Health Literacy Research
The Next Generation
Health Literacy Core
New Orleans
February 20, 2014
Terry Davis, PhD
Professor 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 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.
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?
Hidden Problems with
Health Information
“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
Health Literacy 1st Viewed as Patient Deficit
Emphasis Shifts to Health System
Skills/ability
of patients
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
* US DHHS, May 27, 2010. (www.health.gov/communication/HLactionplan)
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
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
Low Literacy is a National Problem
(National Adult Literacy Survey)
% Adults with Level 1
Literacy Skills
> 30%
20% to 30%
15% to 20%
• 21% U.S. Adults are Level 1
< 15%
• 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 Parish
% Adults with Level 1
Literacy Skills
>30%
20%-30%
15% to 20%
< 15%
28% Louisiana Adults are Level 1
39% New Orleans Adults are Level 1
National Institute for Literacy 1998
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.
High school dropout rate: US 23%, LA 29%
47% graduates go on to a 4 year college
43% need remedial classes
Only 3 of 5 TOPS students graduate college in 6 years
1st 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%)
Below
Basic
14%
(22%)
Intermediate
53%
(33%)
Average
Basic
Below basic
22%
(33%)
Hispanic: 41%
HS grad
National Assessment of Adult Literacy (NAAL):
National Center for Educational Statistics, U.S. Dept. of Education, 2003.
Native American: 25%
Adults > 65: 29%
Medicaid
Health Literacy Tasks
152 tasks (28 health related)
Below Basic:
Basic Circle date on doctor’s appt. slip
• Below
Basic Give 2 reasons a person with no
• Basic:
symptoms should get tested for cancer based
on a clearly written pamphlet
Intermediate Determine what time to take Rx
• Intermediate:
medicine based on label
Proficient Calculate employee share of health
• Proficient:
insurance costs using table
67% probability individual can perform task
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
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?”
395 medicine clinic patients in 3 states
48% <9th grade reading, averaged 1.4 meds
• 46% did not understand instructions ≥ 1 labels
• 38% with adequate literacy missed at least 1 label
• <10% attended to warning labels
Davis, Wolf, Bass, Parker. Ann Intern Med, 2006.
“Show Me How Many Pills You Would
Take in 1 Day”
Rates of Correct Understanding vs. Demonstration
“Take Two Tablets by Mouth Twice Daily”
100
Correct (%)
80
71
80
63
60
40
89
84
Understanding
Demonstration
35
John Smith
20
Dr. Red
Take two tablets by
mouth twice daily.
0
Low
Marginal
Adequate
Patient Literacy Level
Humibid LA
1 refill
600MG
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
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
Hindsight: I should have asked my insurance
company and LSU bureaucracy these questions
33
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 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
Fruits and Veggies
Proteins
Healthy Carbs
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.
Cautions About Assessing
Health Literacy Clinically
• 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.
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?
A Perfect Storm is Approaching
Intersection of declining literacy, increasing
immigrant, minority & elderly populations, and
the increasing demands of health care & society
Are We Prepared?
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 userfriendly?
• 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
• Living With Diabetes
• Caring For Your Heart
• Living With COPD
• 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
List 1
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
List 2
List 3
fat
fatigue
allergic
flu
pelvic
menstrual
pill
jaundice
testicle
dose
infection
colitis
eye
exercise
emergency
stress
behavior
medication
smear
prescription
occupation
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
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
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/physiciansproviders/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
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 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