1. Health Literacy
What is it?
Why is it important?
How should it be measured?
What do patients think?
Elizabeth A. Hahn
Associate Professor
Department of Medical Social Sciences
Feinberg School of Medicine, Northwestern University
e-hahn@northwestern.edu
RIC Grand Rounds
November 9, 2011

2. Learning Objectives
1. Understand how health literacy is defined and measured
2. Identify the relationships between low health literacy and
poor health outcomes
3. Evaluate strategies to overcome literacy barriers
4. Develop strategies for using health literacy measures in
research and clinical practice

3. Definition of Health Literacy
Health literacy is “the degree to which individuals can obtain,
process, and understand the basic health information and
services they need to make appropriate health decisions.”
It represents a constellation of skills necessary for people to
function effectively in the health care environment and act
appropriately on health care information. These skills
include the ability to interpret documents, read and write
prose (print literacy), use quantitative information
(numeracy), and speak and listen effectively (oral literacy).
Berkman et al. Health Literacy Interventions and Outcomes: An Updated
Systematic Review. AHRQ Publication Number 11-E006. March 2011.

4. Why is it important?
 Results. Differences in health literacy were associated with increased
hospitalizations, greater emergency care use, lower use of mammography, lower
receipt of influenza vaccine, poorer ability to demonstrate taking medications
appropriately, poorer ability to interpret labels and health messages, and, among
seniors, poorer overall health status and higher mortality. Health literacy level
potentially mediates disparities between blacks and whites.
 Conclusions. Future research priorities include justifying appropriate cutoffs for
health literacy levels; developing tools that measure additional related skills
(e.g., oral (spoken) health literacy); and examining mediators and moderators of
the effect of health literacy. Priorities in advancing the design features of
interventions include testing novel approaches to increase motivation, techniques
for delivering information orally or numerically, “work around” interventions such
as patient advocates; determining the effective components of already-tested
interventions; determining the cost-effectiveness of programs; and determining
the effect of policy and practice interventions
Berkman et al. Health Literacy Interventions and Outcomes: An Updated
Systematic Review. AHRQ Publication Number 11-E006. March 2011.

5. Measures of Health Literacy
1. Word recognition
2. Reading comprehension
3. Numeracy

6. Word Recognition:
Rapid Estimate of Adult Literacy in
Medicine (REALM) (Davis et al., 1993)
1 2 3
fat fatigue allergic
flu pelvic menstrual
pill jaundice testicle
dose infection colitis
… … …
bowel syphilis anemia
asthma hemorrhoids obesity
rectal nausea osteoporosis
incest directed impetigo

7. Reading Comprehension:
Test of Functional Health Literacy
in Adults (TOFHLA) (Parker et al., 1995)
Your doctor has sent you to have a _______________ x-ray.
a. stomach
b. diabetes
c. stitches
d. germs

8. Numeracy:
Test of Functional Health Literacy
in Adults (TOFHLA) (Parker et al., 1995)
GARFIELD IM 16 Apr 93
FF941862 Dr. LUBIN, MICHAEL
DOXYCYCLINE
100 mg 20/0
Take medication on empty
stomach one hour before or
two to three hours after a
meal unless otherwise
directed by your doctor.
02 11 (0 of 20)
Interviewer: If you eat lunch at 12:00 noon, and you want to
take this medicine before lunch, what time should you take it?

9. Numeracy:
Newest Vital Sign (NVS) (Weiss et al., 2005)
Interviewer: If you eat the entire container, how many calories
will you eat?

10. Jordan JE, Osborne RH, Buchbinder R. Critical appraisal of health
literacy indices revealed variable underlying constructs, narrow
content and psychometric weaknesses. J Clin Epidemiol
2011;64:366-379
 reviewed development, content and properties of 19 indices
(originals and short-form derivatives; did not evaluate translated versions)
 3 measurement approaches: direct testing of an individual’s abilities, self-
report of abilities, and population-based proxy measures
 Findings:
 underlying constructs and content varied widely
 none appeared to fully measure a person’s ability to seek,
understand, and use health information
 content focused primarily on reading comprehension and
numeracy
 scoring categories were poorly defined
 few indices had been assessed for reliability

11. Jordan JE, Osborne RH, Buchbinder R. Critical appraisal of health
literacy indices revealed variable underlying constructs, narrow
content and psychometric weaknesses. J Clin Epidemiol
2011;64:366-379
 Conclusions:
 health literacy is not consistently measured
 this makes it difficult to interpret and compare health
literacy at individual and population levels
 empirical evidence demonstrating validity and reliability of
existing indices is required
 more comprehensive health literacy instruments need to
be developed

12. Health Disparities Research
 Long-term goals: Develop interventions to prevent health
disparities related to literacy, language and culture
 Short-term goals:
 Develop literacy-, language- and culture-fair tools for patient-
reported outcomes and patient education
 Develop better health literacy measures
 Validate these tools and measures in research and clinical settings
 1999-2002, Evaluate patient attitudes & preferences (Coleman Found.)
 1999-2004, Develop TT/PP (R01-HS010333, TURSG-02-069-01-PBP)
 2005-2009, Develop TT/PP health literacy measure (R01-HL081485)
 2007- , Test TT intervention in cancer care (R18-HS017300)
 2010- , Test TT/PP intervention in diabetes care (R18-HS019335)

13. Research on Health
Literacy Measurement
 A New Approach to Measurement of
Health Literacy in English and Spanish
(Hahn; R01-HL081485)
Health Literacy Assessment Using
Talking Touchscreen Technology
(Health LiTT)
(Yost et al., Patient Educ Couns 2009;J Health Commun 2010;
Hahn et al., J Health Commun 2011)

14. Literacy and Technology Skills
Required to Function Optimally as a Patient1
Literacy Technology
Medical
Oral Writing Reading Computers Multimedia
Instruments
Prose3
Listening2 (Understand and use information
from texts)
Document3 3Three types of scales defined for the 1992 National
Speaking (Locate and use information from Adult Literacy Survey (NALS) and 2003 National
forms, tables, graphs, etc.) Assessment of Adult Literacy (NAAL)
Quantitative3
(Apply arithmetic operations using
Blue shading denotes areas of focus for R01-HL081485 numbers in printed materials)
2 1Adapted from: Speaking of Health: Assessing Health
Listening skills are needed to hear the recorded literacy
questions, but these skills will not be specifically measured Communication Strategies for Diverse Populations,
2002; and Health Literacy: A Prescription to End
Confusion, 2004.

15. The Talking Touchscreen
(Hahn, PI: AHRQ/NCI #R01-HS010333)
Hahn et al., Psycho-Oncology 2004; Qual Life Res 2007
La Pantalla Parlanchina
(Hahn, PI: ACS #TURSG-02-069-01-PBP)
Hahn et al., J Oncol Manag 2003; Med Care 2010

16.  The sound is very helpful because I don’t read
too good and listening to the recording really
helps.
 It was easy to understand; it was fun.
 At the beginning, I thought I would not be able
to do the surveys, but it turned out to be very
easy.
 Helpful; gives you more privacy.
 It’s good that there’s a Spanish survey for
patients who don’t speak English.
 Interesting; every clinic should have one.
 It’s about time that someone thought about
doing something like this for us patients.

17. Health Literacy Study Rationale
 unclear at what level low health literacy begins to adversely
affect health and health care utilization
 this may be due to the lack of precision for categorizing individuals in
the marginal health literacy category
 improving measurement in the “middle zone” will help:
 estimate the size of the population at risk from low health literacy
 identify vulnerable patients within a clinical setting
 clinicians and researchers need precise, brief measures
 that can be individually administered and scored in real-time
 to enable tailoring for the patient’s health literacy level
 to provide reliable & valid scores for use in testing interventions
 need to distinguish between Literacy and Language Barriers
 English and non-English measures must yield equivalent information
R01-HL081485

18. Definition of Health Literacy
for Measurement Purposes
Capacity Application
Theoretical Actual
Read and comprehend
health-related print Apply health-related
material information to a Implement an
health care situation appropriate decision
Identify and interpret and understand what and related behavior
information presented an appropriate in the management of
in graphical format decision or behavior one’s own health
SHOULD be
Perform arithmetic
operations
Capacity to obtain information (i.e., information-seeking)
is a navigation skill that will not be included at this time. R01-HL081485

19. Item Examples
Health Literacy Assessment Using
Talking Touchscreen Technology
(Health LiTT)
R01-HL081485

23. Patient Evaluation of Health LiTT
(n=610 English-speaking primary care patients)
Any difficulty using Not at all 93%
the touchscreen? A little bit 6%
Somewhat or quite a bit 1%
Ever feel Not at all 86%
uncomfortable, A little bit 11%
anxious, nervous? Somewhat or quite a bit 3%
Overall rating of Poor or Fair 4%
screen design Good 24%
Very Good 33%
Excellent 39%
Burden of 30 health Too many 14%
literacy questions About right 58%
(avg. 18 minutes) Could have answered more 28%
Rating of study Worse than expected 2%
participation About the same as expected 23%
A little better than expected 28%
A lot better than expected 47%

24. ###### |
High Literacy ~
~
Hard Items
########### |
|
|
Need items
| for high
|
| literacy
############ |
| people
|
########## |
|
|
########## | card10
Mean patient score→
| card7c
| card8a
###### | card9
|
####### | card8b
| card6
##### | card3a card7b
|
##### | card4
####
|
|
card3b card7a ←Mean item difficulty
|
## |
|
## |
| card2
# | card5a card5b
|
| card1c
|
| card1a card1b
|
# |
Low Literacy | Easy Items
~
~
# represents 18 people #### |

25. Item Response Theory Analysis Results (1-p model)
###~###~ ### ↑ (n=616 English-speaking primary care patients)
| EIZ3Q5
High Literacy # | ECA4Q1
Hard Items
### |
### |
#### |
# represents 3 patients # |
########### |
# |
#### | EMH4P1
#### | EAS5Q1 EIN1Q4
####### | EDB2D3
##### | EAS2D2 EIC1Q3
############ | ECA1P2 ECA3Q1 EIN1Q2 EIZ3P2
######### | ECA5Q1
########## | EIZ3Q4
Mean Patient Score →
####### | EIZ2P1 EMD2Q3
####### | ECA3Q2 EIN1Q8
########## | EHT3D3 EIZ3Q1 EMD2Q2
########## | ECA5D1 EOB2P2 EOB3D2
####### | EIZ1P1 EMH1Q1 EOB3D1
####### | EDB3Q1
#### | EMH3P1 EOB1P2
← Mean Item Difficulty
######## | EAS5D2 ECA4Q2 EDB2D2
####### | ECA1P1 ECA2P1 EDB5Q1 EIC1P10 EIN2P4 EIZ3D4
EIZ3Q2 EMH2D3
####### | EDB4P4 EHT1P2 EHT3D4 EIZ3D1 EMD2D2
##### | EAS2D1 EAS4P1 EDB2D1 EDB3P5 EDB5Q3 EHT1P6
EHT3Q1 EIN1D3 EIN1D7 EMH2P1 EOB3Q1
### | EDB5P2 EOB5P5
##### | EIC1P3 EIN1D1 EOB1P4
### | EIN1Q10 EIN1Q5 EIZ3D3 EMD4D1 EMH5P1 EOB2P10
### | EHT1P3 EIC1P7
#### | ECA4P1 EDB3D1 EDB3P1 EDB3P4 EIC1D2 EIN1D4
EOB5P2
### | EDB5Q2 EIC1P8 EMD2D3 EOB2P4
## | EAS5D1 EIC1P9 EIN2D3
## | EIC3P8
| EDB3D2
Low Literacy | EHT2P1 EIN1Q9 Easy Items
~ EIC1P6
↓ EAS1P1

26. Item Information and Reliability, and Distribution of Person
Scores Estimated by the Final 2-PL Calibration Model
(n=608 English-speaking primary care patients)
60
50
40
Information
Prose
30
rel.=.95
20
rel.=.90
Document
10 Quantitative
0
20 30 40 50 60 70 80
PI: Hahn; R01-HL081485
T-Score Hahn et al., J Health Commun 2011

27. Health Literacy Screening
in Clinical Practice?
 Depends on how the data are used.
 Screening can identify individual patient needs.
 this may be especially valuable when comprehension of health
information is critical (e.g., when patients need to make decisions
regarding stem cell transplant or hospice care)
 Health literacy data aggregated at the clinic level can help
identify what education materials and communication
strategies are appropriate and gauge the effectiveness of
practice changes after they are implemented.
Garcia, et al. J Support Oncol 8:64-69, 2010.

28. Health Literacy Screening
in Clinical Practice?
 To justify screening, several conditions must be met:
1. screening tests need to accurately and reliably detect limited literacy
2. the benefit of early treatment options to reduce adverse health
outcomes must be proven and available
3. the benefits need to outweigh adverse effects of the program (U.S.
Preventive Services Task Force, AHRQ, 2006)
 Risks: literacy screening programs could negatively impact
patient care by promulgating fear and labeling
Paasche-Orlow & Wolf. J Gen Intern Med 23:100-102, 2008.

29. What do patients think?

30. Agree that it is important for doctors/nurses
to know about their patients’ reading abilities
p=0.469 p=0.334 p=1.000
PI: Hahn; Coleman Foundation

31. Willing to have results of literacy survey
given to my doctors and nurses
p=0.697 p=0.157 p=0.189
PI: Hahn; Coleman Foundation

32. Many Patients Reported That They
Learned Something by completing
Health LiTT
 It was nice because it showed me and educated me on
drug addiction, mammograms, and how to read charts.
 Very interesting; learned a lot.
 It was very interesting. It showed me about my diabetes
and cancer and high blood pressure.
 It's very informative about different illnesses. It educates
and teaches us how to take control of our health.
 Very informative; learned a lot of things I didn’t know
about my health.
PI: Hahn; R01-HL081485

33. Health LiTT
Implications for
Policy, Practice or Delivery
 A bilingual, computer-adaptive test of health literacy will
enable clinicians and researchers to more precisely determine
at what level low health literacy begins to adversely affect
health and health care utilization.
 This tool will provide better opportunities to determine the
independent effects of limited English proficiency and limited
health literacy.
 By using novel computer-based methods for health literacy
assessment, this tool will increase the access of underserved
populations to new technologies, and contribute information
about the experiences of diverse populations with new
technologies.

34. Health Literacy Universal
Precautions Toolkit
AHRQ Publication No. 10-0046-EF, April 2010. http://www.ahrq.gov/qual/literacy/index.html
What Are Health Literacy Universal Precautions?
 taking specific actions that minimize risk for everyone when it is unclear which
patients may be affected
 e.g., health care workers take universal precautions when they minimize the
risk of bloodborne disease by using gloves and proper disposal techniques
How Can This Toolkit Help?
 Experts recommend assuming that everyone may have difficulty understanding
and creating an environment where all patients can thrive.
 Research suggests that clear communication practices and removing literacy-
related barriers will improve care for all patients, regardless of their level of
health literacy.
 This toolkit is designed to help adult and pediatric practices ensure that systems
are in place to promote better understanding by all patients, not just those you
think need extra assistance.

35. Research on Patient-Centered Care
 Improving the delivery of patient-centered health information is especially
important for vulnerable populations, e.g., patients with limited economic
resources, low literacy skills or racial/ethnic minority status.
 These patients experience greater disease burden, are less informed about
diagnosis and treatment, are less involved in disease management, are less likely
to ask questions of providers, and are less likely to be satisfied with
communication with their providers.
 Traditional patient education relies heavily on written material. However, these
materials are often written at high reading levels with poor usability
characteristics for patients with lower literacy.
 The use of new information technologies is a recommended strategy to improve
access to health information and to enhance the quality of communication.
 We are conducting two research projects that are relevant to the overarching
goal of Healthy People 2010 and 2020 of Eliminating Health Disparities.
 the focus area of Health Communication and Health IT endorses the strategic
use of communication and health information technology to improve health

36. Figure 1.1 Clinicians, patients, relationships (clinical and social), and health services are all integral to
patient-centered care. The interactions among these elements are complex(Epstein et al, 2005) and deficits in any
one area can significantly decrease the quality of patient care. [from 2007 NCI/NIH Pub. #07-6225 “Patient-
Centered Communication in Cancer Care”]

37. Strategies to Overcome Literacy Barriers
 Cancer Patient Education Software for English-
speaking cancer patients: Cancer Care
Communication (C3) (Hahn; R18-HS017300)
 Diabetes Patient Education Software for English-
and Spanish-speaking patients with Type 2
Diabetes: Innovative Adaptation and
Dissemination of AHRQ Comparative
Effectiveness Research Products (iADAPT)
(Hahn; R18-HS019335)

42. Radiation Therapy External
Beam

44. Chemotherapy How Given

45. Chemotherapy Intravenous

48. Patient Evaluation of CancerHelp-TT in Field Test
(n=13 English-speaking cancer patients)
Any difficulty using Not at all n=11
TT for questions? A little bit n= 2
Any difficulty using Not at all n=12
CancerHelp-TT? A little bit n= 1
Ever feel Not at all n=12
uncomfortable, A little bit n= 1
anxious, nervous?
Overall rating of Very good n=12
screen design Excellent n= 1
Poor, Fair, Good ---
Overall, how easy Very easy n=10
or hard to use? Easy n= 3
Hard, Very hard ---

49. Characteristics of Cancer Patients
Enrolled in C3 (n=127) (thru 10/15/11)
Female 83%
Age, years
mean (SD) 52 (10)
range 26 - 70
Race, ethnicity Hispanic 22%
Black, non-Hispanic 58%
White, non-Hispanic 14%
Other, non-Hispanic 6%

50. How much have you looked at booklets
or on the Internet for information about
health or cancer? (C3 Baseline, n=30)
Booklets or Internet
Pamphlets
Not at all 13% (n=4) 45% (n=13)
A little bit 23% (n=7) 17% (n=5)
Somewhat 23% (n=7) 7% (n=2)
A lot 40% (n=12) 31% (n=9)

51. Adapted from Degner et al. J Nurs Meas. 1998; 6:137-153.

52. Baseline: <1% (n=1) 11% (n=12) 52% (n=58) 29% (n=33) 7% (n=8)

53. C3 Discussion and Implications
 Talking Touchscreen (TT) is a practical, user-friendly
method for assessment of patient-reported outcomes
 CancerHelp® patient education program has been a valued
resource since 1994
 Purpose of integrating these two HIT applications:
• to improve access to health information
• to enhance the quality of health care communication
 CancerHelp®–TT:
• meets security requirements in DHHS Automated
Information Systems Security Handbook
• programmed as a flexible, web-based research
application that could be linked to an EMR system

54. Thanks to the agencies that funded this
research: AHRQ, NCI, NHLBI, ACS, Coleman!
Thanks to the dozens of co-investigators,
collaborators, consultants and research staff who
contributed to these projects!
Thanks to all the patients and community members
who participated in our research projects!
What questions do you have?