Center for Health Literacy Promotion Blog
From the Opinion:
the past 2 decades the lens of health literacy has widened greatly. In addition
to focusing on the needs of individual patients, the field now brings the
promise of greater commitment and shared responsibility from clinicians,
institutions, and care systems.
the highest respect for Drs Koh & Rudd, I propose the lens is not widened enough to achieve national
heath literacy has not focused on the needs of patients so much as on their
deficient reading skills and limited medical vocabulary and the risks and costs
those deficits present to clinicians, institutions and systems. The health literacy lens has
widened, but not enough to capture
the full picture. The frame now includes clinicians and their contexts — institutions and
system. This is important and necessary. But the picture still excludes
patients' contexts - their lives beyond the clinical encounter; for the average
American that's all but about one hour per year spent in a healthcare
setting. If health literacy is to achieve its promises of healthcare quality and health equity,
the health literacy lens must widen enough to include the social determinants
the lens is turned inward so that we only see individuals as patients, it looks
as if the problem is a combination of their low literacy and healthcare's
demands and complexities. It looks like health literacy skills are only used or
needed in clinical settings, (and secondarily in epidemics or disasters). It looks like the solution is better
information — more explanation of the
jargon, clearer instructions, more readable medication labels. It looks like taking the right
medication at the right time, managing diabetes, and following discharge
instructions are "routine tasks". It looks like the problem is in patients and the solution is
in clinicians, institutions, and systems.
authors mention that national health goals mandate efforts beyond the walls of
patient institutions to reach people in the community. But the lens has not widened far enough
to see health literacy in everyday life at home and in the community where
health information is interpreted and used or disregarded. The focus is still
too narrow to see what besides reading ability and quality of information determine how and how well individuals
manage the "routine tasks" and episodic challenges of keeping healthy
and caring for others. The
lens is still too clinically focused to see what besides improving information
and its delivery might be worth doing and who besides clinicians might do
applause to all in health literacy for widening the lens to recognize
that systemic problems in healthcare do not belong entirely to the
patient. Now let's open the lens
further to see individuals as more than patients in exam rooms so we can keep
bending the arc of health literacy toward population health and health equity.
information is certainly important and necessary, and also insufficient to
enable patients to benefit from healthcare services.
commitment and shared responsibility on the part of clinicians and institutions
also is welcome and necessary. But we are still missing an essential element
for achieving the national vision of a health literate society. The authors
suggest that healthcare systems form
partnerships to reach people of all ages and backgrounds in the
community as well as in the clinic setting.
The arc of health
literacy now needs to move beyond its focus on improving information to
improving capacity to use information and services for health.
Health disparities, low health literacy begin in poverty
Despite some encouraging news in the just-released annual state rankings for child well-being, Annie E Casey Foundation reports large numbers of children of all racial and ethnic groups are facing economic conditions that can impede long-term success. In 2013 (latest figures) in the world's richest country, 22% of all children live below the poverty line —$24,250 annual income for a family of 4. According to the Economic Policy Institute it takes at least twice that amount to provide basic essentials. It's worse than the average suggests. Here is where health disparities begin: 39% of African American children, 37% of Native American children, 33% of Hispanic children live in poverty. Compared to 14% of white children.
"When very young children experience poverty, particularly if that poverty is deep and persistent, they are at high risk of encountering difficulties later in life - having poorer adolescent health, becoming teen mothers, dropping out of school and facing poor employment outcomes."
Implications for health literacy improvement
These figures jumped out at me since preliminary findings from my current research suggest that basic essentials —- safe housing, adequate food, transportation, health insurance, and child care — are prerequisites for developing maternal health literacy, mothers' ability to use information and services to keep healthy and raise and healthy competent child. It makes sense that no amount of reading skill, understanding of healthcare, or knowledge of preventive practices can make those practices possible when feeding the children necessarily takes priority. National and international policy documents call for improving health literacy in parents to reduce health disparities. Progress in unlikely until we provide health insurance and economic supports to parents of very young children.
Cheers for the Affordable Care Act
Thanks to Obamacare, the rate of insured kids improved 30% leaving 7% or 5.2 million uninsured, most in states that declined to expand Medicaid
Cheers for Alaska
Applause for Alaska governor Bill Walker. He announced last week that he will use executive authority to expand Medicaid. That means nearly 30,000 Alaskans will soon be able obtain insurance. The annual Kids Count Datebook ranks Alaska 31 among the states for child health. The governor's action bodes well for a higher ranking in coming years.
Cheers for Minnesota
They're Number 1 overall in the Kids Count ratings, 2nd in health behind Iowa.
Oh Mississippi! Worst place for kids. Still.
Mississippi ranked 50th overall as it has every year since the rankings were first published in 1990. The state was last in economic well-being, health, and family & community. It ranked 48th in education ahead of New Mexico and Nevada.
See your state rankings here.
"In any situation, a person decides what to do
based on an understanding of facts, issues, options for action, and
consequences." So says PlainLanguage.gov. Oh, would that it were so! This
premise that individuals needing medical care are rational consumers is, in
in healthcare is not like buying a car.
When it comes to healthcare decisions, understanding the
medical facts and treatment options and consequences often requires an advanced
degree, specialized vocabulary, internet access and research skills. The
"facts" — like the
definition of health literacy — are likely to
differ by who you ask. Well-established medical facts change along with rapidly
developing knowledge and technology.
The price of treatments, and whether and how much insurance will cover,
is usually unknown by both service provider and consumer until after the
fact. The medical, personal and
social consequences of a disease or treatment option are in most cases
predictable only by what seems to have happened to other people in other
families and circumstances. So if
it were true that we humans base our health and medical decisions and actions
on objective rational logic, few such decisions could be made.
healthcare, where issues and consequences are intensely personal, often
embarrassing, frightening, financially devastating, and far reaching,
decision-making and behaviors are more often based on a mix of emotions,
insurance status, immigration status, cultural or religious beliefs, trust or mistrust of providers or
government, practical considerations like availability of transportation…the
list could go on and on.
Knowing is not enough; we must apply. Willing is not
enough; we must do. ~Goethe This flawed view of individuals as rational consumers of
health services separate from the context of their everyday lives supports
another convenient but equally flawed notion: If people just had more or better
information, they would make appropriate decisions and adopt health promoting
behaviors. PlainLanguage.gov presents this as
the theoretical foundation for the Ask Me Three[questions] campaign. That may be a good conversation starter.
Still, seeing patients as rational consumers who ought to
lead discussions about their care places the "health literacy
problem" (high costs, disparate outcomes, inefficiencies and inequities)
squarely on the patient. If we are to achieve the national vision of a health literate society, rather
than expecting individuals in need of healthcare services to learn medical
terminology and disease information, healthcare professionals must learn to
communicate effectively with people who have not gone to medical school. Rather
than insisting that patients re-arrange their lives, become researchers and
care managers, and endure all manner of inconvenience to comply with overly
complex treatment regimens, healthcare delivery professionals must adapt
treatments to the realities of everyday life.
Howard K. Koh, Donald M. Berwick, Carolyn M. Clancy,
Cynthia Baur, Cindy Brach, Linda M. Harris and Eileen G. Zerhusen. New Federal
Policy Initiatives To Boost Health Literacy Can Help The Nation Move Beyond The
Cycle Of Costly 'Crisis Care' Health Affairs 31, no.2
(2012):434-443(published online January 18, 2012; 10.1377/hlthaff.2011.1169)
In a recent meeting to discuss online searching for health
information, Rachel was introduced as a UX writer for Google. Mystified, I
googled her job title. Turns out UX is short for User Experience. A UX writer
is first an advocate for the user of information. Rachel does not think
about educating readers who need to process and understand information
and gain knowledge. Rather, she
"creates useful, meaningful text that helps users complete the task
Imagine how information from health care organizations would be
different if producers and reviewers aimed not to educate patients with low
literacy, but rather to "simplify and beautify the user experience"
of obtaining treatment, using medications, or navigating facilities. Imagine if we wrote not for "low literate
patients", but for an information user assumed to be competent, although
unfamiliar with the content and context.
What if we regularly used empathy along with logic and hard data to
inform content choices? What if we worked closely with teammates from a variety
Rachel writes about Google software products. Elsewhere, her
position might be titled technical writer. What differentiates her from technical writers, and most
health information producers, is her intent to improve the users experience,
instead of intent to improve the information. Another essential differentiating factor is that Rachel the
UX writer assumes users of the info she produces will have different levels of
proficiency, background knowledge, and experience. She does not require them to
learn a new vocabulary. She does not demand reforms to public education to
increase computer literacy so that people can benefit from her products and
services. Rather she enables them
to use her information with the skills they have.
A UX mindset would transform health information and the process
of health education.
A UX Writer's job
description would be a good starting place to describe a health literacy
specialist or health educator position. Find one here.
producers should be less concerned about healthcare consumers’ lack of literacy skills and more
concerned that we are all “limited-capacity
"In any situation, a person decides
what to do based on under-
standing of facts, issues, options
for action, and consequences.”
This statement from an article titled “Improving
Health Literacy” at PlainLanguage.gov
is bound to set information providers and health literacy promoters down a dead
end. It describes health decisions that fit the process for effective decision
making taught in graduate classes Dartmouth [http://www.umassd.edu/fycm/decisionmaking/process/] and
multiple models of how health decisions ought to be made. We hope and
trust that healthcare professionals use this conscious, deliberative,
analytical, linear, reasoned process for treatment decisions. Consumers do not.
decisions are based on emotion
are much more likely to use what experts in decision-making processes call an “experimental” approach that is intuitive,
automatic, associative and driven by emotions. It is feelings that make meaning from information and
motivate actions. Because we can only use a limited amount of information, we
consumers automatically search for info that warrants our attention and info we
can disregard. Health decisions typically are complex and require complex
information on unfamiliar topics,
using unfamiliar terms and concepts. More info requires more time and energy and often yields
more uncertainty and competing messages. Even otherwise information-hungry
consumers may limit information seeking and almost certainly disregard available
information that is hard to use when physically, mentally, spiritually and
financial stressed by illness. The value of plain language information in a
simple form is that it makes information easier to use so that consumers do not
have to use short cuts.
Plain language information is necessary
but insufficient to improve health literacy. It needs to be formulated to
make decision-making, rather than reading less cognitively and emotionally
demanding. It needs to come with direct support to help people process the info
based on their specific needs and the everyday home context in which they are
expected transform decisions into actions and outcomes.
Consumers in Healthcare:
The burden of choice. (2005). Shaller, D. California Healthcare Foundation,
Oakland. Online at http://www.chcf.org/~/media/MEDIA%20LIBRARY%20Files/PDF/C/PDF%20ConsumersInHealthCareBurdenChoice.pdf
The Adaptive Decision
Maker. John W. Payne, James R. Bettman and Eric J. Johnson, Cambridge:
Cambridge University Press, 1993,307 pp. ISBN 0 521 41505 5 (hc), ISBN 0 521
42526 3 (pb)
saw it again: In fact, 9 out of
10 US adults do not have the skills to manage their health (from a newsletter
whose author shall remain unnamed)
Last week, I saw that
figure, stated as a related but different known fact, on the NYU student health
website: Nearly 9 of 10 adults
have difficulty using the everyday health information that is routinely
available in our healthcare facilities, retail outlets, media, and communities
sure who our
refers to). That same quote is found in the CDC report titled The State of
Aging and Health in America 2013
Here’s another version made somewhat more accurate by qualifiers: Only
12 percent of adults have Proficient health literacy, according to the National
Assessment of Adult Literacy. In other words, nearly 9 out of 10 adults may
lack the skills needed to manage their health and prevent disease.
The source of this oft quoted and variously interpreted
statement is data from the 2003 National Assessment of Adult Literacy. That was
a lengthy pencil and paper literacy test taken by 19,000 US adults 12 years
ago. It included “health tasks”, hypothetical situations thought to represent
common literacy activities related to health.
Use your critical
statement is not a fact.
It is a national-level estimate
extrapolated from a population sample. Research, and especially literacy
testing, does not produce fact, only likelihood; in this case, at the national
level. The statement is meaningless in discussion of individuals.
test has been used once. Its validity is unknown.
literacy tasks” in the test are common only to insured, experienced patients.
example: A Proficient rating means the person can use a table to calculate
an employee’s share of health insurance costs for a year. This is nonsense to a person who has never qualified
for employer-based coverage.
Basic means a person cannot read a short set of instructions and identify what
is permissible to drink before a medical test. More nonsense for a person who has never had a medical test.
information was produced to publicize a problem, spur action and advocate for
research funding. That may explain why reports refer to “only 12 % are
Proficient” and then round down to 10% and delete nearly to state that 9
out of 10 are not proficient; and suggest that individuals need to score at the
Proficient level to manage their health, or use everyday health information, or
prevent disease. A more accurate,
but less motivating report might have said, “Only 14% of US adults scored Below Basic in heath literacy.
They are primarily impoverished, socially disadvantaged adults who attended low
quality schools and are excluded from the healthcare system.”
is rarely reported that “the majority of US adults” (53%) scored at the
Intermediate level, and another 22% (“[nearly] 1 in 4”) demonstrated Basic
health literacy. If it is
true, as suggested, that a Proficient heath literacy score translates to
proficient management of health, disease prevention, and “understanding basic
heath information to make appropriate decisions”; and if it’s also true an
Intermediate or Basic score translates to incompetence, that’s an incrimination
of a healthcare system that benefits only 1 out 10 it intends to serve.
rarely reported that 30% of college graduates scored at the Proficient level,
compared to 3% of high school graduates and 1% of non-graduates. That figure
suggests making higher education accessible to all adults as a matter of health
policy and healthcare cost containment. It also suggests you need a college
degree to benefit from “the best healthcare system in the world”
It is imperative to
move away from this questionable, disempowering, self-defeating, system-centric
oft-repeated extrapolation that 9 out of 10 US adults do not have the skills to
manage their health. Healthcare would benefit by using theories of health
literacy as an asset and a pragmatic intervention to design health services
that benefit people with the skills they have instead of lamenting that people
just are not smart enough to use health information and services. As long as we
contend that what we need in order to have quality, equitable, affordable
healthcare is a smarter patient; we’re spinning our wheels.
My grandson was up to bat in his first little league game.
I shouted enthusiastically from the stands, “Eye on the ball,
Rhett. Eye on the ball!” He
stepped out of the box, lowered the bat, and replied in a low bored voice with all the power of a
stage whisper, “ I
already know that. You don’t need to tell me.” Now I know how he felt.
A headline flashed on my screen this morning “Information
materials… too complex for patients".
We know that. For sure. For certain. No doubt. No question. A PubMed search on “readability
of patient information” brings
up 2149 published articles; 45 already in
2015, one every work day.
The continued focus on patients’ inability
to understand information from healthcare providers and insurers is not just
wasteful, it’s harmful in several ways.
Readability is the low hanging fruit of health literacy
research. It’s picked. There are so many urgent unanswered questions to investigate. Funders and editors, please require more forward thinking, and more
Readability studies are about patients and their deficits. On average, Americans spend about 1
hour per year as a patient in a clinical setting. The near exclusive focus on
patients’ in health literacy research excludes most of us, most of the
time. It defines individuals as their disease. It suggests a person only needs
health literacy when seeking or obtaining medical care. If research refocused on what promotes a person’s
or community’s ability to use information and services for health, risk
would less often progress to need, and fewer of us would be patients. We would
discover interventions to complement information-improvement initiatives.
Focus on “low literate patients’” deficits is disempowering, disrespectful,
and self-defeating. It positions
patients as incapable of doing what is required to recover and cope. It breeds
unnecessary dependence on professionals. It positions patients as victims of
disease, and providers as their rescuers — both
untenable positions in a system that strives to be patient centered and
prevention focused and wants patients to self-manage disease and be partners in
We need no more
studies to document the problem. We need to remove barriers, and develop
skills, particularly interactive and reflective skills which are typically
categorized as advanced health literacy skills and not included in health
literacy studies. We need to
understand the contexts in which people strive to act on information to keep
healthy, live well with disease, and raise heathy competent children. We need recognize and research health
literacy beyond the clinical encounter in everyday life where information is understood
and acted on - or not.
Let’s stop analyzing how bad
health-related information is, put into practice what we know about making it
clear and actionable, and move on
to figure out what, besides plain language, empowers people translate information
into health promoting actions and outcomes.
I’m proud of my city. We are catching up
with the rest of the world.
Yesterday Mayor Ed Murray announced Seattle will provide paid
parental leave for City employees.
All parents — foster parents, adoptive parents,
mothers and fathers— will have the option to take four
weeks off —with pay— to bond with a new child. The mayor is encouraging other
employers in the state to offer similar benefits.
This should not be the surprise, the bold move, the
breakthrough that it is.
The US is the only developed country on the planet that does not
give new parents paid time off to support attachment and bonding and infant
brain development, and to put their newborns on a positive health trajectory.
President Obama announced a similar new
policy to provide six weeks paid parental leave to federal workers in
his State of the Union address.
A step toward gender equity in the workplace
I’m especially glad the paid leave
policy will apply to fathers as well as mothers. That presents child care as a
shared responsibility. It puts to rest arguments and unfair choices that have plagued so many women’s
career…You are on the mommy track, so you can’t
be on the partnership track. The paid leave policy protects mothers’ earning
potential, avoids unfair expectations and burdens and removes that awful choice
between career and family.
Most of all, this investment in parents shows we are a society
that values its children, including adopted children and those in foster care.
It shows respect for the role of fathers in raising children, and the role of
mothers in the workforce. It
acknowledges the contributions of
foster parents — special people who can love other
people’s children as their own, and encourages
foster parenting. Thank you Mr Mayor and Mr President for leadership toward a
stronger city, region and society.
is teen dating abuse awareness month.
Throughout the month of February, teens
and organizations across the country have been working together to raise
awareness about teen dating violence.
As a dating abuse prevention educator February is my busiest month
(which is why it has taken me so long to write this blog). Every week I visit
the schools in my community to discuss dating violence, healthy relationships
and how to recognize warning signs. I speak with students from 7
grade all the way through college about their experiences. I am proud of what I
do and I am grateful to work in a community that considers these issues
important enough to discuss with our children all throughout they year. I wish
I could say the same for the community I live in. Not every district or county recognizes the importance of
discussing healthy relationships with adolescence, which is shocking
considering the statistics (see below). I have tried on more than one occasion
to bring presentations similar to the ones I do in other communities to my
son’s school to no avail. The
question is why aren’t some schools or some communities talking about dating
The simple answer is, it is not an easy
subject to talk about. We are taught to ignore or to stay quiet when we see
signs of abuse. We are not encouraged to talk about abusive behaviors in
relationships. If you are parents, it's even more challenging to open a
conversation with your child about relationships. Where do you begin, and at
It is important to recognize that dating abuse affects
everyone. It knows no boundaries and crosses all barriers. It can and does
happen to anyone, at any time at any age all around the world. The repercussions
are far-reaching and impossible to ignore. According to loveisrespect.org violent relationships in
adolescence can have serious ramifications by putting the victims at higher
risk for substance abuse, eating disorders, risky sexual behavior and further
domestic violence. It affects
children, their families, their schools and their communities.
It can be difficult to talk to your children or a young
person in your life about relationships, dating and especially sex but if you
don’t, who will? We must talk to our youth about how to recognize warning
signs, what a healthy relationship looks like and where to get help. Talk to them and listen to what they
have to say. If you don’t know where to begin, I have listed resources for you
below as well as some statistics.
deserves a healthy relationship. Not everyone knows what that looks like
(especially when they are looking to the media and culture for examples but
that is an entirely separate future blog post) so it is up to us to begin the
conversation. Reach out to your local agencies; see if they can bring someone
in to the schools to reinforce what you are teaching them at home. We can raise
awareness, we can prevent violence in relationships and we can do that one talk
at a time.
Did you know:
1 in 3 teens in the U.S. is the victim of physical, sexual, emotional,
or verbal abuse by a dating partner, a figure that far exceeds other types of
Girls and young women between the ages of 16 and 24 experience the
highest rate of intimate partner violence (almost triple the national average).
Violent relationships in adolescence can have serious ramifications by
putting victims at higher risk for substance abuse, eating disorders, risky
sexual behaviors, and further domestic violence.
Eighty one percent of parents believe teen-dating violence is not an
issue or admit they don’t know if it’s an issue.
One in three adolescents in the U.S. is a victim of physical, sexual,
emotional or verbal abuse from a dating partner, a figure that far exceeds
rates of other types of youth violence.
One in 10 high school students has been purposefully hit, slapped or
physically hurt by a boyfriend or girlfriend.
One quarter of high school girls have been victims of physical or
Approximately 70% of college students say they have been sexually coerced.
There are many organizations doing incredible work focusing
on relationship violence awareness and prevention. These are a few of my
US residents speak at least 329 languages. In some US cities less
than 60% of the population speaks English. About 32 million of us speak a
language other than English at home. If your service population is not diverse
now, it will be soon. Pew Research
projects the US Spanish speaking population will triple by 2050, and the Asian population will double. Success
in improving the health of ethnic populations will substantially influence the
future health of America as a whole.
Healthcare organizations have been working to develop their
capacity to address language barriers and cultural differences, but it’s
hard to make progress when the challenge is increasing along with the
complexity of treatments and healthcare delivery and financing systems. Non-
English speakers still face substantial communication barriers at almost every
level of the health care system.
show that communication barriers have a negative impact on health, discourage
use of preventive services, and increase costs of treatment through unnecessary
testing, delayed diagnosis, extended treatment times, and misinterpreted
instructions. Without information that they can understand and use in their
everyday lives, patients cannot engage in self-care or self-management. In
short, they cannot take responsibility for their health and be partners in treatment,
as effective care now requires.
In most cases, provider
organizations and insurers have the means to overcome language barriers. But
current practice in most communities still reflects an assumption that it is
the patients' obligation to make themselves understood, to ask appropriate
questions and to correctly interpret and comply with instructions. In most
instances, this assumption is wrong as a matter of law. Federal and state civil
rights laws and Medicaid regulations require access to linguistically
appropriate care. These laws are the basis for accreditation standards that
require providers and insurers to position themselves for our multicultural future.
Studies show that print
materials, particularly in combination with brief counseling, can increase
recall, compliance, and behavior changes; and reduce consultations regarding discomforts
that could be self-managed. Health information is increasingly available and
accessed online, through mobile devices and virtual patient educators. Still a
clear message from research participants
is that written information should always be available, even in the
presence of multiple other media.
While they are not a total
solution, CLAMs remain the necessary foundation for a comprehensive
communication effort, and an obvious starting place to promote health literacy.
Organizations serving diverse populations will need to hone a process to
develop and test English language materials, and to adapt essential proven
materials for non-English speakers.
More on that next time. Stay tuned.