HEALTH LITERACY:Costs, Consequences,
and Clinical Implications
Peggy Sissel-Phelan, Ed.D.
Community Health Centers of Arkansas Annual ConferenceJune 14 – 15, 2010
Defining LiteracyAn individual’s ability to read, write, and speak English, and compute and solve problems at levels of proficiency necessary to function on the job and in society, to achieve one’s goals, and develop one’s knowledge and potential.
Workforce Investment Act (1998)
The ability to use printed and written information to function in society, to achieve one’s goals, and to develop one’s knowledge and potential.
National Assessment of Adult Literacy (2003)
Historic Perspectives Multiple meanings Changing measures
20th Century Changes 1900 – 1950’s . . . . . . . . Industrialization 1960’s . . . . . . . . . . . . . . Space race 1970’s . . . . . . . . . . . . . . International development 1980’s . . . . . . . . . . . . . . Technological advancement 1990’s . . . . . . . . . . . . . . Globalization
Literacy Needs in Context
Assessing Literacy 2003
National Assessment of Adult Literacy
(NAAL)
19,000 adults ages 16+
107 incarcerated
1992 National Adult
Literacy Survey (NALS)
16,000 adults ages 16+
1,000 incarcerated
Methodology NAAL
Tested literacy tasks Prose, Document, and
Quantitative 5 reading skill levels
Below Basic Basic Intermediate Proficient Not literate in English
Health Literacy Component
NALSTested literacy tasks Prose, Document, and
Quantitative 5 reading skill levels
Level 1 – approx. 1st grade Level 2 – approx. 4th grade Level 3 – approx. 8th grade Level 4 – approx 12th grade Level 5 - College
Results 2003 NAAL
14% Below Basic
29% Basic
43% at Basic or Belowplus
5% not literate in English
=97 million U.S. adults
1992 NALS 23% Level 1
28% Level 2
51% at Level 1 or 2
=90 million U.S. adults
State by State Extrapolation 1992 NALS results synthesized with 1990
census data
Late 90’s Findings Released State Congressional District County City
Arkansas
NALS and Communities
Note: Level 1 equates to about 1st grade reading skills
Estimated Adults at Level 2 Literacy Skills or Below
Number of Counties
n = 3
n = 8
n = 19
n = 29
n = 12
n = 3
43-45% 46-51% 52-59% 60-69% 70-79% 80-89%
Note: Level 2 equates to about 4th grade reading skills
Percentage of Adults in Arkansas Towns at Level 2 or Below 30-39%
40-49%
50-59%
60-69%
70-79%
FayettevilleSherwood
Arkadelphia Bentonville Conway Fort SmithJacksonville Jonesboro
Benton MagnoliaN. Little RockParagouldVan Buren
BlythevilleCamdenEl DoradoHot Springs
Forrest CityPine Bluff
Little Rock Rogers RussellvilleSearcySpringdale
StuttgartTexarkanaW. Memphis
Literacy Across Generations: Arkansas
Percent100
908070605040302010
0
Children
Parents/Adults
Children whose parents have low literacy skills are more likely to become adults with low literacy skills than children whose parents are good readers.
Thomas Sticht, 2002
Below or Below Basic Literacy Skills
Basic or Below BasicParents/Adults 8th Graders City
32% 34% Fayetteville44% 37% Bentonville 48% 40% Springdale 42% 46% Conway44% 50% Jonesboro42% 57% Rogers 46 % 55% Searcy50 % 58% Benton49 % 61% Arkadelphia
Note: Parents data derived from National Adult Literacy Survey, 1992Students data derived from National Assessment of Educational Progress, 2002
Literacy Across Generations: Arkansas
Basic or Below Basic Parents/Adults 8th Graders City
46 % 70% Little Rock59% 58% Magnolia58% 68% Paragould54% 77% North Little Rock63% 69% El Dorado 64% 70% Blytheville62% 83% Texarkana71% 92% Pine Bluff78% 90% Forrest City
Literacy Across Generations: Arkansas
Almost half of U.S. adults lack the basic skills needed to function successfully in society.
These Adults Can Not: Find which foods contain a specific vitamin Identify a specific location on a map Use fractions Interpret a growth chart or table
Functional illiteracy impedes health and economic well-being.
Practical Implications
Perspectives ofHealth Literacy
Levels of Literacy Skills & Health?
Levels of Understanding & Health?
Chronic
Acute
Systemic
Preventative
Perspectives ofHealth Literacy
Levels of Literacy Skills & Health?Chronic – persistent in daily livingSystemic – resistance and culture of medical
settings
Levels of Understanding & Health? Acute – situationalPreventative - cultural
Defining Health Literacy
The ability to read and comprehend prescription bottles,
appointment slips, and the other essential health-related
materials required to successfully function as a patient.
(AMA Council of Scientific Affairs, 2000)
The degree to which individuals have the capacity to
obtain, process, and understand basic health
information and services needed to make appropriate health decisions.
(Ratzan and Parker, 2000)
ROLELEVELACTIONEXPECTATION
Defining Health LiteracyThe ability to read, understand, and act on health care
information. (Healthy People 2010, US Department of Health and Human Services,
Office of Disease Prevention and Health Promotion, 2000, )
The ability to use printed and written information associated
with a broad range of health-related tasks to accomplish one’s
goals at home, in the workplace, and in the community (including
health care settings). (NAAL, 2003)
ROLE LEVELACTIONEXPECTATION
Defining Health Literacy
Health literacy allows the public and personnel working in all health-related contexts to find, understand, evaluate, communicate, and use information. Health literacy is the
use of a wide range of skills that improve the ability of
people to act on information in order to live healthier lives.
These skills include reading, writing, listening, speaking, numeracy, and critical analysis, as well as communication and interaction skills.
(Calgary Charter on Health Literacy, 2008)
ROLE ROLELEVELACTIONEXPECTATION
Defining Health Literacy
Health literacy allows the public and personnel working in all health-related contexts to find, understand, evaluate, communicate, and use information. Health literacy is the use of a
wide range of skills that improve the ability of people to act on
information in order to live healthier lives. These skills include
reading, writing, listening, speaking, numeracy, and critical analysis, as well as communication and interaction skills.
(Calgary Charter on Health Literacy, 2008)
* The interconnected expectation of improving ability to act as a result of being health literate does not address key resource and access issues (distance, price, cultural norms, living conditions, personal constraints)
ROLE ROLELEVELACTIONEXPECTATION
Defining Health Literacy
Health literacy allows the public and personnel working in all health-related contexts to find, understand, evaluate, communicate, and use information. Health literacy is the use of a
wide range of skills that improve the ability of people to act on
information in order to live healthier lives. These skills include
reading, writing, listening, speaking, numeracy, and critical analysis, as well as communication and interaction skills.
(Calgary Charter on Health Literacy, 2008)
* Not simply being acted upon as the subject of care, but empowering individuals to address their own, and others’ health as a “partner” with health care providers and systems.
ROLE ROLELEVELACTIONEXPECTATION
Changes in Care 35 yrs. ago Today
Treatment of Acute 4 - 6 weeks bed 2-4 days Myocardial Infarction rest in hospital in hospital
# Prescription Drugs 650 10,000 +
on the market Treatment of new 3 weeks
+/- outpatient onset Diabetes in hospital classes 0-3 hrs.
2 hours a day of diabetic classes
Health Literacy Needs in Context
Source: Balydon, Glusman, and Sharkey-Asner, 2009For Reach Out and Read Illinois
NAAL Health Literacy Component Health literacy and relationship to
prose, document, and quantitative skill.
Address deficiencies in health literacy skills○ Policies○ Programs○ Development of appropriate health
information
Health Literacy Component
NAALData on target audiences Relationship between health
literacy and ○ educational attainment○ age○ race/ethnicity ○ where adults get information about
health issues, and ○ health insurance coverage
Health Literacy Component
Health Literacy Component Question types
ClinicalNavigationPreventive
Assessment MethodsPerform a task (circle word)Decode words (read instructions)Locate words or section (review and respond)Interpret (infer applicability)
Elements of Health Literacy Accessing health care system Levels of existing health information Locating information Understanding rights/responsibilities Decoding information Making inferences about care needs Carrying out directives Formulating questions Interpreting Oral information
NAAL Results
Reports poor health 1 or more disabilities No health insurance or Medicaid Fewer preventive health
measures Lower Educational Achievement Gets no health information from
the Internet
Low Health Literacy: Social Characteristics
NAAL Results
Poverty Racial and ethnic minorities English as a Second Language Single Parent Families Older adults Prison inmates
Low Health Literacy: Social Characteristics
Consequences of Low Literacy Access Misunderstanding Diagnosis Unable to Read Patient Education
Materials Understanding and Following Health
Related Instructions, compliance issues
Low Literacy Affects Access
Locating, obtaining, navigatingie: 84% of Medicaid patients do not
understand rules and regulations of the application form
Adhering to and accepting careWhile still in the clinic 26% did not
understand when return appointment was scheduled
Cultural and beliefs stress no need for care
Feelings of rejection, abuse, by health care staff
Consequences of Low Literacy Medication Errors Poor Outcomes 2 x more likely to be hospitalized Higher rates of medication and treatment
errors Link: Low literacy, poor health, and early death
Related factors: housing, diet, addiction, violence
Costs $38 -53 billion in unnecessary
costs annually (Center for Health Care Strategies, Inc, 2001)
$73 billion (Friedland, Georgetown University, 2003)
$106-$236 billion (Vernon, University of Connecticut, 2007)
Medical costs for adults with low literacy skills are four times the national average - $21,760.
You Can’t Always Tell
In the Below Basic Literacy Group
37% have a HS or some college education
52% speak only English 54% have no physical or mental
disabilities
Kutner M et al, Nat Center for Educ Statistics 2005
The StigmaPatients who have never told: %Supervisor 91%Spouse 68%Children 53%Anyone19%
Parikh N, et al., Patient Educ Couns, 1996.
How Does It Feel?The following passage simulates
what a reader with below basic general literacy sees on the printed page.
Read the entire passage out loud. You have 1 minute to read. Hint: The words are written
backwards and the first word is “cleaning”
How Does It Feel?GNINAELC – Ot erussa hgih ecnamrofrep,
yllacidoirep naelc eht epat sdaeh dna natspac revenehw uoy eciton na noitalumucca fo tsud dna nworb-red 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.
How Does It Feel? How do you clean the capstan?
Red Flags: What to Look for
Unable to name medications, or explain purpose or timing of administration
Difficulty explaining medical concerns Detour, letting doctor miss the concern Have no questions Incomplete registration forms Frequently missed appointments Skipped tests and referrals Non-compliant with meds
Red Flags: What to Look for
Seeking help only when illness is advanced
Walking out of the waiting room Becoming angry, demanding Clowning around, using humor Being quiet, passive Making excuses Pretending they can read
Or . . “I forgot my glasses. I’ll read
this when I get home.” “Let me bring this home so I can
discuss it with my husband.”
Strategies: Make Changes Lessen stigma: Approach all patients
the same way Be non-judgmental. There is no one correct way to ask There are natural times in the history
during which you can bring this up Never ask “do you have questions” Use, what kind of questions do you
have?
Strategies: Enhance Communication Attitude of helpfulness, caring and
respect by all staff Conduct patient-centered visits Explain things clearly in plain
language Focus on key messages and repeat Use a “teach back” or “show me”
technique to check for understanding Use patient-friendly educational materials to enhance interaction
Anti-inflammatory
Benign
Contraception
Hypertension
Oral
Echocardiogram
Stops SwellingNot CancerBirth ControlHigh BPBy MouthPicture of the heart
Strategies: Use Plain Language:
Examples
Plain Language: It’s not just medical terms!
We are disseminating information about….We are giving out information about…
How do you administer the medication?How do you give the medicine?
Have you ever purchased generic medications?Do you ever buy store brand medicine?
This product has an extensive list of symptoms that it treats…
This medicine can help with many things like fever, or pain, etc….
Strategies: Use Patients’ Social History How far did you go in school? Did you ever have any difficulty in school? Has reading ever been a problem for you? Other possible ways to ask:
Have you ever had difficulty reading materials the doctor gave you?
Has a doctor ever been unclear when they explained things to you?
D.I.R.E.C.T.D- Do you have any Difficulty readingI- Are you interested in ImprovingR- We have Referrals/resources
availableE- Ask EveryoneC- This is a Common problemT- Take down the barriers to obtaining
the resources and take down current barriers to providing effective care
Source: Balydon, Glusman, and Sharkey-Asner, 2009For Reach Out and Read Illinois
Strategies: Written materials
Simple words (1-2 syllables) Short sentences (4-6 words) Short paragraphs (2-3
sentences) No medical jargon Headings and bullets Lots of white space
Strategies: Teach Back Ask patient to demonstrate understanding
“What will you tell your spouse about your child’s condition?”
“I want to be sure I explained everything clearly, so can you please explain it back to me so I can be sure I did.”
Academic settings can use the resident or student/attending interaction to do this
Do not ask, “Do you understand?”
Strategies: Use Visuals Show or draw simple pictures Focus only on key points Emphasize what the patient
should do Minimize information about
anatomy and physiology Be sensitive to cultural
preferences Visual aids can include
handouts, pictures, models etc.
System Change Identify patients Identify the barriers faced by
both patients and clinicians Identify and implement
strategies to enhance health literacy
Advocate for system change
ResourcesPfizer Clear Health Communication
Initiative http://www.pfizerhealthliteracy.com
NYU Patient and Family Resource Center http://www.nyupatientlibrary.org/medcenter/build-skills
Center for Health Care Strategies Health Literacy Fact Sheets
http://www.chcs.org/publications3960/publications_show.htm?doc_id=291711
ResourcesInstitute for Healthcare Advancement
www.iha4health.orgMichael Villaire, MSLMDirector, Programs and [email protected](800) 434-4633 x202
American Medical AssociationHealth Literacy Program and Kitwww. ama-assn.org
ResourcesCommunicating Health Information. Editorial.
Critical Care Nurse. 2004;24: 8-13http://ccn.aacnjournals.org/cgi/content/full/24/4/8
Assessing the Nation’s Health Literacy:Key Concepts and Findings of the National Assessment of Adult Literacy (NAAL)
Sheida White, PhDNational Center for Education Statistics
A Publication of the American Medical Association Foundation “Help Your Patients Understand.” Video Available from AMA Foundation
http://www.ama-assn.org/ama/pub/category/8035.html