Department of Clinical Epidemiology, Monash University Presentation given at "Health Literacy Network: Crossing Disciplines, Bridging Gaps", November 26, 2013. The University of Sydney.

1. Heath Literacy Network: Crossing Disciplines, Bridging
Gap, Sydney, 26 Nov 2013
Rachelle Buchbinder
NHMRC Practitioner Fellow
Director, Monash Dept Clinical Epidemiology, Cabrini Hospital
Professor, Dept. Epidemiology & Preventive Medicine,
Monash University

2. Where did the term „health literacy‟ come from?
*Attributed to Scot Simonds 1974:
„…arguing case for school health education with the intention
that pupils would not only be educated in the customary
curriculum subjects but might become as literate‟in health
as they were, for example, in history and science.‟
Subsequently acquired a more limited technical meaning:
„…the currency patients need to negotiate a complex
health care system” e.g. ability to read and comprehend
prescription bottles, appointment slips and other essential
health-related materials required to successfully function as
a patient‟ AMA Council of Scientific Affairs (Selden C, et al NIH, 1999)
*Tones K. Health literacy: new wine in old bottles? Health Educ Res 2002:17:287-90.

3. • “
‟
”
• “
”
• “
”
• “
”

4. Why is health literacy important?
• Clinicians/health workers need to know a person’s capacity
to process and understand health information to be able to
communicate with them effectively
• Policy makers need to understand the community‟s capacity
to gain access to and understand health information to be
able to set appropriate policies, provide appropriate
resources
• Researchers need to understand these issues to make correct
judgments about research methods, findings etc
• Health literacy is a fundamental element of self-care, and
should be considered when developing interventions

5. How can we assess health literacy?
• Neglected area of clinical training/care
• Routine screening - controversial
Takes too long
Might embarrass the patient
Might stigmatize those with low literacy
Might avoid low-literacy patients
Clinicians not trained, beyond scope
Screening – ?effective intervention
Ethical not to?

6. How can we assess health literacy?
• Ask the patient?
• Poor reliability – shame, hide it well
• Educational attainment
• Often used as a proxy but poor indicator
• Clinician estimate?
• Often wrong (overestimate or underestimate)

7. Educational attainment?
45
40
35
30
25
%
Grade attended
Reading Level
20
15
10
5
0
0-3
4-6
7-8
10-12 >12
Grade
Larson I, Schumaker HR. Comparison of literacy level of patients in a VA Arthritis Center with the reading
level required by educational materials. Arthritis Care Res 1992;5:13-16.

8. How has health literacy been measured in
research studies (that link low health literacy
to poorer health outcomes)?
• Health Literacy has been assessed through
measuring reading ability, comprehension and word
recognition skills
• 3 key tools used with patients:
– Rapid Estimate of Adult Literacy in Medicine (REALM)
– Test of Functional Health Literacy in Adults (TOFHLA)
– Newest Vital Sign

9. Rapid Estimate of Adult
Literacy in Medicine: REALM
66 words
Davis TC, et al. Rapid estimate of literacy levels of adult primary care patients.
Fam Med 1991;23:433-5.

10. Test of Functional Health Literacy in Adults: TOFHLA
Numeracy (17 items)
Parker RM, et al. The Test of Functional Health Literacy in Adults: a new instrument for
measuring patients‟ literacy skills. J Gen Intern Med 1995;537-41.

11. Test of Functional Health Literacy in Adults: TOFHLA
Reading comprehension (50 items)
Parker RM, et al. The Test of Functional Health Literacy in Adults: a new instrument for
measuring patients‟ literacy skills. J Gen Intern Med 1995;537-41.

12. Newest vital sign (NVS)
READ TO SUBJECT: This information
is on the back of a container of a pint
of ice cream.
QUESTIONS
1. If you eat the entire container, how
many calories will you eat?
Answer: 1,000
Weiss BD, et al. Quick assessment of literacy in primary care: the newest vital sign.
Ann Fam Med 2005;3:51-22.

13. Prevalence of low health literacy in Australia
• Application of existing measures of health literacy
• Population-based survey of health literacy
• Random sample adult population from 2004
electoral roll – 310 participants
• Face-to-face interviews
• Trained interviewers (n=10)
Barber M, Staples M, Osborne RH, Clerehan R, Elder C, Buchbinder R. Up to a quarter
of the population may have suboptimal health literacy: a population-based survey.
Health Promotion International 2009; 24:252-261.

14. REALM
(N = 310)
Grade 4-6
May need low-literacy materials; may not be able to read
prescription labels
Grade 7-8
May struggle with most currently available patient
education materials
High school
Should be able to read most patient education materials
TOFHLA
6 (2%)
35 (11%)
269 (87%)
(N = 309)
Inadequate
May be unable to read and interpret health texts
Marginal
Would have difficulty reading/interpreting health texts
Adequate
Could read and interpret most health texts
NVS
8 (3%)
13 (4%)
288 (93%)
(N = 308)
0-1
Suggests highly likely (50% or more) limited literacy
2-3
Indicates possibility of limited literacy
4-6
Almost always indicates adequate literacy
22 (7%)
58 (19%)
228 (74%)

15. ‟ ability to read and pronounce
common medical words and lay terms a
good measure of health literacy?

16. Pronunciation versus
definition REALM words
Pronunciation
% Correct
Hormones
Diabetes*
Obesity
Arthritis*
Osteoporosis
Definition
%
%
%
Partially
Correct
Incorrect
Correct
97
27
40
33
95
40
38
22
92
46
51
3
99
74
11
16
90
73
9
18
* Having the condition not associated with better definitions
Barber M, et al. Up to a quarter of the population may have suboptimal health literacy: a
population-based survey. Health Promotion International 2009; 24:252-261.

17. Pronunciation of words ≠ understanding of
words
!
Elder C, Barber M, Staples M, Osborne RH, Clerehan R, Buchbinder R. Assessing
health literacy: A new domain for collaboration between language testers and
health professionals. Language Assessment Quarterly 2012;9(3):205-24.

18. Understanding of words ≠ educational level
Figure 3
25
20
Number defined Correctly
15
10
5
Pearson Correlation Coefficient = 0.334
0
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m ho
et o
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So Sc
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gh
C gh
Hi
i
H
ty
si
fe
Ta
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Education Level
Elder C, Barber M, Staples M, Osborne RH, Clerehan R, Buchbinder R. Assessing
health literacy: A new domain for collaboration between language testers and
health professionals. Language Assessment Quarterly 2012;9(3):205-24.

21. Jordan J, Osborne R,
Buchbinder R. A critical
appraisal of the content and
psychometric properties of 19
health literacy indices. J Clin
Epidemiol 2010

22. Osborne, Batterham, Elsworth
Hawkins, Buchbinder
BMC Public Health
2013, 13:658.

23. Steps in questionnaire development
1.
2.
3.
4.
5.
6.
7.
Purpose and conceptualisation
Draft item development
–strict item writing rules, cognitive interviews
Administration to a „construction sample‟
Psychometric analysis and refinement
–Structural equation modelling
–Rasch analysis
Administration to a „validation sample‟
Finalization of the tool
Develop a web of evidence of the value of the tool in
target settings

24. Purpose of the HLQ
• Generic
• Identify potentially modifiable abilities and factors
• Capable of detecting a wide range of health literacy
needs of people in the community
• Could be used for a variety of purposes
– Descriptive of individual, clinical or whole population
– Evaluative - ie measure response to public health or
clinical interventions

25. Conceptualisation of health literacy
Seeding statement:
“Thinking broadly about your experiences in trying to
look after your health, what abilities does a person
need to have in order to get, understand, and use
health information to make informed decisions about
their health?”

26. Results: concept map (workshop #1)

27. Scales of the Health literacy Questionnaire
Strongly Agree—Strongly disagree
1. Feeling understood and supported
by healthcare providers
• I can rely on at least one healthcare provider
2. Having sufficient information to
manage my health
• I am sure I have all the information I need to
manage my health effectively
3. Actively managing my health
• I spend quite a lot of time actively managing my
health
Cannot do—Very easy
6. Ability to actively engage with
healthcare providers
• Discuss things with healthcare providers until
you understand all you need to
7. Navigating the healthcare system
• Work out what is the best care for you
• Decide which healthcare provider you need to
see
8. Ability to find good health
information
4. Social support for health
• Get health information in words you
understand
• Find information about health problems
5. Appraisal of health information
9. Understand health information well
enough to know what to do
• I have at least one person who can come to
medical appointments with me
• When I see new information about health, I
check up on whether it is true or not
• I compare health information from different
sources
• Read and understand all the information on
medication labels
• Understand what healthcare providers are
asking you to do

28. Breadth and depth
• Each scale is an independent questionnaire and
has items that measure a wide range of Health
Literacy needs and capabilities

29. Scales of difficulty…

Find information about health problems
Find health information from several different places


30. Distribution of scores

31. Osborne R, Batterham R, Elsworth G, Hawkins M, Buchbinder R. The grounded
psychometric development and initial validation of the Health Literacy Questionnaire
(HLQ). BMC Public Health 2013; 13: 658.

32. Healthcare Provider Support
Factor Loading
(95%CI)
R2
Difficulty
(95% CI)
Ordered
1 I have at least one healthcare provider
who knows me well
0.81 (0.77-0.85)
Yes
0.84
2 I have at least one healthcare provider I
can discuss my health problems with
0.90 (0.87-0.93)
Yes
0.99 (0.97- 1.01) 0.98
3 I have the healthcare providers I need help
me work out what I need to do
0.82 (0.78-0.85)
Yes
0.77 (0.72- 0.81) 0.58
4 I can rely on at least one healthcare
provider
0.90 (0.87-0.92)
Yes
0.91 (0.87- 0.94) 0.82
(0.80-0.8)
Model Fit – χ²WLSMV(2) = 10.15, p= 0.0063, CFI = 0.998, TLI = 0.995, RMSEA = 0.100, and WRMR = 0.367.
Composite reliability = 0.88 (0.86-0.90)
0.71

33. 40% of
people
cannot do
this or find it
very
difficulty
Measurement across the full range of the
construct through carefully written items
Ability to Access Health Information
Item
Difficulty
1. Find health information from several different
places
0.60
Hardest
5. Find information about health problems
0.78
Easiest

34. 40% of
people
cannot do
this or find it
very
difficulty
Measurement across the full range of the
construct through carefully written items
Ability to Access Health Information
Item
Difficulty
1. Find health information from several different
places
0.60
2. Get health information by yourself
0.64
3. Get information about health so you are up to
date with the best information
0.70
4. Get health information in words you
understand
5. Find information about health problems
0.74
0.78
Hardest
Easiest

35. 28% of
people
cannot do
this or have
great
difficulty
Measurement across the full range of the
construct through carefully written items
Active engagement with healthcare
providers
Item
Difficulty
1. Make sure that healthcare providers
understand your problems properly
0.72
2. Discuss things with healthcare providers
until you understand all you need to
0.78
3. Ask healthcare providers questions to get
the health information you need
0.78
4. Have good discussions about your health
with doctors
5. Feel able to discuss your health concerns
with a healthcare provider
0.82
0.86
Hardest
Easiest

36. Psychometrics of HLQ – highly robust
Scale
N items
1. Feeling understood and supported by healthcare providers
4
2. Having sufficient information to manage my health
4
3. Actively managing my health
5
4. Social support for health
5
5. Appraisal of health information
5
6. Ability to actively engage with healthcare providers
5
7. Navigating the healthcare system
5
8. Ability to find good health information
5
9. Understand health information well enough to know what to do 5
Reliability
0.88
0.88
0.86
0.84
0.77
0.90
0.88
0.89
0.88
Calibration sample N=634 (community health, ED, outpatients)
Replication sample
N=412 (ED: rural, younger people)
A 9-factor CFA model (44 items) no cross-loadings or correlated residuals allowed.
Highly satisfactory: χ2WLSMV(866 d.f.) = 2927.60, p<0.0000, CFI = 0.936, TLI = 0.930,
RMSEA = 0.076, and WRMR = 1.698.

39. Health literacy is much more than literacy
Have physical
access to
services
Able to put
health as a
priority
Trust in the
healthcare
system and
health
workers
Have the
energy and
strength to
engage
Have “cultural”
access to
services
Sense that
“health” is
worth the
effort
Believe that
various
health
actions will
be worth it
Be supported
by family and
community

40. Summary
•Health literacy is much more than literacy
•HLQ provides detailed information about
health literacy across 9 domains
•Capable of detecting an individual’s health
literacy needs
•Might be useful in identifying individual,
organisational, policy interventions
•Might change over time
•Might be responsive to change