Center for Health Literacy Promotion Blog
space, we discussed a prescription
for an ailing healthcare system from the European Patients' Forum: patient
Education: patients can make informed decisions about their health if they
are able to access all the relevant information, in an easily understandable
easy to underestimate patients, especially those who live in poverty. From being a single mom with a high
school education and limited skills,
I can tell you that basic essentials —adequate calories, a safe place to
sleep, money to keep the electricity on, shoes that fit, keeping a junker car
running, just getting through the day— come before organic vegetables,
exercise, and seeing the doctor for that nagging back pain. Getting by leaves
little time to study an insurance policy to figure out what's an EBO and
or a deductible or a network provider. Moms almost always find time for baby care, rarely for
self-care. When patients are
consistently stressed and distracted by daily life, it's easy to view them as marginally
competent and under- motivated to make informed decisions.
to all the relevant information…. No one in
the US has all the relevant information needed to make informed health
decisions. Insured or not,
patients have no way to evaluate the skill or knowledge of the provider,
or the reliability of a diagnosis.
Patients and providers rarely know the price of services or drugs. Treatments have risks. Results are
uncertain. Conflicting opinions and recommendations abound. Medical knowledge
changes daily. When you buy a car, you can read all the relevant information on
the sticker in the window.
Information about healthcare is incomplete and fluid at best.
easy to rely too heavily on information. Even if it's easy to understand, finding time and a
quiet place to absorb it, and the energy to interpret it in the context of
complex, often chaotic everyday lives is a challenge in itself. Acting on
information requires much more than personal skills, knowledge and
motivation. For example: A key
heath message for pregnant women (and everyone else) is to "eat well and
often". This is easy to
understand. Everyone wants to do it. But it is impossible in many poverty
neighborhoods, especially near month-end when money and food stamps run out.
vs appropriate decisions It is providers' challenge to respect and support
patients' informed decisions. It is easy to think that a patient makes inappropriate decisions because they
lack knowledge— they are uninformed; if they just understood, they would
take appropriate action. The
question here is: Appropriate for whom? And who says?
medically appropriate may be practically impossible due to cost or distance or
family dynamics. It may be culturally unacceptable. It may conflict with the
patients' practical knowledge and experience. I recall observing a Somali woman
in my county hospitals' international clinic. Standing tall and lovely in
yellow traditional dress, 40 weeks pregnant with a toddler clinging to her
skirts, she quietly, confidently, patiently refused several providers' efforts
to educate, persuade or frighten her into consenting to induction of labor.
"The baby will come when the baby is ready", she repeated. She
understood the information presented to her in various ways. She evaluated the information and made
an informed choice that, in western medicine, was inappropriate.
does not always look like compliance. And unquestioning compliance constitutes
neither health literacy nor empowerment.
information & education can achieve health literacy only with 1) direct support to make
personal meaning from the information and act on it in real life; and 2) laws,
policies, built environments that make the right choice the easy choice.
promote patient choice, we must acknowledge the conditions in which those choices will be
made and carried out. Then we must respect patients' choices and adapt
healthcare services accordingly.
prescribe E5 for sustainable health systems"
the tagline for a year-long patient-empowerment campaign launched in May by the
European Patients Forum, a coalition of organizations representing 150 million
Europeans, and the British, too, are looking at empowerment as a financial
imperative. And we should, too. Here's the problem: traditional healthcare systems were designed for infectious
disease. Treatment fitting the disease was prescribed and managed by
professionals while patients complied and were cured or died. That
disease-focused model prevails but cannot sustain treatment of modern chronic
conditions and aging populations where treatment needs differ, treatment
options are complex, patients self-manage and live decades with their
Literacy: an aspect of empowerment
campaign defines patient empowerment as a process that helps people gain control
over their own lives and increases their capacity to act on issues that they themselves define as important.”
Heath literacy is considered an aspect of empowerment
helps people gain control over their health and its determinants. Information and resources are
considered tools for empowerment.
If we consider information and
services as tools for empowerment, how would we design them differently? What
if the purpose of Informed Consent was to empower patient choice rather than
legally protect providers?
five “Es” of Empowerment:
• Education: patients can make informed decisions
about their health if they are able to access all the relevant information, in
an easily understandable format.
• Expertise: patients self-manage their
condition every day so they have a unique expertise on healthcare which needs
to be supported.
• Equality: patients need support
to become equal partners with health professionals in the management of their
• Experience: individual patients work with patient
organizations to represent them, and channel their experience and collective
• Engagement: patients need to be involved in
designing more effective healthcare for all, and in research to deliver new and
better treatments and services
empowerment is a challenge for professionals, too
the European stakeholders, including health professionals, agreed that a major
barrier to achieving the five Es
is health professionals' attitudes. This is not surprising, and it's
likely the same in the US. Special
knowledge has been a source of power and status for physicians for
centuries. Health education curricula is defined but de-funded in most schools
so patients often lack essential knowledge. Skills to collaborate with less knowledgeable patients as
respected, equal partners with useful expertise are not developed in medical
school. And there is never enough time.
analysis of US health literacy
discourse suggests that here, as in Europe, professional attitudes inhibit
patient empowerment. The term
empowerment is rarely mentioned. Patients are described' as
"difficult", "hard-to-reach" or "illiterate",
with "inadequate" or "marginal" skills, who
"fail" to comply or "just don't care". If empowering the patient was part of
every treatment plan, how would we describe patients differently? What would we do differently?
Follow them at @PatientsprescribE
Researchers gave 557 parents the Short Test of Functional Health
Literacy. Then they asked them if they had
a TV in the room where their child sleeps. Those who scored below the
“adequate” range for health literacy were more likely to have a TV in the
child’s room, and more likely to report their child slept less than the
reported mean. So the child’s inadequate sleep and related behavioral problems, poor school
performance and obesity s are attributed to parents “inadequate” or “marginal”
This report reminds me of the classic example in statistics
class: Research shows that men with hair in their ears are significantly more
likely to have heart attacks. The quiz: Does hair in the ears cause heart
attacks? Should we recommend removing hair from the ears to reduce risk? Should
we test all men with hairy ears for atherosclerosis?
Of course not
You’re right. The lesson is that association does not equate to
cause. Despite statistical significance, hair in the ears is not a reliable
indicator of elevated risk of heart attack. You can imagine the disservice to
men with hairy ears: anxiety, needless testing, unnecessary tweezing. I
wondered then, and still, why was that study published?
Statistically significant, practically meaningless
The TOFHLA is a
timed (7-minute maximum) reading comprehension test on instructions to
prepare for a medical procedure. Despite it’s name, it is widely criticized as
a test of health-related literacy and not a measure of the broader
concept of health literacy. TOFHLA
scores predicted the location of the TV, just as hairy ears predicted heart
Publishing the association as if it matters suggests that if
those parents could read better, they would know pediatricians recommend
against a TV in the nursery; and knowing that, they would comply; and therefore
the child would sleep more; and therefore, the child would be healthier.
That is a long line of assumptions that disrespects parents and
offers little guidance for improving their reading ability or their health
literacy, or for supporting
unskilled readers to be good parents, or for communicating more clearly that
location of the TV matters to the child’s heath. It should be noted that nearly
half of parents who performed well on the test also reported a TV in the
nursery; and a third of those who performed poorly on the test placed the TV
elsewhere. More than half of infants with a TV in the room had normal sleep
I have high respect for these researchers and their
contributions to the field. Still, this study is one that should not have been
published. It places way too much faith in a reading test that has long been criticized as an inadequate
measure, and not nearly enough
faith in parents.
A body needs about 500 mg per day. The American Heart Association
recommends not more than 1500 mg per day. The average American adult consumes
3400 mg per day. The average 4 year old consumes 2500 mg. More than 2300 mg is
linked to high blood pressure, hypertension, PMS, and kidney dysfunction. Can
you name it?
It's Na, sodium, soda—salt
If we reduced our average salt intake by 3g per day, strong and
clear scientific evidence says we'd have 60,000 to120,000 fewer new cases of
heart disease annually, 32,000 to 66,000 fewer strokes and 44,000 to 92,000
fewer deaths from any cause. All segments of the population would benefit,
particularly African Americans, women, elderly, children. Even if we gradually
reduced salt intake by 1g per day over the next 10 years, that would be more cost-effective than
using medications to lower blood pressure in all persons with hypertension.
That's why the Food and Drug Administration just issued sodium
reduction targets for the food industry. The news release includes a link to a summary of the
The Health Literacy Challenge
The evidence is undeniable. We need to reduce salt intake. But
it's a strident challenge. The American Heart Association offers some good
infographics advising us to "change our salty ways"; but the advice
is far from simple, and likely to have limited effect.
your sodium palate. Hardly
plain language. The imperative assumes understanding that a body wants what it
is used to getting. So if you eat less salt, after a few weeks you lose your
taste for it. And if you feed a toddler salty food, s/he develops a taste for
enjoying foods with less salt.
That means don't use the salt shaker at the table; but only about 6% of
our total salt intake comes from the shaker. About 75% comes from processed and
prepared foods. The rest is naturally occurring in almost all foods. So the
message means eat fresh fruit, vegetables and meats. That works if you can find
fresh food in your neighborhood, can afford to buy it and store it, and have
time and skills to prepare it. But we average Americans eat at fast food
restaurants 4 to 5 times a week. We favor "The Salty 6": breads and
rolls, cold cuts and cured meats, pizza, canned soup, sandwiches, poultry.
for lower sodium items. This directive assumes you know that salt and
sodium are the same thing and items means food. Looking for such items
means reading food labels (about 48% say they do), and knowing to add up items
listed as Na, soda, baking soda, sodium, salt— all salt.
The Numeracy Challenge:
What's a mg?
Sodium content is listed in mg —milligrams or g —grams. This is not informative. Only
scientists talk about grams.
Here's translation: 500 mg, the daily amount of salt a body needs to
function, is 1/4 teaspoon (that's a measuring spoon, not a spoon to stir tea)
or 3-4 shakes of the shaker. The recommended maximum intake is 1500mg or 3/4
tsp. The FDA wants the food industry to gradually reduce sodium in food
processing and preparation to get our average daily intake down to 2300 mg,
about 1 tsp. One gram is about 1/5
tsp. Here is a converter.
These challenges are part of the reason the FDA is working with
restaurants and food producers to lower the amount of sodium in the food supply
over the next ten years. You can read the proposed guidelines
on them. For best consideration comment within 90 days. Meanwhile, health educators, any way a
person can reduce salt intake even a little is likely to enhance their health.
Dang. I just discovered another bias in my thinking.
A belief I picked up on the way to a research degree? Knowledge someone taught me? Not sure.
It's one of those things everyone just knows- well everyone in US
research: US studies are better.
Higher quality. More relevant.
I made this uncomfortable, but horizon-widening discovery while
working on a scoping review to find out what is reported in the literature
about the impact of maternal health literacy on maternal-child health in the 0
to 3 period (pregnancy to child's third birthday) in the US. The review includes only US studies; in
part, because that's the defined task. But I wonder if we would have set that
The short answer to our US research question is: Not much. Most studies of parents'
health literacy are meditational analyses that explore how one variable (usually a low reading test score)
affects a second variable (most often understanding of condition-specific
information or utilization of services). If we distinguish maternal health
literacy from parents' health-related literacy, the number of US studies can be
counted on one hand. More on that useful distinction another time.
Interventions to improve health literacy are not so rare
US literature reviews agree that health literacy intervention
studies remain rare, especially community based studies geared to diverse low
literacy audiences. True in
I've found and saved, but excluded from the current review,
papers from Iran, Zambia, Ghana, Uganda, Paraguay, Madagascar, Nigeria…..These
reports are about community based interventions to improve maternal health
literacy in medically underserved poverty populations. The interventions are
designed to be feasible in low-resource settings. These studies from low and
middle income countries are likely to be quite relevant and informative for
many low and middle income American counties where literacy levels are low,
cultures are diverse, access to information and services is limited, and
poverty defines every day life for mothers and children.
Lesson learned: those who have the problem are most likely
to know the solution. We have a corner on resources, but not on scholarship and
Accessibility: A Universal Precaution
My dad states his age as older-than-dirt. He's lost all hearing and has a bad
back. He gets around with a walker. It's impossible for him to call the doctor
to report an issue or schedule an appointment. He cannot drive or use public
transportation. A routine office visit—getting dressed, out of the house, into
the car, out of the car, into the office and onto the exam table, and then the
whole process in reverse — each
step is an exhausting physical challenge and an assault on his pride. It's also
exhausting and trying for Mom, his primary caregiver, driver and emotional
compass. A check-up takes most of
a day. Nothing is simple.
Recently, Dad slipped off
the edge of the bed and twisted his knee trying to get up. That led to four 911
calls: one to get him up (and discover he could not stand), and three
"citizen assists" to get
him to the doctor's office, from there to the hospital, and after a night in
the hospital, to get him home and into bed. Thank you, my fellow tax payers.
He's not alone.
About 70 million of us Americans have such access needs that
affect hearing, vision, or mobility and impair capacity to obtain heath
information and services. People
with access needs contend with marked health disparities that may originate
from the most fundamental level
—like inability to schedule an appointment, open a pill bottle, or read the
fine print dosing instruction. Disparities also come from health professionals
and researchers acting on assumption and stereotyping instead of data.
Access: first pre-requisite to health literacy
Access, the capacity to obtain…. information and services,
is the first prerequisite to health literacy. And yet, several reviews report
accessibility is not a topic of health literacy research and scholarly
discussion. Further, access needs
is a missing demographic variable in most national databases.
Case in point: the 2003
National Assessment of Adult Literacy population sample included 30% with
access needs; among them nearly half (48%) were deemed to have below basic
health literacy. This is likely an underestimation since NAAL excluded those "who
could not be interviewed due to cognitive or mental disabilities" and did
not report demographics of those with access needs. A worldwide review of
interventions to improve health literacy reports that research has, for the
most part, followed NAAL's example and intentionally excluded people with
mental or physical disabilities, along with other disadvantaged or
"hard-to-reach" groups. Lumping together and then excluding "the
disabled" from research causes disparities to persist; it's ethically
questionable and alienating.
Reacting to a nurse who obviously assumed that his access needs
indicated a cognitive deficit, Dad retorted, " I've got a little back
problem. I can read."
Integrate accessibility into research, practice, policy
Health literacy standards should include accessibility and
universal design approaches that make healthcare environments and information
products usable to the greatest extent possible by everyone, regardless of
their age, ability, or status in life.
Health literacy research should include accessibility, directly involve
people with access needs, and report access-related demographics. To make the
research process itself accessible to those with access needs, reports, like
other health information, should
be available in multiple formats: standard, large print, Braile, text only
electronic format, audiotape, sign language.
Experts suggest we make
greater use of access-enabling assistive technology to communicate with people
with disabilities. The technologies show how universal design and commitment to
accessibility help us all; email,
voice recognition, captioning, GPS — all were originally designed for
those with access needs.
References & further reading
Perlow E. (2010).
Accessibility: Global Gateway to Health Literacy. Health Promotion Practice
11 (1); 123-131.
D'Eath M, Barry MM, &
Sixsmith J.(2012)tera Rapid Evidence Review of Interventions for Improving
Health Literacy. Stockholm: European Center for Disease Prevention and Control.
Health literacy (HL) thought
leaders on the National Academy of Medicine’s Health Literacy Round Table are
calling for a new standard definition of HL. Because there are too many definitions
in play and researchers have a tough literacy task just to choose one. And because various experts have come
up with too many piggy-back terms that connect specific content to the “central
concept”. And since we can’t measure things like “basic information” and
New definition to include
providers’ literacy, context, progress, action
The new definition would first and
foremost acknowledge that HL is multidimensional, that is, two sided— including
“both sides of the exchange”: literacy skills of individuals’ (patient or family members and “information
providers”) on one side, and system demands and complexities on the other. The broadened perspective recognizes
that healthcare professionals and other info-providers in insurance,
pharmaceuticals and IT, like patients, have literacy skills. Those skills may or may not enable
Those-Who-Know to understand what patients are saying or to communicate
the proposed broadened view acknowledges the role of context — “the
demands and complexities” of healthcare delivery and financing systems make it
difficult for everyone to participate in and obtain the full benefit of
healthcare, health promotion,
health protection, and “health coverage” (I think that means
The new perspective embraces
the notion of progress—well, shakes
hands, at least. HL is described
as a process or a pathway, implying that improvement is possible —although the
document never uses those terms, referring instead to process and change. Nonetheless, this is a big step away
from old evidence suggesting that adults rarely change their level of
functional literacy, and the surprisingly wide acceptance of the inference that
HL is a fixed individual trait.
Further, HL “operates” in various settings —
healthcare, insurance and pharmaceutical organizations are mentioned. And it
operates in various media, not
Finally, the new definition
will link decision and action. (Applause!).
Another big step from “appropriate decisions” usually interpreted as
compliance, to “informed action”, which may be against medical advice and still
not indicate a cognitive deficit.
Perspective, as the document is called, is indeed a welcome and overdue broadening
of the dominant view of HL as seen from US academic medical centers. However,
essential issues remain. Perhaps unresolved debates explain why a new
definition is not proposed, only described by its components.
Health Literacy is
dimension still missing
is not simply two sided. Literacy skills may be one dimension that exists
on “both sides of the exchange”,
but literacy itself is multidimensional.
The missing dimension in health literacy as defined in the US, and still
in the new perspective, is the social dimension.
is a social construct. Its meaning and measure are constantly evolving to
reflect society. Literacy is
different for different jobs, communities, goals, as well as for different
genders, ages, cultures, times and places. In the same way, the meaning of
health is also multidimensional, socially defined and evolving. Most healthcare decisions are made and
acted on —or not— in homes and communities in everyday
life, not by appointment in offices and hospitals.
At the intersection of health
and literacy, it is not surprising to find a diversity of overlapping, sometimes conflicting, always evolving
definitions and measures. Experts
did not come up with a bunch of new terms to tie their favorite content to a
clear central concept of HL — rather they recognized that the theory of
multiple literacies for multiple contexts (financial literacy, computer
literacy, Spanish literacy) applies to HL, too. So we have maternal HL, mental
HL, oral HL, teen HL, LBGT-HL, health insurance literacy, and many disease
Alternative: new improved
Try as we might to make health
literacy precise and clinical with biomarkers and specific corrective actions
that produce predictable results demonstrated in randomized controlled trials,
HL remains a social practice that is complicated, dynamic and messy. To understand and influence HL, the
challenge is not to distill its meaning down to something easy to research, but
to figure out how to research something messy.
Pleasant, A., R. E. Rudd, C. O’Leary, M. K. Paasche-Orlow, M. P. Allen, W.
Alvarado-Little, L. Myers, K. Parson, and S. Rosen. 2016. Considerations for a
new definition of health literacy. Discussion Paper, National Academy of
Medicine, Washington, DC.
Cook-Grumperz J (Ed). The
Social Construction of Literacy, Second Edition Cambridge University Press
Excerpt free online: http://www.langtoninfo.com/web_content/9780521819633_excerpt.pdf
Previously in this space we’ve said health literacy for
and health promotion is distinguished from
health literacy for disease treatment. The latter is typically operationalized
as functional literacy (reading and math) in a clinical setting. In contrast,
to improve risk behaviors and conditions that affect their health, individuals,
families and groups use interactive and critical health literacy skills. These skill sets are applied mostly at
home and in the community. We’ve looked at critical health literacy.
Today we look at interactive health literacy, IHL for short.
As we might expect, research is limited
and controversy abounds.
Not much is known about IHL
PubMed lists just 13 articles on “interactive health
literacy”, two of them review
articles. I found no listings on “interactive health literacy” AND “parent” or
“mother”. Most IHL studies have been reported from outside the US.
Canadians Manafo and Wong
looked at IHL promotion programs for older adults with chronic disease. They
differentiated IHL from functional health literacy by the aim of the
intervention (skill development to increase capacity to find information and
make personal meaning from it vs. information giving to increase knowledge).
They found five studies on IHL for seniors, 1 from Canada, 4 from eastern U.S. All relate to training elders to search
for health information online. My understanding of Nutbeam’s model of IHL is
that it refers to interpersonal interaction and communication, not interactive
(vs. static) information.
The reviewed studies are limited by small samples, no comparison groups,
non-experimental design, non-comparable measures and outcomes.
The second review, from
England, is a concept analysis of critical health literacy. Sykes and
colleagues describe critical health literacy as a set of characteristics
including effective interaction between service providers and users. Key
attributes include social and communication skills, and interpersonal
skills. So critical health
literacy is seen as “arising from …ability to interact effectively”, that is to
navigate services, and to advocate and articulate confidently when
communicating with a health professional —IHL. This view looks at the faces of health literacy described by
Nutbeam as a hierarchy of skill levels that develop linearly. However,not all
scholars agree; and it seems difficult to separate interactive from critical
Measures of IHL
Two studies, one from Japan and one from the Netherlands, used
the Functional Communicative Critical Health Literacy scale which measures
frequency of perceived difficulty with tasks indicative of the three levels.
These authors describe IHL as the skills that can be used to participate
actively in everyday situations, extract health information and derive meaning
from different forms of health communication and apply it to changing
circumstances, while critical
health literacy refersto
ability to exert control over health. Among Japanese patients with diabetes,
interactive and critical health literacy, but not functional health literacy,
were associated with self-efficacy, the most important factor in behavior
change. The Dutch authors conclude
that IHL was associated with ability to organize care, interact with healthcare
providers and perform selfcare.
Again, in these
studies interactive/communicative and critical health literacy skill levels
overlap and are difficult to differentiate. Indeed, in psychometric testing,
communicative (interactive) and critical health literacy were closely related
and findings were reported in two categories: functional vs. communicative and
critical health literacy.
Rubin et al describe the
Measure of Interactive Health Literacy,
a 10-minute telephone-administered “performance measure of an
individual’s proclivity to engage in information seeking from health
information sources” For more info, see:
Skill levels or categories? All are needed to protect and promote
Another school of thought — the one I’m in — sees categories of
health literacy skills rather than levels. Individuals or groups combine skills from Nutbeam’s three
categories in different ways for different tasks and situations. Strength in one skill or skill set can
make up for weakness in another.
And a family or community
member can contribute skills that an individual lacks. That’s how health
literacy becomes a community asset.
information that is understood cognitively, is processed socially and
personalized to the particular context and circumstance. Interactive health literacy skills
combine with functional literacy (reading and math) and critical health literacy
skills to empower individuals and communities to use information for health and
gain control over its determinants.
Reference & further reading
Manafo E & Wong S (2012). Health literacy programs for older adults: a systematic
literature review. Health Education Research 27 (6); 947-960.
Sykes S, Wills J, Rowlands G, & Popple K. (2013).
Understanding critical health literacy: a concept analysis. BMC Public Health 13:150
Rubin DL, Parmer, J, Friemuth V, et al. (2011). Associations
Between Older Adults Spoken Interactive Health Literacy and Selected Care and
Health Communication Outcomes. Journal of Health
Communication 16sup3, 191-204. doi:
Ishikawa H, Takeaki T, &Yano E. (2008). Measuring functional,
communicative, and critical health literacy among diabetic patients.
Diabetes Care 31 (5),874-879.
Van Der Heide I, Heihmans M, Schutt AJ, et al. (2015).
Functional, interactive, and critical health literacy:
Varying relationships with control over care and number of GP visits. Patient Education
and Counseling 98 (8), 998-1004.
SNAPW: Improve these behaviors to prevent chronic disease
Smoking, Nutrition, Alcohol,
Physical activity, Weight
find out which providers can improve health literacy for prevention, Australian
researchers completed a systematic review of quantitative studies (What works?)
and narrative synthesis of qualitative work (Why? How?). The review covers
research published 1985 to 2009, much of which was done by US researchers. The
authors focused on “members of the primary care team” —providers working in
general and family practice, community health, home nursing, private or public
allied health, health education, or information— and evaluated their effectiveness in promoting
positive change in health literacy and SNAPW behaviors. The researchers ran into some
issues that I’ve come up against in an ongoing scoping review to discover what is known about the impact of mothers’
health literacy on maternal-child health. Health literacy and related concepts
are poorly indexed, so it is necessary to search on lots of terms. The Aussies
wrestled 4691 papers down to 94. We started with 2600+ and are still wrestling.
There are many varied outcome measures. There are 50+ instruments to
measure functional heath literacy (reading & math) and none to measure interactive
or critical health literacy.
Nonetheless, this research report is on my must-read list.
Take Home Messages
1. Health literacy can be improved; 71% of reviewed studies demonstrated improvement in
health literacy. (A round of
applause for the researchers who published what did not work.) Some interventions improved
health literacy (measured as knowledge, skill, attitude, self-efficacy, states
of change, motivation, or patient activation) without affecting behaviors. This
result supports other findings that knowledge and skill do not necessary
translate to health promoting action; people make informed choices to not
act on what they know.
On the other hand, some interventions resulted in improved behavior
(smoking) without affecting health literacy; that supports previous findings
that specific knowledge may not be a prerequisite for behavior change. One RCT*
found that brief counseling by a physician led to increased patient action, but
only those who were referred to group programs demonstrated improvement in diet
and weight. I suspect that
improvement in one health literacy indicator is insufficient to support
behavior change, which likely requires some combination of knowledge and
skills and motivations and self-efficacy and social
2. Non-physician providers are effective health literacy promoters. Nine of 10
interventions provided by nurses, dietitians, health educators (92%) or
multidisciplinary teams (91%) improved health literacy. Compare that to three
of nine (33%) interventions provided by physicians.
3. Intensity of the intervention seems to be the
difference. One study found the
average length of visit with a primary care physician was 8 minutes shorter
than the time it takes to deliver smoking cessation counseling. Indeed, time
was the barrier to improving health literacy most frequently mentioned
mentioned by providers, followed by attitudes and beliefs. Most
physician-delivered interventions were brief, one-time encounters. In
comparison, interventions delivered by non-medical service providers ranged
from 6 hours to 2 years. Limited time in clinical settings may preclude the
trusting relationship required to support behavior change.
Moderate to high intensity
interventions are needed to address SNAPW behaviors. Production demands in primary care settings (see 30 patients
a day) limit physicians to brief interventions that can increase knowledge and
motivate patient action but rarely result in improved behaviors.
Call to Action
Clinicians: to improve health literacy for
prevention of chronic disease, collaborate with-, refer to- and promote
participation in intensive programs led by other health professionals and
educators, home visitors, community health workers, dietitians, public health
nurses, social workers, case managers, parent educators, program directors:
collaborate with clinicians to integrate health literacy promotion into your
usual activities, organize referral relationships, bridge home and healthcare.
*RCT: Randomized Controlled Trial
Dennis S, Williams, A, Taggart J,
et al. (2012). Which providers can bridge the health literacy gap in lifestyle
risk factor modification education: a systematic review and narrative
synthesis. BMC Family Practice. 13:44. 91 citations. Open Access. Free at http://www.biomedcentral.com/1471-2296/13/44
Health literacy is not just for
Mothers, and the rest of us, use
heath literacy across three domains: disease treatment, disease prevention and
health promotion . We should address those domains in opposite order. If we put
health literacy for enhancing health first, we would have less need to struggle
with disease and treatment.
Most health literacy research has
taken place in US academic medical centers. The focus has been exclusively on
disease treatment. In Australia, they differentiate this narrow
conceptualization as medical literacy. In these lines of inquiry, health literacy is
operationalized as low reading skill in a clinical setting. It is identified by
brief reading tests using medical terms. Since the problem is perceived as
limited reading skill in patients, the solution is to reduce the literacy
demands of medical and insurance information and improve its delivery. The goal is to enable patients to
better manage disease and improve treatment outcomes.
Quality information is essential
for accessible, quality healthcare. But the clinical approach cannot achieve
the national vision of a health literate society . That requires ramping up
the public health model of health literacy.
Health literacy to prevent risk
from escalating to need
From a public health standpoint,
health literacy is seen as a personal and community asset that can be developed
. The asset enables and empowers individuals, families, communities to use
information and services to protect and promote health. This is health literacy
in everyday life.
11 reasons to refocus on health
literacy in everyday life
1. Americans spend about 1 hour per year in a clinical
setting . Health is lost or gained, protected, promoted and managed in the
other 8759 hours at home and in the community.
2. Low literacy is one among many interrelated personal,
systemic, social and environmental factors in patients’ “failure” to engage and
comply with medical care and preventive practices.
3. Poor outcomes are not fully explained by low literacy.
Medical care can be hazardous to health.
In 1999 the Institute of Medicine shocked the nation with its report
that medical errors alone accounted for about 100,000 deaths per year . In
2015, estimates are up to 400,000 deaths annually due to preventable medical
errors— that is 1000+ deaths— plus 10,000 serious complications cases—
resulting from preventable medical errors every day 
4. About 10-15% of early deaths could be avoided by more
accessible or otherwise better medical care. The low potential is not so
surprising since we spend 95%  of our $3 Trillion national health investment
— 16% of the GDP  — on medical treatments.
5. In contrast, about 40% of early deaths are caused by
behaviors . This figure takes on greater significance in light of recent
reports of declining life expectancy among middle-aged Americans.
6. About 30% of early deaths are due to genetic
predisposition , which takes us back to behaviors, which can determine
whether a gene is expressed.
7. Another 15% of deaths are attributed to social
8. The remaining 5% are due to environmental exposures
9. The potential payoff from improving health literacy
for disease treatment is up to 15%. Compare that to a potential 40 to 90% payoff
from improving health literacy for disease prevention and health promotion.
Affordable Care Act is shifting resources to prevention and health
understanding of DOHaD — Developmental Origins of Health and Disease— led the
United Nations General Assembly to recommend all nations work to promote health
literacy [in the public health asset model] as a global strategy to address the
burdens of non-communicable disease .
It is time for Public Health to
Public Health has, especially in the US, with some
encouraging exceptions, approached health literacy in the medical model with
research questions related to the risks of low literacy (reading, math skills)
to potential patients and healthcare systems. Can the public understand when
and how to call 911? disaster preparedness guidance? emergency communications?
health insurance options? Leading public health scholars have argued that
health literacy is behavior change and health literacy improvement can
be measured by changes in a person’s or a community’s actions, practices and
behaviors  indicating increasing autonomy and capacity to produce the
identified consequences of improved health literacy: positive changes in risk
behaviors, selfcare, and health services utilization [1,9]. At least five published studies now
demonstrate the feasibility of directly improving health literacy through usual
health promotion activities: health education, skills development, and direct
information assistance. Groups like Just Health Action are promoting
community health literacy.
have strong theory, available measures, and early evidence. We have a federal mandate, and an
international call to action. We need leadership and resources to build the
science around the public health model of health literacy as a personal and
community asset to be developed.
Because the highest and best use of health literacy is to prevent health
risk from escalating to medical need.
References & further reading
1. Sorenson, K., Van den Broucke, S., Fullam, J., Doyle, G.,
Pelikan, J., et. al. (2012) Health literacy and public health: A systematic
review and integration of definitions and models. BMC Public Health 12:80. www.biomedcentral.com/1471-2458/12/80
2. Nielsen-Bohlman, et al. (1999) Health
Literacy: Prescription to End Confusion, Institute of Medicine.
Nutbeam, D. (2008) The evolving concept of health literacy. Social Science & Medicine 67, 2072-2078.
6. Institute of Medicine (1999). To Err is Human: Building a Safer
McCann, E. (2014). Deaths by Medical Mistakes Hit Records. HealthcareITNews. Free online:
8. United Nations Economic and Social
Council. (2010). Health literacy and the millennium development goals: United
Nations Economic and Social Council regional meeting background paper. Journal
of Health Communication15, 211-222.
Sykes, S., Wills, J., Rowlands, G. & Popple, K. (2013). Understanding critical health literacy: A concept analysis. Biomed Central Public Health:13:150. Open Access: http:www.biomedcentral.com1471-2458/13/150