here - Faculty of Social Sciences

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Health literacy in the information age:
How a good thing may turn into
something bad.
Peter J. Schulz
Institute of Communication & Health
University Lugano
Institute for Research in Social Sciences & School of
of Communication Research Seminar, University of Ulster
February 2013
Literacy domains
biological literacy
environmental literacy
multimedia literacy
civic literacy
family literacy
new media literacy
climate literacy
financial literacy
network literacy
computer literacy
health literacy
organizational literacy
consumer literacy
information literacy
political literacy
cultural literacy
internet literacy
religious literacy
dance literacy
legal literacy
science/scientific literacy
digital literacy
linguistic literacy
statistical literacy
ecological literacy
media literacy
technological literacy
economic literacy
multicultural literacy
television literacy
Schulz: Health literacy in the information age. IRiSS 2013
2"
Literature review
!  Databases: Pubmed, PsycINFO, Communication & Mass
Media Complete, CINAHL, SAGE Full-Text Collection,
Cochrane Library, GoogleScholar, GoogleBooks
!  Keywords: “kind of literacy” together with “theory”, or
“measurement”, or “model”, or “review” (where “kind of” was
replaced with literacy domain)
!  Inclusion criteria: English language; up to February 2010
Camerini A.L. et al., 2011
3"
3
Results: Number of unique references*
4"
Results: Dimensions included in concepts of
other literacy domains
(new) media information
literacy
literacy
science/
scientific
literacy
cultural
literacy
civic/
political
literacy
functional literacy
x
x
x
x
x
factual knowledge
x
x
x
x
x
procedural knowledge
x
x
x
awareness
x
x
x
critical dimension
x
x
affective dimension
x
attitudes
x
x
x
x
x
x
x
5"
Health Literacy
… “is the degree to which individuals have the capacity to obtain,
process, and understand basic health information and services
needed to make appropriate health decisions.” (Healthy People
2010)
6"
Definition of Health Literacy
… “is the degree to which individuals have the capacity to obtain, process, and
understand basic health information and services needed to make appropriate health
decisions.” Healthy People 2010, Institute of Medicine (2004)
What are basic health information?
How about 'skills' instead of 'services'?
Why not 'informed' instead of 'appropriate' health decisions?
Why does health literacy matter?
8"
Literacy and Health Outcomes
Health Outcomes/Services
" 
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General health Status
Hospitalization & Rehospitalization
Emergency department use
Asthma Control
COPD
Depression
Diabetes control*
HIV control*
Prostate cancer stage
Mammography*
Pap smear
Pneumococcal immunization
Influenza immunization
STD screening
Cost
Mortality
Behaviors
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Substance abuse
Breastfeeding
Behavioral problems
Adherence to medication*
Smoking*
Consent Process
End-of-life decision making
Knowledge
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Birth control
Pap screening
Emergency department
instructions
Asthma
Hypertension
Diabetes
And many more
Towards new concepts of Health Literacy
Consensus among scientists and policy makers:
! 
! 
Health literacy is more than functional literacy (reading, writing,
and numeracy skills) in the health domain.
There is a need for validated measurements to reflect the
extended conceptualizations of health literacy. (e.g. Mancuso
2009)
10"
Health Literacy – a topic also in
Europe?
! 
! 
! 
Several HL studies, including Switzerland – based on
measurements different from S-TOFHLA or REALM
Recently, validation studies of S-TOFHLA in German, French
and Italian (Connor, Mantwill & Schulz, 2012) and in Dutch (PEC
forthcoming). Also in the UK (von Wagner et al., 2007) and Serbia.
So far, no direct comparison possible with results from the U.S.
11"
Results – Reliabilitiy of Measures
Reading
Numeracy
Italian
.88
.62
German
.73
.33
French
.61
.80
Values are Cronbach’s a
12"
Results – Participants answering the reading
comprehension passages correctly
German
Italian
French
Scores
(correct
answers)
n
%
n
%
n
%
Inadequate
0-16
9
3.6
58
21.2
16
11.7
Marginal
17-22
7
2.8
33
12.1
7
5.1
Adequate
23-36
233
93.6
182
66.7
114
83.2
249
100.0
273
100.0
137
100.0
Health
literacy
13"
Expanding the concept of Health Literacy
What type of information does the patient need to build his
health literacy?
! 
! 
! 
Declarative knowledge (knowledge of the what) e.g.
explanation of what a certain condition is (use of
antibiotics)
Procedural knowledge (knowledge of the how) e.g. how to
maintain a healthy bodyweight through calorie restriction
and exercise;
Judgment skills: the ability to relate knowledge to her goals,
particularly in novel situations (e.g. self-medication)
14"
Broader concept of Health Literacy
Schulz & Nakamoto
2005
Medical
Expertise
Judgment Skills
Procedural Knowledge
Patient Literacy
Declarative Knowledge
Functional Literacy
15"
Limits of Health Literacy
“Someday, you’ll act like you understand.”
16"
Patients’ empowerment
Three views on empowerment
1. 
2. 
3. 
Normative view: through more egalitarian structures and a
better distribution of power patients will increase their
participation (Bhopal and White 1993; Sherwin 1992)
Health policy view: patients’ empowerment will help to
control healthcare costs (Neuhauser, 2003)
Medical view: Empowering patients will lead to better health
outcomes (Edwards, Davies, and Edwards 2008).
17"
Dimensions of patients’ empowerment
! 
Meaningfulness: relevance of managing one’s disease
! 
Competence: sense of competence to manage one’s disease
! 
Self-determination: sense of autonomy to manage one’s disease
! 
Impact: sense of control over the outcome of disease management
(Based on Thomas & Velthouse, 1990; Spreitzer, 1995)
18"
Health Literacy & Empowerment
Elements of Health Empowerment
Volitional
Components:
Literacy
Components:
Relevance
Competence
Self-Determination
Impact
Declarative &
procedural
Knowledge;
Judgmental skills
Sources/Influencers:
Lay sources
Mass Media (& Internet)
Government
Health Professionals
Decisions(
Effects:
Constructive & Destructive Activities
Health Status
Quality of Life
Schulz & Nakamoto, 2012 PEC
19"
Literacy, empowerment, and Patient Behavior
Psychological Empowerment
Low
High
Low
High-needs
Patient
Dangerous
Self-manager
High
Needlessly
Dependent
Patient
Effective
Self-manager
Health Literacy
20"
Can web-support increase the level of health literacy
and empowerment?
The(poor(diabe0c(website,(2011(
21
Health Literacy & Empowerment
Elements of Health Empowerment
Volitional
Components:
Relevance
Competence
SelfDetermination
Impact
Camerini & Schulz, & 2012 JMIR
Literacy
Components:
Decl. knowledge
Proc. knowledge
Judgmental skills
Decisions(
Sources/Inﬂuencers:(
Lay"sources"
Mass"Media"(&"Internet)"
Government"
Health"Professionals"
Eﬀects:(
Construc4ve"&"Destruc4ve"Ac4vi4es"
Health"Status"
Quality"of"Life"
22"
www.oneself.ch
HL model implementation
Sec$ons(
(
Health(literacy(levels(
Declara4ve"
knowledge"
Radio"
x"
Library"
x"
Gym"
Procedural"
knowledge"
Integra4on"with"
existence"and"
goals"
x"
x"
Forum"
x"
Chat"
x"
The"Specialist"Answers"
x"
TellUaUStory"
x"
eHealth effects on Health Literacy & Empowerment
Camerini & Schulz, 2012 JMIR
25"
Methods
Experimental study:
165 FMS patients were randomized in 3 groups/conditions:
Group 1: patients were provided with a static version of ONESELF (baseline)
Group 2: patients were provided with an interactive-only version of ONESELF
Group 3: patients were provided with the full-fledged version of ONESELF
They completed a pre-test and a post-test after 5 months of navigation.
Cross-sectional study
! 
! 
209 patients registered to ONESELF were recruited and asked to complete
a cross-sectional survey.
The cross-sectional study was conducted 5 months after the end of the
experiment.
26"
eHealth effects on Health Literacy & Empowerment
Camerini & Schulz, 2012
JMIRc
27"
Direct effects of the eHealth intervention
! 
! 
Strongest impact of the eHealth intervention was on the
empowerment dimensions of meaning, competence, and impact.
Knowledge and self-determination were not affected. This is likely
due to the specific patients involved in the study:
! 
FMS patients in the sample had been suffering for 6 years on average.
! 
FMS is regarded as a fatality rather than as a causally predictable event.
28"
“I expect you all to be independent, innovative,
critical thinkers who will do exactly as I say!”
Internet and the Limits of Health Literacy
Empowerment raises the problem of patient action based
on:
• 
Insufficient information
• 
Inaccurate information
• 
Misuse of information
30"
Internet and the Limits of Health Literacy
! 
! 
! 
! 
Available information on the Internet assists patients and
consumers in making healthcare decisions.
Even if the information is of high quality: it is neither
universal (e.g. most side effects are rare) nor is it tailored to
the patient.
Medications are not suitable for all patients; even when they
are, they will not be effective for all patients.
Information lacks any calibration of probabilities of
effectiveness etc. to specific patients.
31"
The importance of background knowledge
!  The utility of health information depends on the recipient’s
background knowledge that is necessary for understanding the
new information and evaluating it adequately.
!  Background knowledge is:
# 
# 
# 
# 
a form of non-declarative knowledge,
a form of individual dispositions such as experience specific to a field
necessary to assess situations adequately
required because related information has to be understood and
considered in behavioral decisions.
!  Information placed before a different background knowledge
(physician versus patient) has a different impact.
32"
Patients’ expertise and the Internet
! 
! 
! 
! 
Patient’s unique expertise is in the specifics of their
symptoms, their experience of the health condition, and
their health goals.
A problem arises when a patient receives information that
she cannot assess adequately.
The Internet is ill-constituted as a decision support for the
patient: its flexibility makes it dangerous.
The patient’s own preferences, wishes, and predilections
will govern information search: this might lead a patient to
build a knowledge structure oriented to their wishes rather
than reality.
33"
The Internet and Empowerment
!  Need: search tools and websites that, rather than pretending
to support medical decisions, relate the criteria that have to
be considered in health decisions
!  E.G.: description of medication: Information has to be
detailed into
(1)  the decision to treat the condition by medication or other measures
(improved diet, exercise, etc.),
(2)  the decision to prescribe a particular type of medication
(3)  the decision to choose a particular drug.
!  Avoid easy but dangerous choices
34"
Custom Search:
Between Bad Literacy and Guided
Navigation
!  Experiment to study the effect of quality and biased Internet
sites
!  Subject: Trust in, knowledge of and attitudes to vaccination
(MMR)
!  Three groups: (1) normal Google; (2) Google manipulated to
find good quality sites, evaluated by HON code; (3) Google
manipulated to find anti-vaccination sites
!  Pre-post-test with 39 students, were given 12 minutes to find
information
!  Measures: trust, knowledge. attitudes, perception of quality and
bias
35"
Custom Search:
Between Bad Literacy and Guided
Navigation
!  Students to whom the search engine offered high-quality sites
(Group 2) learned more...
!  … and rated the importance of vaccination and its effectiveness
against swine flu higher than the other groups.
!  Students to whom the search engine offered biased antivaccination sites (Group 3) became more concerned about
vaccination side effects and more convinced of its harms than
the other groups.
!  The beneficial effects of high-quality sites and the detrimental
effects of biased occurred irrespective of subjects’ subjective
assessment of site quality and site bias.
36"
Concluding remarks
Health Literacy – a topic that requires further research in
social sciences
! 
Broader concept: the interplay between health literacy and
volitional empowerment is critical to patients’ autonomy.
! 
! 
Two different directions for future research in Health Literacy:
! 
(1) Improving information material
! (2) Focus on the patient as active consumer
! 
The guided literacy presents new challenges for health
professionals and web content providers.
! 
37"
The ICH group
3.12.12"
Funding support:
Swiss National Science Foundation &
European Union
Presenta4on"Title"
38"

here - Faculty of Social Sciences

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