Health Literacy Is Fundamental
To Diabetes Education &
Counseling
Terry Davis, PhD
Professor of Medicine &
Pediatrics
LSUHSC-S
Collaborative Diabetes
Education Conference
January 30, 2009
What’s The Problem?
Patients’ Education, Literacy, Language
Unnecessarily Complex Health Information
California drop out rate 30%
Problems Are Not Going Away
Low Literacy Rates By County
% Adults with Level
1 Literacy Skills
> 30%
20% to 30%
15% to 20%
10% to 15%
< 10%
No Estimate
Available
01
24% California Adults are Level 1
National Institute for Literacy 1998
“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*
Need to Know:
symptoms of low blood
sugar
Low
Moderate
High
Need to Do:
correct action for
symptoms of low blood
sugar
Low
Moderate
High
0
20
40
60
Percent
*Williams et al., Archive of Internal Medicine, 1998
80
100
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.
1st Health Literacy Assessment
12%
n=19,000 U.S. Adults
Proficien
t
53%
Intermediate
Below
Basic
13%
Hispanic
Basic
22%
Average
Medicare
National Assessment of Adult Literacy (NAAL): National Center for Educational Statistics, U.S.
Department of Education, 2003.
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
Changing Times: Healthcare is
Increasingly Complex
Today’s patients need higher literacy
40 years ago
Today
1 doctor
Multiple providers
1 pharmacist
Chain drug stores
No forms
Numerous forms
In-patient
Out-patient
650 medications
24,000 meds
Video
It’s easy to make a mistake.
“How would you take this medicine?”
395 primary care patients in 3 states
• 46% did not understand instructions ≥ 1 labels
• 38% with adequate literacy missed at least 1 label
(Ann Intern Med. 19 Dec, 2006, Davis, Wolf, Bass, Parker)
“Show Me How Many Pills You
Would Take in 1 Day”
100
John Smith
Dr. Red
Take two tablets by
mouth twice daily.
Correct (%)
80
71
60
40
35
Demonstration
20
Humibid LA
1 refill
Understanding
600MG
0
Patients With Low
Literacy
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 <8th 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 selfmanagement 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
• 7th 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
culturallyappropriate 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
* Seligman, et al. Am J Health Behav 2007; 31 (Suppl 1): S69-S78
18 focus groups
Lessons Learned: Physicians
9 focus groups
Want to inform patients on:
• severity of diabetes
• associated health risks
• meaning of A1c tests
• importance of checking
blood sugar regularly
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
5 focus groups
• Care is often not
coordinated between
DM educators &
physician
• Insurance may not pay
for diabetes education
• Patient materials often
not concise
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
Standard Guide
Our 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 lifechanging.”
“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
(12th 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
(5th 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 12-16
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 longterm 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 selfcare
• 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
n=250
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%
Wallace, Seligman, Davis, Schillinger, Arnold, DeWalt, et al. In press
DeWalt, Davis, Schillinger, Seligman, Arnold, et al. In press.
• Most patients
(89%) chose diet
and exercise
• Equally effective
with low and high
literacy patients
Patient Response To Guide
Likely to keep using
Likely to bring to visits
Recommended Guide
98%
70%
97%
• “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 selfmanagement goal(s) – QI
performance measure
• Goal setting with a provider
was not a familiar strategy
• Patients 1st 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
How To Do The “3 Step”
Using Guide With Patients
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
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.”)
Key Point # 2:
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 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 # 3:
Action Plans are Very Specific
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
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, 2006.
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:
877-208-4189
(ask for Stacey Dailey)
Box of 40 = $66
Video free of charge
foundation@acponline.org
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