Center for Health Literacy Promotion Blog
Europe can now see itself as a casualty
of the self-proclaimed Islamic state. Terrorized families are being fired at
them like ammunition. Europeans
are suffering the personal, social, economic, political, spiritual, religious,
moral, financial, public health and healthcare stresses of finding hundreds of
thousands of individuals and families on their door steps. The situation would be challenging even
if these were happy families on holiday.
But the arrivals are in crisis, terrorized, grieving, sick, hungry
destitute and desperate.— and
they are not going home. To
further complicate matters, likely lurking among them are smugglers, criminals,
terrorists, and recruiters of new terrorists ready to take advantage of
disruption and vulnerability.
Europe's health systems will be hard
especially mental health services. The children have been exposed
daily to ACEs- Adverse Childhood Experiences
- that will have lifelong
effects. Adults have lost everything that tells them who they are and how to
be- their countries, towns, schools, places of worship, neighbors, friends,
family, jobs, credentials, status, their whole range of resources and
solutions. Their coping capacity was likely used up before they arrived. The
conditions for recovery — safety,
quiet, comfort, privacy — do
not exist. Then there are the language barriers and cultural and religious
What would happen if the 250, 000
refugees and immigrants who flooded into Greece this year arrived instead on
the shores of Alabama? The state is
roughly the same size as Greece, but has half the population. Like Greece, Alabama has high rates of
poverty and xenophobia, and limited healthcare resources. Would we see the
famous southern hospitality, or a wall?
How does a health literate organization,
community, or state respond to such a barrage of challenges?
Can we even think about health
literacy in such a crisis. Should we?
More than ever. As a matter of social justice. As a
matter of public health. My research suggests priority needs to be on basic
essentials; because adequate housing and food and are pre-requisite to learning
a new language and recovering enough from trauma and ordeal to think about obtaining and using information
and services to regain health. Next,
scale up adult and family literacy programs that integrate health
education. Hospitals should lead
this effort; it will make everything else they do easier, more efficient and
effective. Scale up training of
health educators, medical translators, public health nurses. Scale up cultural
competence training for all health and social services providers.
Looking through a health literacy lens at Europe's
responses to the refugee crisis, we might learn some strategies for healthcare
systems facing new levels of diversity and xenophobia, socio-economic and
health disparities, and unprecedented numbers of poor, inexperienced patients with language barriers and a
backlog of medical needs. If we can understand and act on what we learn, we
could get closer to our vision of a health literate society in which no one
dies for lack of information and the support to use it.
This question was
raised by Winston Wong, Director of Disparities Improvement and
Quality Initiatives at Kaiser
Permanente, during the Institute of Medicine's recent workshop,
Health Literacy: Past, Present and Future.
The workshop marked 10 years
since IOM released the landmark
report Health Literacy: A Prescription to End Confusion.
A summary of the workshop
proceedings was released this month. Download a summary
of the workshop
free from National Academy of Sciences. Definitely
worth the read.
Here's the part
that made me stop and applaud
In a discussion about health literacy
and its role in achieving equity, Wong
recounted a conversation among health plan leaders on patients'
non-medical needs (social determinants of health), that led to the question: What
should be the core conversation between a doctor and an individual s/he sees
for 15 minutes per year? “One interesting proposition is that we should start the
discussion with every person we come in contact with by asking 'what does a
good day mean to you,’"
Wong said, "because that’s really a much more important question
than ‘what hurts’ or ‘have you been
taking your medicine today.’”
Why is this
question more important than typical problem-focused inquiries?
Wong said it
reflects the fact that medicine can help with some problems, but what ultimately
makes for a good day for someone is determined by a constellation of actors
that foster good health. The question recognizes that on average Americans
spend about one hour per year in a clinical setting; the healthcare
professional is just one actors; s/he marshals resources that account for about
10% of health. The other actors
are the people the individual is with the other 8764.81 hours per year. The
power to create health, and to live well with disease, is with the patient.
What is a good day
like for you? addresses the person and
his/her "real life",
instead of focusing narrowly on the patients' disease and
treatment. It suggests the patient's selfcare is achieving some good days,
rather than reducing the person to a medical problem and assuming that s/he has
failed to comply with the medication regimen.
What is a
good day like for you? is a good
> It cannot be
answered yes or no. It requires the respondent to think
critically about what matters to them, to reflect on what they want from
medical care and how they will know they got it. It leads to conversation about
what the person is able and willing to do now to achieve more good days.
> The response
serves the patient, rather than simply informing the clinician.
> The response
enables the clinician to hear and adopt the patient's words, so the patient is
not expected to learn medical terminology, and the clinician is not expected to
check a glossary of simplified terms.
> The question allows the patient to
figure out and articulate what they want and need, making it easier for the
provider to achieve patient satisfaction.
> It shifts
thinking and conversation from what patient and clinician do not want — disease
and suffering— and
how to get rid of it, to what they
do want —good days— and how to get more of them.
The hard part is
waiting for the response
Patients are not accustomed to being
asked reflective questions, especially by clinicians. Many, especially those
who live in poverty and face daily discrimination, are rarely asked questions
and may be trained not to think.
The reflexive first response is likely to be "I don't
know". They need a way to
think about it. Try again; Can you remember a good day or a good
moment? Then the hard part:
wait. Let them be the one to fill
the silence. Ask follow up
questions to help the patient clarify what s/he wants, and what will tell her
that she got it; what has worked before and what is needed to achieve more good
days. An effective conversation will end with the patient articulating the
action s/he will take and the clinician offering supportive information and
More on reflective
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.