Improving Patient‟s Literacy:

Patient Education and

Information

Ova Emilia
ovaemilia@yahoo.com.au
 What‟s The Problem?

Patients‟ Education, Literacy, Language

Unnecessarily Complex Health Information
“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 Dr. Richard Carmona,
do not understand the U.S. Surgeon General
health information we
Mentioned health literacy in
are trying to 200 of last 260 speeches

communicate.”
 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.
 Low Literate Diabetic Patients Less
Likely to Know Correct Management*

Need to Know: Low

symptoms of low blood Moderate
sugar High

Need to Do:
correct action for Low
symptoms of low blood Moderate
sugar High

0 20 40 60 80 100

Percent

*Williams et al., Archive of Internal Medicine, 1998

 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.
 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
“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

80 71
Correct (%)
60
John Smith Dr. Red Understanding
40 35
Take two tablets by Demonstration
mouth twice daily.
20
Humibid LA 600MG
1 refill
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
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

 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

 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
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 life-
changing.”

“People with diabetes say they

sometimes feel overwhelmed.
Some people feel alone. You are
not alone. Millions of people
have diabetes.”
 What is an Action Plan?
• Very specific, easy-to-achieve, short-term
activity a patient chooses to do to reach a long-
term goal
– Long-term goal: lose
weight
– Action plan: I will walk
around the block before I
sit down to watch TV after
dinner 3 times during the
next 7 days.

* Lorig, J Am B Fam Med, 2006.

Action Plans Can Be Powerful
• Created by the patient
(Physician only acts as
facilitator).

Magic of a “Baby Step”

• It doesn‟t matter what
the step is
• Personally relevant and
immediate
• Engages patient in self-
care
• Increases self-efficacy
• Teaches problem-solving
 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
 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
 Lessons Learned From Patients
18 focus groups
• 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
 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
 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
 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.
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 96%
-Behavior sustained 75%
-Other behavior 56% • Most patients
4 Week Calls (89%) chose diet
- Recall AP 94% and exercise
-Behavior sustained 69%
-Other behavior 34% • Equally effective
with low and high
Final Visits literacy patients
- Recall AP 88%
-Behavior sustained 67%
-Other behavior 45%

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

DeWalt, Davis, Schillinger, Seligman, Arnold, et al. In press.
 Patient Response To Guide

Likely to keep using 98%

Likely to bring to visits 70%
Recommended Guide 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 self-
management 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