Health Literacy ResearchThe Next Generation

Health Literacy CoreNew Orleans

February 20, 2014

Terry Davis, PhDProfessor of Medicine and

Pediatrics

Connie Arnold PhD Associate Professor of Medicine

LSUHSC-S

DISCLOSURE STATEMENT

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

Stocks:– Johnson & Johnson– Abbott Laboratories

Why Focus on Health Literacy?

• Health literacy is a focus of national interest • Poor health literacy is a hidden problem in health

research • The majority of U.S. adults struggle with health

information and tasks• Literacy levels in U.S. are getting worse• The demands and expectations of the healthcare

system are increasing

LA ranks 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

Health Literacy and LA CaTS

The ability to obtain, process, understand, and use health information and services to make appropriate health decisionsLow 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.

Questions for Today

• Is there an imbalance in your patients’ knowledge and skills and the increasing demands needed to manage their health?

• How can we make health information and services easier to understand and use?

• What are promising strategies to improve healthcare communication, patient education and consent materials.

• What are “lessons learned” for your setting?

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

“Public health emphasis is on getting information ‘out’ to people, not if it has been understood & used.” Dr. Richard Carmona,

Former U.S. Surgeon General

Hidden Problems withHealth Information

* US DHHS, May 27, 2010. (www.health.gov/communication/HLactionplan)

IOM Report (2004)• 90 million adults have trouble understanding and acting

on health informationHealthy People 2010….and 2020

• Improve health communication (plain language materials)Joint commission (2007)

• Patients must be given information they understand

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 :

• Develop and disseminate health information that is accurate, accessible, and actionable.

• Promote changes in healthcare delivery system

• Expand culturally & linguistically appropriate health information services in the community

• Build partnerships, develop guidance, change policies

• Increase research, and evaluation of interventions

* US DHHS, May 27, 2010. (www.health.gov/communication/HLactionplan)

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

Judgment/ Interpretation

Problem Solving

Math Skills

Communicate

Low Literacy is a National Problem(National Adult Literacy Survey)

02 0

> 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 139% 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 college43% need remedial classes

Only 3 of 5 TOPS students graduate college in 6 years

High school dropout rate: US 23%, LA 29%

1st National Assessment of Health LiteracyAssessed 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 on a clearly written pamphlet

• Intermediate: Determine what time to take Rx medicine based on label

• Proficient: Calculate employee share of health insurance costs using table

67% probability individual can perform task

152 tasks (28 health related)

Intermediate

Proficient

Below Basic

Basic

Calculation: A Hidden ProblemUnderstanding Food Labels

You drink this whole bottle of soda. How many grams of total carbohydrates does it contain?

67.5 grams 32% answered correctly 200 primary care patients

– 73% private insurance– 67% at least some college– 78% read > 9th grade– 37% math > 9th grade

Rothman R, Am J Prev Med, 2006

Video

It’s Hard to Be a Patient

20

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

Video

It’s Easy to Make a Mistake

23

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 states48% <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 600MG1 refill

0

20

40

60

80

100

Low Marginal Adequate

Cor

rect

(%)

Patient Literacy Level

Understanding

Demonstration

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

71

35

84

63

8980

Patient Centered Label Can Improve Understanding and Adherence

State Board of Pharmacy in CA passed legislation for this label

Standard Label

PC Label

Understanding 59% 74%

Adherence (3 months) 30% 49%

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

What I Learned on my 2007 Summer Vacation

A Health Literacy Expert Has A Taste Of Her Own Medicine

When diagnosed, I had to ask cardiologist to write down “What’s my problem? What do you think I need to do?”

Cardiologist’s Note

33

Hindsight: I should have asked my insurance company and LSU bureaucracy these questions

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

How Do I Space Out Pain Meds?

Which Tylenol?I did not see active ingredient or realize its importance

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

“Crazy Cousin Nancy”The Internet Info Queen

• My cousin is a bright woman who lives on the internet; alternative medicine is her thing; she’s retired, lives alone

• She is concerned about me and my prescription meds

• She sends me at least 2 e-mails weekly about supplements, alternative cures for A-fib, mitral valve problems, high cholesterol, problems with Fosamax, acid in my urine, stress (soda in water daily), stop working so damn much – meditate more.

Strategies to Improve Health Communication, Patient Education & Consent

Step 1 – 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.

2. Many have difficulty understanding and recalling complex information, less satisfied with visit.

• In study of 250 orthopedic patients at 1st post-op visit, 45% knew bone fractured, 19% knew expected healing time, 45% knew weight bearing status.

• In study of 100 surgery patients, 95% of surgeons believed patients understood when to resume normal activities vs. only 58% of patients.

3. Those with low literacy are less likely to actively participate in healthcare dialogue and decision making.

Roter, D. 2011 Nursing Outlook; Korsch, B. Pediatrics 1968; Castro C 2007 Am J Health Behav; Kadakia, J Ortho Trauma, 2013; Calkins Arch Intern Med, 1997.

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

Strategy for Limiting InformationLessons 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 ToolsPatients 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

What About Research?Literacy is an easy, yet informative variable to add

Years of schooling is NOT a good measure of literacy level (reading comprehension often 2-5 grade levels < education level).

Several tests measure literacy in healthcare research. Some have math sections.

All existing tests measure literacy in health context (i.e. not health literacy).

These formal assessments provide a proxy measure of health literacy and can be used to compare results in the literature.

Patient’s score on literacy test is an indication they may struggle to understand and act on oral or written health information.

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 outcomes when testing is done strictly for clinical use.

• To get the most accurate measure of patient’s specific health literacy clinically use “teach back.”

• “Universal precautions” (plain language) are recommended to make materials user-friendly.

Cautions About Assessing Health Literacy Clinically

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?

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

• 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 DischargeProject 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 siteswww.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

occupation

sexually

alcoholism

irritation

constipation

gonorrhea

inflammatory

diabetes

hepatitis

antibiotics

diagnosis

potassium

anemia

obesity

osteoporosis

impetigo

REALM0-18 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 - TOFHLAPASSAGE AYour 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. toesb. broth b. throatc. attack c. toastd. nausea d. thigh

Scoring:

0-16:Inadequate func. HL

17-22Marginal func. HL

23-36Adequate func. HL

Parker, J Gen Intern Med, 1995

NVS

Test has 6 QuestionsFor 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.aspUnited Health Foundation• www.americashealthrankings.org/rankings Annie E. Casey Foundation• http://datacenter.kidscount.org/ CDC• www.cdc.gov/healthliteracy/statedata/index.html

64

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 Literacywww.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, PhDDepartment of Medicine and Pediatrics

LSU Health ShreveportTDavis1@lsuhsc.edu

(318)675-8694

Connie Arnold, PhDDepartment of Medicine and Pediatrics

LSU Health Shreveportcarnol@lsuhsc.edu

(318)675-4324