Beginnings Guides Blog
Health Literacy: An economic issue
In the US, literacy has long been addressed as an economic issue, a pre-requisite for a
productive workforce in a competitive global economy. Some scholars argue that political campaigns to address adult
low literacy have been undertaken repeatedly in the US and elsewhere to explain
or distract attention from economic downturns, most recently in 1991 by GH Bush, That campaign produced the
the 1992 National Adult Literacy Survey. Results led academic medical
researchers to discover a glacier in their backyard — the
fact that few Americans understand information from healthcare organizations, doctors, pharmacists, and health
insurers. The first health literacy studies in the medical literature came out
literacy as an explanation for national economic woes extended to patients' low
literacy as an explanation for low quality, high costs and inequities in
healthcare. Health literacy
was understood as low functional literacy (reading and numeracy) in a clinical
setting. The thinking went like this: if patients could read better, they would
better understand their disease and treatment instructions, and so comply.
Outcomes would improve and we would avoid unnecessary expenses like ED
visits, re-testing and
re-admissions. That thinking led to much needed information-improvement
High demands of complex systems increase negative impact of
Recent policy documents acknowledge patients' ability to
understand and use information for health is determined not only by their
personal skills (or lack of them) but also by the demands and complexities of
the healthcare system  . That recognition is leading to initiatives to redesign
services and remove barriers to access and participation.
Health Literacy: A health issue linked to individual &
In a new leap forward in thinking about HL, the National Academy
of Medicine (formerly IOM) has released a discussion paper suggesting that a
person's HL is intrinsically linked to an individual’s and a community’s
socio- economic context, and is a powerful mediator of the social determinants
of health . This suggests
health literacy is strongly
influenced by the demands and
complexities of the home and social context. It makes HL a public health issue,
a pre-requisite for an equitable health system, and key to achieving health equities. At a recent IOM workshop,
experts discussed the role of the social determinants of health in health
literacy and the need to move health literacy intervention into the community
. (Can you hear me applauding?)
Healthcare organizations should lead adult & family literacy efforts
It is becoming clear that literacy is not just an economic
issue, but a matter of personal and public health. There is no getting around
the fact that health and literacy are inextricably linked. More literacy — more health, and more health
literacy. In communities where low
literacy is the norm, where high school graduation rates are low and schools
are poorly funded —these are the same communities with
high incidence of asthma, diabetes, cancers—, healthcare
organizations should establish, house and
and actively support adult literacy and family literacy programs. High
returns can be expected from a relatively low investment. Such a program can
make good use of facilities that typically are vacant in the evenings and on
weekends; and provide good marketing opportunities while building the community's
capacity for health and making participants more prudent healthcare consumers.
A healthcare-based literacy
program that incorporates health
education and health literacy improvement can make everything easier and more
efficient for the participants and for the organization that provides their
(1994). Literacy as social exchange: Intersections of class, gender, and
NY: State University of NY Press.
Logan, R. (2015).
Health literacy research’s growth, challenges and
frontiers in C. Arnott-Smith and A. Keselman (Eds.). Crucial conversations:
Meeting health information needs outside of healthcare. New York: Chandos,
Health Literacy: A Necessary Element for
Achieving Health Equity. Robert A.
Logan, Winston F. Wong, Michael Villaire; Gem Daus,Terri Ann Parnell,
Earnestine Willis & Michael K. Paasche-Orlow, Full text at:
Health Literacy: Past, Present, and Future:
Workshop Summary. Joe Alper, Rapporteur .
This PDF is available from The National Academies Press at
My Dad was in the hospital this week. I found this laminated sheet on the counter at the nurses station.
Patients, family and visitors with LEP —limited English proficiency— or a problem speaking could just point
to a picture to indicate what they need. A great simple idea that could save time and stress for all, including
nurses who get to answer all those questions and requests. I’m disappointed that in this rural community
with a large Spanish-speaking population all the people pictured are white, well and handsome. The well-coifed
woman eating is wearing a dress and pearls; she is clearly not from around here. And all the words are in English.
If the clip art more closely reflected the community and the text was bilingual you could hear me applauding.
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
A summary of the workshop
proceedings was released this month. Download a summary
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:
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
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
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,
than reducing the person to a medical problem and assuming that s/he has
failed to comply with the medication
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
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
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
provider to achieve patient satisfaction.
> It shifts
thinking and conversation from what patient and clinician do not want — disease
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
who live in poverty and face daily discrimination, are rarely asked questions
and may be trained not
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
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
McGinnis, Pamela Williams-Russo and James R. Knickman The Case For More Active
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
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
." 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
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)
I share this
story with the permission of it’s
author, Michael Joe Harrison. Michael was on my
first date with Larry, now my
husband of 37 years. Larry was Michael’s volunteer big brother
through Big Brothers Big Sisters
of Virginia. He was 15, a long-haired foul-mouthed certified
Delinquent. Long story short, we all got out of VA; Larry & I, my daughter Lisa and
Michael became a family
Seattle. Michael quickly adopted the role of loyal protective big
brother. At 18 he went back East, reunited with
his sister, finished school, married, established
a business, raised a family,
and became the one his relatives turned to when their kids got into
When Lisa got married, we offered her any gift she could imagine - she wanted
in her wedding. Now a grandfather, musician, business owner in Georgia,
and still very much part
of our family,
Michael reflects on fatherhood in this from his Facebook page.
Just like my
Roughly 14 years
ago, most all the trees in the front yard I planted. Each one planted
a loved one. Specifically today, would like to talk about the ones
planted for my children, Jennifer
Manor, Chris Bradley and Kim Harrison.
When I planted
these trees, they were young. I feed and watered them, pampered them hoping
they would grow tall and strong. Just like my children.
started to grow, there roots grew deep to provide a strong foundation to stand
took a little time but slowly they anchored themselves and could hold
their own. Just like my children.
spread, helped provide shade on hot days. Their branches provided shelter and
families grew from their branches. Just like my children.
branches broke. I would worry that if too many broke, I would lose them. New
grew and the trees were more resilient, wiser if you will. Just like
Each tree is
different. None are the same. This means they grew and matured at different
Their leafs and blooms grew and fell at different time. Each one is
unique. Just like my children.
These trees have
weathered many seasons. They would grow new leaves every spring. Survived the
bitter cold and survived life’s stormy weather. Just like my children.
We all moved
away. I could no longer pamper them. They had to stand on their own and they
They are strong, healthy and their leaves provide air which breath life to
all. Just like my children.
Which one is my
favorite? Well I can’t answer that. Each one has their history. Each one was
with love equally. Along the journey, each one has special memories and
stories. Just like my children.
To say I am proud
of these trees, I am. Actually I love these trees. Love comes in many forms. It’s
been a wonderful experience to watch these trees to grow and mature. So yes I
do love them.
Just like my children.
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
is first an advocate for the user of information. Rachel does not think
readers who need to process and understand information
and gain knowledge. Rather, she
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
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
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
bound to set information providers and health literacy
promoters down a dead end. It describes
decisions ought to be made. We hope and
trust that healthcare professionals use this conscious,
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
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
make decision-making, rather than reading less cognitively and emotionally
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.
Healthcare: The burden of choice. (2005). Shaller,
D. California Healthcare
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:
University Press, 1993,307 pp. ISBN 0 521 41505 5 (hc), ISBN 0 521
42526 3 (pb)
In Florida, if someone scares you
to death you can legally shoot them to death with your BLEEP. But your
family doctor or
pediatrician or health worker cannot legally ask you if a BLEEP is kept in your
house or how
it is stored.
Apparently even thinking about the
risk of unsecured BLEEPs to their children’s and
right to keep BLEEPs anywhere and any way
they want. This BLEEP has been
since 2011. (The part that made asking about BLEEPs a felony with
jail time and a $5 Million fine did not pass).
Physicians groups challenged the
law. It was upheld as constitutional in Florida since BLEEP ownership and
is a private matter unrelated to medical care.
BLEEPs and tobacco are the only
products on the market that when used correctly kill people; BLEEPS kill lots
of people, often children, in a seconds.
So BLEEPS can’t be a private matter.
Safety Checklist for a Crawler:
BLEEPS are unrelated to medical
care until a child -or some one
else- or the owner- is injured by the patients’ BLEEPs. Then
taxpayers fund emergency response and
medical care for totally
preventable horrific injury or death, and related
increased insurance premiums, and lost contributions to
And we live in fear…. Oh, I see, if you live in fear - get a BLEEP.
Texas legislature entertained a similar gag rule this month.
Death in the United States:
A Call to Action From 8 Health Professional Organizations and the American Bar Association.
Ann Intern Med. 2015 Feb 24. doi:
10.7326/M15-0337. [Epub ahead of print]
Ferrris S. Children’s Defense Fund report on Childs’ BLEEP deaths, new BLEEP laws Data analysis: More
preschool kids dead from BLEEPfire than
police. May 19, 2014
Walters, E. Bill Would Prohibit
Doctors From Asking About BLEEPs. The Texas Tribune March 18, 2015
Pitts, L. Republican list of things you cannot say.
Seattle Times March 19, 2015