missouri, 666 patients, 30% African American, 33% low literacy,A1c 8.5, SBP 140

Bottom Lines: Helping People Change Health Behavior

• Changing behavior is a process
• Information alone is not enough
• Patients & providers need practical frameworks
• “Baby Step” approach is effective, invites

engagement, problem solving, empowerment

• Ongoing support “touch points” are essential
• Telephone outreach, particularly with groups,

improves outcomes & satisfaction

Do Your Consent Forms Work?

• What problems have you encountered?
• Can patients read and understand them?
• Is the content meaningful to patients?
• Do they help patients make a decision about

whether or not to be in the study?

• Are they written in plain language?
• Are they formatted for reading ease?
• Do they have a manageable amount of

information?

AHRQ, 2008

The challenge in writing consent forms: considering both IRB and Patients

• Identify IRB requirements – what are they looking for?
• What templates /standard wording is required?
• What information do patients need & want?
• Consider how their literacy, motivation, attention, and

distractions may affect their comprehension.

• What is your key message?
• What is your behavioral objective?

CDC Clear Communication Checklist

Starting Steps: Developing Consent Documents

• 1. Develop content from patient perspective
• Plain Language, key messages easy

to pick up, personal “tone”

• 2. Attend to format and layout for

reading ease

• 3. Evaluate content, design, readability
• 4. Get patient and provide input
• 5. Continue to tweak

Example of Buried vs. Clear Messages

The goal of the tissue bank or repository is to support the LSUHSC-S Dept. of Surgery research in

• rder to improve our understanding of those

molecular factors that contribute to cancer and that may lead to prevention, early detection, and cure. The goal of this research is to learn what makes cells turn into cancer. vs.

Is Tone Bureaucratic or Patient-Centered?

Does the document

• Focus on study or consider

the patient

• Is it conversational,

respectful?

• Address the reader – use

personal pronouns

Does the document

• Get to the point
• Avoid information
• verload
• Focus on “need to know

& do” vs. “nice to know”

Is The Information Manageable?

Good Example Bad Example

Paragraphs: Limit length. One idea per paragraph.

Too much (14 lines):

Researchers at x hope to learn if adding a targeted therapy, trastuzumab (Herceptin), to standard treatment with chemotherapy for early stage, HER2-low breast cancer from returning. Tastuzumab is called a targeted therapy because it targets the tumor cells by blocking the HER2 protein on the surface of the cancer cell to slow down or stop cancer growth. Trastuzumab is a standard treatment For HER2-positive breast cancer. In this study, trastuzumab is considered to be investigational because it has not been studied for use in treating HER2-low breast cancer. Studies that already have been done with trastuzumab focused on breast cancers that were strongly HER2-positive. However, in some of these studies, tumor samples were checked in a central laboratory to confirm the HER2 testing results. Some breast cancers that were thought to be HER2 –positive were actually HER2 –

• low. The researchers then looked at the results of treatment in patients with HER2-low tumors. They

found that trastuzumab seemed to have benefit in keeping the cancer from returning even when the HER2 levels were in the normalrange. The B-47 study is being done to learn more about trastuzumab

• r treat HER2-low breast cancer.

Appropriate (3 lines): Another goal of this study is to find out how the drugs used in this study affect menstrual cycles (monthly periods) and if these changes in menstrual cycles have any effect on breast

• cancer. You will be asked to allow blood samples to be collected as part of the study.

vs.

Example of Overload vs. To-The-Point

The purpose of the study is to find out more about how the body controls BK virus. The purpose of this study is to try to understand if production of BK virus, JC virus, Merkel Cell Polyomavirus and Cytomegalovirus vary with hormonal changes during the female menstrual cycle. The study will also test your immune response to BK virus, JC virus, Merkel Cell Polyomavirus and Cytomegalovirus, if present, and measure hormone levels in urine for correlation with your menstrual cycle.

vs. Overload To-the-point

Attend to Format and Layout

Which are you more likely to read?

Plain Language = Useable Language

Unnecessary and complicated language You have been selected as a possible participant in this study because you have a moderate to very-high risk pulmonary embolism, and it is not known if retrievable vena cava filters reduce mortality or reduce recurrence of nonfatal pulmonary embolism or if complications of vena cava filters outweigh the benefits in such patients. Plain Language You are invited to be in the study because you have had a pulmonary embolism (clot that goes from your legs to your lungs).

vs.

Plain Language = Understandable Language

Unnecessary and complicated language In order to draw statistical conclusions about the study, data from your medical records may be shared among researchers and research staff involved in the study, both here at our hospital and with other members of the collaborative group. Plain Language In order to get statistical results about the study, data from your medical records may be shared among the research staff.

vs.

Developing User-Friendly Forms

• It’s not rocket science,

but harder and more tedious than it seems.

• User friendly does not

mean ‘dumbed down.’

• Patients with high

education and income still prefer brief, simple, easy to read materials.

Improving Informed Consent Process

• Give patient time to go over the form

BEFORE you talk about it

• Talk about the form in a private place

(let patient include who they wish)

• Offer to read document with patient
• Slow down
• Use plain language – avoid jargon
• Verify and document comprehension

AHRQ, 2008

Practice Recommendations

• Use plain language, consider culture
• Focus on patients’ ‘need to know and do’
• vs. ‘nice to know’
• Encourage ‘buy in’/collaboration
• Use teaching tools (pictures, pamphlets)
• Write precise Rx instructions state purpose
• Use patient materials that are

understandable and culturally appropriate

• ‘Teach back’ to confirm understanding
• Be positive, motivating, encouraging

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

What’s Our Bridge to Action?

• How does this talk stimulate your

thinking?

• What strategies could Xavier

develop and test to make health information/ services more user- friendly?

• How can health literacy research

help reduce health disparities?

• What research ideas &

collaborations does it spark?

Useful HL Resources

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

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/

• Informed Consent (2009)

www.ahrq.gov/fund/informedconsent

• Health Literacy Universal Precautions (2010)

(clinic based system) www.ahrq.gov/qual/literacy/

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

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/ 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
• 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/

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.

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

List 1 List 2 List 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

• ccupation

sexually alcoholism irritation constipation gonorrhea inflammatory diabetes hepatitis antibiotics diagnosis potassium anemia

• besity
• steoporosis

impetigo

REALM

0-18 correct = < 3rd grade 19-44 correct = 4th-6th grade 45-60 correct = 7th-8th grade 61-66 correct = high school

Davis, Fam Med, 1993

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

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

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

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

105

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, 2nd 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

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

#XUDisparitiesCollabs

Questions & Answers

#XUDisparitiesCollabs

Closing Remarks