Center for Health Literacy Promotion Blog
National and international policy documents frame improving
health literacy as a pragmatic intervention to reduce health disparities. But
what links health literacy and disparities?
Since the social
determinants of health shape parents' health and health literacy, which in turn
shape their children's early development and adult disease; health disparities
start even before birth and perpetuate. Therefore, health follows the social
gradient and disease concentrates among the disadvantaged. Improving maternal
health literacy, and in the
process empowering disadvantaged mothers, can reduce disparities by enabling
mothers to better reduce risk, maximize protective factors, and obtain the
benefits of health and social services. Further, mothers make 80% of health care decisions for their
families, take them to appointments (84%) and ensure they get recommended care
(79%). The LSP health literacy studies indicate that mothers retain and
hone their improved skills.
Furthermore, by default or by design, mothers pass
their skills —whatever they are— to their children in the course of everyday
interactions. For these reasons, it is a logical health and financial
imperative to make maternal health literacy the first priority in health literacy research and intervention that
aims to reduce disparities and future burdens of chronic disease.
Ranji U & Salganicoff A. (2011). Key Findings from the
Kaiser Women's Health Survey, Kaiser Family Foundation
US Dept of Labor General Facts
on Women and Job Based Health (2013)
The ACA was enacted in 2009.
Implementation began in 2010. Big improvements despite resistance. More to do.
43 Percentage reduction in the US the uninsured rate since 2010.
20,000,000 Newly insured under the ACA
55,600,000 Women who gained access to contraceptive coverage, screening and counseling for interpersonal violence.
$20 Billion Amount seniors saved since 2010 closing of the prescription coverage gap.
< 0 Annual growth in per-enrollee
Medicare spending 2010-14
1.1 Percent annual growth in private insurance spending since
2010 (vs 6.5% 2000-5
28 Percent by which CBO* has reduced it
projections of Medicare costs for 2019
474,700 Healthcare jobs created in 2015. Healthcare employs 15.3 million
9 Percentage of Americans uninsured in 2015
29,000,000 Still uninsured
19 States whose Republican governors refused
60 Congressional attempts to repeal the ACA
Source: Obama B. (2016). Us Health
Care Reform: Progress and Next Steps. Journal of the American Medical
Association 316(5). Free online. DOI: 10.1001//jama.2016.9797
Commins J. (2016, Jan 12).Healthcae
Job Growth Sets Record in 2015. HealthLeadersMedia
*CBO: Congressional Budget Office
“The building blocks
of good health have their foundation in social and emotional skills learned
during early childhood,”
Natalie McGill, The Nation’s Health, August
Health literacy is one of those
building blocks for good health that develops from social and emotional
skills learned in infancy and toddlerhood. Building blocks for heath and health
literacy are emerging life skills that enable individuals to deal effectively
with the demands and challenges of everyday life: problem solving, planning
ahead, considering consequences, taking turns,asking questions, listening,
providing information, getting help, learning from experience.
children learn these skills early from everyday interactions with their
parents, and then in preschool
through daily routines, games, stories, conversations and planned and impromptu
Before they learn to read, lucky children learn to apply their
emerging social and emotional skills to protect and promote their health: Wash your hands. Brush
your teeth. Get plenty of sleep. Eat your vegetables. Drink your milk. Cover
your sneeze. Put tissues in the trash. Wear shoes outside. Use sunscreen and a
early skills and health practices place lucky children on a trajectory to
healthy adulthood. They develop to keep adults on a trajectory to healthy old
+ SDoH = HL
idea of a health trajectory across the life course, from preconception to old
age rises from increasing understanding of the Developmental Origins of Health
and Disease —DOHaD. Today’s
defining heath challenge is non-communicable disease with origins in early
development: heart and lung disease, diabetes, obesity, some cancers —the
leading causes of death worldwide. Parents’ health at conception, risk
behaviors and healthcare in pregnancy and beyond, parenting practices, and
healthcare utilization combine to define their child’s adult health.
The Social Determinants of Health (SDoH) —especially parents’ income
and education—also influence a child’s health trajectory and can change
it. For example, say Dad gets a
new job. The family moves to a better zip code. The child goes to a better
school and plays outdoors more, has access to higher quality food and better
healthcare, and enjoys more attention from less stressed parents. That lucky
child grows up healthier than the child who continues to accumulate social
disadvantage in the old neighborhood.
lucky children miss basic skills for health
who did not learn foundational skills cannot pass them on to their children.
Even if they read well, they face strident challenges to use information
and services in ways that maintain or promote health. They are more likely to
live in poverty, and to report poorer health status. They are more likely to
have children with developmental delays and less likely to participate in Early
Intervention services. They are less likely to have access to quality early
learning programs for their children, and less likely to talk and read to their
children. So their children are likely to be less healthy and less socially,
emotionally, and cognitively ready for school compared to their luckier
peers. Like their parents, they
are less likely to understand basic health concepts, eat well, or engage in
preventive practices. So they are
more prone to disease as adults.
Health literacy, and other building blocks for
a lifetime of good health, have their foundation in social and emotional skills
learned during early childhood. Children learn these foundational skills in
everyday interactions with parents. Develop parents’ foundational skills along
with their health literacy to put
them and their children on a trajectory to healthy adulthood and old age.
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