Center for Health Literacy Promotion Blog
It started as liability protection for prenatal care providers
I started developing the Pregnancy Guide in 1988. At the time
over a third of obstetricians had been sued for malpractice before they
finished residency. Many family physicians had stopped delivering babies as the
cost of malpractice insurance became prohibitive. Around this time the Million
Dollar Baby was introduced in the literature - that was the baby whose medical
bills approached a million dollars before she left the hospital. One “bad
baby” could wipe out an employer’s entire health
The thinking at the time was to tell pregnant women everything
there is to know about pregnancy, especially things that could go wrong, in
order to avoid lawsuits. If mothers were given information, they would be
informed, or uninformed by choice and therefore liable for untoward outcomes.
And the research indicated that families who felt informed were more satisfied
with their care and less likely to sue.
Mountains of printed material, little actionable,
I gave up on my long search for materials that I could recommend
to prenatal care providers trying to respond to mandates from their
professional societies and malpractice insurers to inform mothers on a long
list of topics related to birth outcomes. I had found and reviewed
mountains of pregnancy
information. There were thick books that seemed intent on giving mothers facts
and scaring them into compliance. There were mounds of brochures, all on single
topics. These answered a specific question, and so were useful only to those
who knew what to ask and had sufficient reading skill to make meaning from the
jargon and medical facts.
Research defines key health behavior messages
In 1989 the landmark document Caring for Our Future: The
Content of Prenatal Care was published. It presented the first
comprehensive guidelines for what defines a minimal quality prenatal care
service. It called for more visits in early pregnancy to deliver the health
promotion content of prenatal care. It detailed health behavior messages to be
discussed at each visit. Subsequently, research demonstrated direct links
between the recommended health behavior messages and outcomes, particularly low
Health promotion content of prenatal care rarely delivered
But providers said
it is just not feasible to keep track of each woman’s knowledge and
address their health behaviors and still meet production requirements. They
were -are- not trained to support behavior change. The typical prenatal visit
included about 7 minutes with the doctor and focused on screening and
intervention. The health promotion content of care was addressed by
recommendations to attend childbirth classes, which occurred too late in
pregnancy to have any impact on outcomes and were attended primarily by
Beginnings Pregnancy Guide introduces staged learning,
conversations for health
And so in late 1989 I published Beginnings: A Practical Guide
through Your Pregnancy. It was designed to protect obstetricians from liability,
and at the same time to serve mothers by providing easy-to-read, plain language
actionable information on what women across cultures want to know about
pregnancy. It put the health promotion content of prenatal care into text that
reads like the encouraging conversations a caring, articulate, culturally
competent obstetrician who was up on the research would have with each pregnant
woman and her partner, if time and economics allowed. I followed Pulitzer’s
mandate to provide information that is “brief so they will read it, clear so
they will appreciate it, picturesque so they will remember it, and accurate so
they will be guided by its light.”
Information alone is rarely enough to influence health
I soon learned that simple information giving is rarely enough to
influence behavior. People need assistance to make personal meaning from
information and act on it in context. Information-givers need training -and
time- to use materials effectively for teaching and learning. The OBs said,
rightly, I think, that health education is not their job. And so the health
promotion content of prenatal care fell to home visitors serving Medicaid
populations, and health plans providing online and print information to the
privately insured. (About 2-4% of mothers were attended by midwives who embrace
pregnancy as a high state of health and focus on the health promotion aspects
Designed for mothers, and health literacy promotion
From 1990 on, Beginnings Pregnancy Guide has been designed
for mothers, rather than providers. Since 1993 when the first article on health
literacy appeared in the medical literature, it has been a laboratory for
materials that promote health literacy.
Who uses Beginnings Guides
Beginnings Pregnancy Guide is now most frequently used by
home visitors, parent educators, family support workers and case managers to
promote maternal child health and maternal health literacy. There is training,
a users manual, and an evidence base. It is earns high
satisfaction ratings from both college educated and under educated mothers and
The new updated 9th! edition is just off the press. In English
and Spanish. Take a look.
“Health literate health care organizations design health care
facilities with features that help people find their way.”
My Dad -he’s
86 - was admitted to the hospital last Thursday with chest pains. My mother
and sister sat with him that night. He woke often, agitated and not knowing
where he was, determined to get
out of bed. Friday morning, mom was exhausted, so I took over the vigil. Dad
had another difficult night that he will not remember, but I will. On one of
his many awakenings, he had removed his gown and ripped off all the electrodes
in the seconds it took me to get to his side. It was a total role reversal with
me telling my father he had to stay in bed.
About 4AM, he finally settled into a
sound sleep. At 5AM, I let the nurses know i was going to get some air and
would be back shortly. I exited
the main entrance, breathed deeply, walked across the icy parking lot and back
to the door. It was locked.
Seeking the Emergency entrance
A sign board visible only from
outside read “Exit Only -
Enter at Emergency Department”. But there was no indication where the
Emergency entrance is located. I walked more than a block in one direction
until I reached what looked like the the maintenance buildings, thinking, “It can’t be this far; there must be lights.” I retraced my
steps back to the main entrance starting to feel the below-freezing temperature
and to worry about my safety. I
proceeded in the other direction.
I found another entrance, with the same sign. I kept going and found a third entrance, with the same sign.
This one had an arrow, but it pointed into a dark space between buildings - no
ER in sight.
The locked doors seemed an obvious
and important security measure.
But my security was at risk wandering
around in the dark and cold. I could easily read and understand the sign. But
it was not an aid to navigation. I
decided to wait it out in my car, but the keys were in the building.
Lucky for me, before long, I encountered two nurses coming in for early morning
surgeries. They had a card key and let me in the third door. when I promised
not to tell. They said, “The ER is waaaay down that way”. One of them started to lead
me there. It took a bit to explain I did not want to go there, I only needed to
get in the building.
Easy to be more health literate
This hospital would easily become a
more health literate organization by improving its signage to include ‘navigation assistance”. And by making the Exit only”
signs visible from inside so they can be seen on the way out. Then the nurses would not have had to take surgery-prep time
to help me. And there would be
less risk of incidents that no one wants to happen. As a former hospital public
relations officer, I know all sorts of untoward events might have occurred out
there in the parking lot.
This hospital would score well on
most of the Ten Attributes. Perhaps
this is a case of assuming that “everyone
knows” where the Emergency
entrance is, and that all other
doors are locked during certain hours.
But everyone does not know. And the ED needs to be easy to find. I
checked again in daylight and still saw no signs for the ED, except from the
Pretend you are from Mars, and
go look at your signage. Can you see it where you might need it.
Does it tell you how to get where you need to be?
PS Dad is home, recovering well. I am grateful for good care.
CORRECTION: The discussion paper posted here yesterday- Health Literacy as an Essential
Component to Achieving Excellent Patient Outcomes - was not commissioned by the IOM as I
stated.. It was announced in the IOM newsletter. As indicated in the note
accompanying the paper “The views expressed in discussion
papers are those of the authors and not necessarily of the authors’ organizations or
of the IOM. Discussion papers are intended to help inform and stimulate
discussion. They have not been subjected to the review procedures of the IOM
and are not reports of the IOM or of the National Research Council.”
This discussion paper commissioned by the IOM Roundtable on Health Literacy
was released yesterday. I always watch for these papers by thought leaders in
the field to see the evolution of health literacy concept, measurement and
am quite disappointed this time.
One statement of fact jumped
out at me right away. The paper
lists an increase in the fertility rate among demographic trends behind the
increasing size and diversity of the population. But, according to the CDC the
US fertility rate is at an all time low. Births declined by 10% last year and
the Census Bureau reports population growth has slowed to its lowest rate in
decades. The authors are correct
that diversity continues to increase. Pew reports the number of immigrants in
the country doubled to 46 million between 1990 and 2013. (But the Pew Hispanic
Center announced in April 2012 that immigration from Mexico has stopped and
perhaps even reversed.) Diversity of cultures and language is indeed a
challenge for the healthcare system that adds urgency to health literacy
The concept of health literacy
presented in the paper seems confused. First health literacy is presented as a
cognitive deficit that leaves patients “unable
to understand and act on health information”,
placing the problem in patients and assuming it is intractable, therefore
requiring clinicians to over come or manage the problem. The approach is
necessarily information-centered and provider-centered, not patient-centered.
The authors also note that WHO considers health literacy a personal and
community asset, but seem not to notice this is contrary to their discussion
focused on low health literacy as a risk to patients and the system. Recommended universal
precautions are not sufficiently “on the ground” to
change practice and represent long held heath education principles (e.g.
educate using plain language, do a learning needs assessment).There is an
implied assumption that universal precautions, overseen by a new office in
healthcare organizations, is the whole solution. These precautions are common sense, but they are insufficient to
address true cognitive impairment in the elderly population, or to overcome what Doak Doak and Root described as gaps in logic,
language and experience, the origin of provider/patient communication problems
with both native and foreign-born patients.
The authors suggest that
efforts to develop an organization’s employees' health
literacy skills (knowledge of negative
impacts of low health literacy in patients, employee-employee communication)
can "empower communities to be active partners in their care.” This is faulty thinking. Establishing the attitude that patients are incapable of understanding and acting on
information, and so unable to learn and do what is needed to cope, recover, and
improve health, disempowers patients and providers alike, makes
patients unnecessarily dependent on professionals, and perpetuates the problem.
The authors close with a call for "trusted partnerships” between providers and patients; that requires
providers to trust patients. As long as we say that
what we need to make the healthcare system work is a smarter patient, we are
One more thing: Americans spend
about one hour per year in a clinical setting. What about health literacy in
the other 8764 hours?
Today volunteers are out all
over Seattle and King County. It's MLK Day, a national Day of Service in memory
of Dr King and his teaching that “Life's most persistent and urgent question is, 'What
are you doing for others?”
My friend and co-author Liz
Moore (aka the data whisperer) and I worked with folks fromCityFruit. Since 2008 this group has been promoting cultivation
of urban fruit to nourish people, build comity and protect the climate. Last year they tended,
harvested and distributed 6500 pounds of fruit grown on trees in Seattle city
and I worked on a hillside up behind the Amy Yee Tennis Center is south
Seattle. It turns out there are 30 some very mature long neglected apple and pear trees there,
perhaps a former orchard. City Fruit's 5 year plan includes rescuing the trees
from ivy, blackberry and underbrush, restoring them to productivity, and
sharing the harvest with neighbors and local food banks, and selling some to Seattle
restaurants to sustain the operation. Liz and I rescued three apple trees nearly strangled
by ivy and blackberry. And we learned something about our city, met some of our
fellow citizens and left the world a little better place. Thanks, Dr. King, for the inspiration and
leadership. Thanks to UW
and United Way of King Countyfor organizing the day of service. Thanks to all who
serve, and all who accept service. ss
If you have not see the
new Beginnings Pregnancy Guide, and the new Beginnings Guia para
Embarrazo, and the new Beginnings Parents Guide, take a look! Great new photos. All content checked and updated. A scan code instantly links your mobile device to new sections of BeginningsGuides.com direct
from the Guides. For parents
there are Pregnancy Resources and Parents Resources that we have investigated
and found to be reliable, easy to use and free of advertising. You service
providers will find lots of useful tools in the Resources for Beginnings Users
section. Also in 2013, we closed
the warehouse so now all our printing, inventory management and fulfillment are
in one place, at ColorGraphics Seattle. If you distribute Beginnings by mail,
we can print your envelopes, address, stuff
and mail them and manage returns.
What a Special Edition with program specific content and your program name on
it? We can do that, too.
had 50,000 visitors. 2000-4000 of you read the blogs
each month. And we have
900 Twitter followers.
blogsNotes from the Field CenteringPregnancy, Promoting Maternal Health
Literacy“Health Illiteracy” is Not a Disease
Promoting Health Literacy Nationally &
Cape Town, South Africa April 17-19, 2013
got to keynote the first conference on Building Children’s
Nursing for Africa organized by Univeristy of Cape Town School of Nursing and
Red Cross Children’s Hospital. My theme:empowering mothers for health. Now I am delighted to be serving as a guest
editor with Prof. Minette Cootzee for a special edition of South Africa’s national
nursing journal Curation is
featuring 12 articles from the conference.
Vancouver, BC, Canada May 1-4, 2013
I participated in an invitational international workshop that
initiated a new “knowledge hub” at
University of British Columbia. The consensus was that health literacy involves
patient, provider and system. I argued that this formula includes the provider
and the providers’context (the system) but
omits the patient’s social context. View
participants’ brief videos on health
Bozeman, MT, USA August
I got to keynote the Montana State Early Childhood Council’s
first Family Support Summit.
Theme: promoting maternal health literacy through home visiting. In
March 2014 I will return to MT to work with all staff of Ravelli Head Start in Hamilton, MT whose director Kristin
Segall recognized at the Summit that “Health
literacy is everybody’s job.”
Washington DC, October 26-28, 2013
Sydney, Australia November 26-29.
I was awarded a travel scholarship
to attend University of Sydney’s conference on health
literacy and participate in the second meeting of the Worldwide Universities Health Literacy Network. I participated with a group of
academics and patient representatives to plan an international collaboration on
developing health literacy as a community asset. That is just getting underway.
Health Literacy Training Videos Take 2
On to 2014. I so appreciate your partnership in serving mothers,
foundation of a healthy society. SS
It was my great good fortune to attend two International
multidisciplinary meetings of Health literacy researchers, practitioners
and policy makers sponsored by the Worldwide Universities Network. I
have previously reported on the May 2012 meeting at University of
Southampton, England. That meeting was dominated by Europeans and
characterized by lively debate that fleshed out themes and urgent
The second meeting took place in late November 2013 at University of
Sydney. The location attracted the Australian experts and was notably
influenced by the routine participation of consumer representatives in
healthcare, research, policy making, and fittingly in this meeting. I
was glad to reconnect with a number of researchers I met in Southampton.
Our purpose in Sydney was to formulate international collaborative
projects. The group of about 25 divided itself by interest area using
themes that emerged from the first meeting. Noting that project groups
were forming around research questions related to measurement, medical
education, and disease-specific questions, I proposed "health promotion
approach" as an alternative. That attracted four academics and three
consumer reps from Australia and the Netherlands who work with various
populations (e.g. Lebanese, Vietnamese, Dutch, Aboriginal). We want to
learn who are the "gatekeepers" of health in families and communities;
how have they been identified; and how have they been or how could they
be engaged to determine what supports individual and collective health
literacy. We will necessarily start with a lit review. Stay tuned. And
put Bondi Beach, a suburb of Sydney, on your bucket list.
Part 1 Maternal health
literacy as skills
A life skill
is a collection of skills necessary for full participation in everyday life.
Maternal health literacy is a life skill that mothers use to manage personal
and child health and healthcare.
It has been defined as the
cognitive & social skills that determine a mother’s motivation and ability
to act on information in ways that improve health (Renkert and Nutbeam, 2000).
Cognitive skills are used to
understand information; they include basic literacy skills, reading and
numeracy (ability to use numbers). A mother might use these basic skills to
learn about ear aches, and make an appointment to take her child to see a clinician.
So basic literacy skills are the essential foundation for health literacy.
Social skills are used to make
personal meaning from information, including speaking and listening. The mother
whose child has an ear ache uses these skills when she discusses with the
clinician the information on ear aches to understand why her child has them and
how she might prevent them.
Reflective skills combine
cognitive and social skills to think critically, make choices, formulate plans,
and take action. The mother in our
example uses reflective skills when she mulls over what the doctor said, what
she read, her experience of her child’s ear ache, her actions and parenting
practices, and her discussion with her mother about treatment options and
possible preventive measures. Some literacy scholars say that reflective skills
are so essential to applying information in context that it should be
classified as a basic skill. So we could say there are 4Rs: reading, ‘riting,
‘rithmatic, and reflection.
Health literacy means
empowerment (WHO 2013)
A health literate mother
combines all these skills to make health related choices and transform those
choice into desired action and outcomes. That is the World Bank’s definition of
empowerment. Say the mother
chooses to stop putting her baby to bed with a bottle. She takes that step, and
she enjoys her desired outcome, a happy ear-ache free baby. We say this mother
is empowered for health.
Her health literacy skills
enable her to minimize risk, maximize protective factors, and optimize health
promotion. In this way, a mother’s health literacy forms the foundation for her
health and her child’s health throughout their lives.
Many factors, in addition to
skills, interact to determine a woman’s maternal health literacy. More on that
I’ve been in Washington
DC where I co-presented a workshop at CenteringHealthcare Institute’s fourth
national conference. I was drawn to this organization the first time I read
their motto: Transforming care through
(CP) is a rapidly spreading model of group prenatal care.
Eight to 12 women with similar due dates have their prenatal visits together.
Each has the usual individual health assessment with an obstetrician or midwife
in the group space. Meanwhile the rest of the group engages in “self-care”;
they weigh themselves, take their own blood pressures and chart the data. They can read their own lab results and
ultrasound reports. The rest of their 1.5 -2 hour appointment is dedicated
to education and support through
facilitated group discussion and activities.
and processes are the same as for conventional individual prenatal care. The
schedule of visits and core content follow ACOG* guidelines.
founder and CEO, midwife Sharon Rising, emphasizes, “Content should not get in
the way of process.” The women talk about what they want to talk about. There
are games, activities and multiple ways of learning. Women test out what
they've heard; they explore their cultural beliefs and share sensitive issues
like violence that are only rarely discussed in traditional prenatal care. They
build community and function as a support group.
“March of Dimes wants all mothers to get prenatal care in
CenteringPregnancy,” says Judy Gooding, MOD’s Vice
President for Signature Programs. No wonder.
She describes CP as an
evidence-based program to prevent preterm birth and disparities in infant
health outcomes. MOD’s 2012
Preterm Birth Report card shows the US rate at 11.7% of all births. Among women
in CP the rate is 5.5%. The national low-birth-weight rate is 8.1% compared to
CP meets the Institute
of Medicine’s goals to make healthcare services safe, patient centered,
equitable, timely and efficient.
Participating mothers seem to agree. There is no waiting time, no need
to retell their story to strangers. They build a relationship with the
provider. What they like best is being with other women.
Rising says, “Facilitation is the secret sauce.” Clinician
facilitators are trained not to answer questions or instruct the group, but
rather to elicit the group wisdom and listen to what drives behavior. They come
to understand and appreciate the needs, beliefs, and struggles of the women and
the complexity of their live. Throughout the conference there were reports of
clinicians coming out of CP sessions where they completed the equivalent of
10-12 prenatal visits in 2 hours
beaming and talking in superlatives about their experience.
All this makes group
prenatal care the ultimate environment for promoting maternal health literacy.
I’ve been working for a year with WellPoint, the health insurance giant, to design a pilot to test the
hypothesis that CP promotes MHL as a side effect, and with facilitator
awareness, tools and strategies it can be very effective.More on that next
time. Meanwhile, visit http://www.centeringhealthcare.org/
Stay tuned. ss
FUD: Fear Uncertainty &Doubt. That is the foundation of the
extreme House Republican’ position on the Patient Protection and Affordable
Care Act of 2010. That’s why they
call it Obamacare- in order not to say “protection” or “affordable”; and to hide the fact that the law was
enacted 3 years ago, before the President was soundly re-elected running
against an opponent who vowed to repeal it.
FUD, initially an IBM strategy to eliminate market competitors by
spreading fear uncertainty and disinformation about their products, seems to be
working for the House Republicans. At least to some degree, for now. Polls and
analyses of social media suggest that some people favor the Affordable Care Act
while opposing Obamacare.
Home visitors: “Obama
snoopers” = FUD
I ignored the FUD like a parent ignoring a toddler’s temper
tantrum until I saw the Fox “news report” about the Affordable Care Act’s
expansion of home visitation. That’s
a preventive strategy in which public health nurses, social workers or
trained paraprofessionals connect families to healthcare and community
resources and offer health education and social support. It’s origins date back to the 1800s.
Programs are run by county health departments, school districts, foundations,
and private-public partnerships. Home visiting programs are open to poor
parents who request assistance.
It’s worth noting that in many countries, home visiting has long
been standard for all parents, because they acknowledge that parenting is a
challenge and everyone can use assistance. And because research shows it
improves child developmental outcomes and has immediate and long-term benefits
that extend to entire families and to the healthcare, education and justice
systems. My research shows that parents in home visitation significantly
improve their health literacy, capacity to manage personal and child health and
A Fox announcer and a “business expert” called home visitors
“Obama snoopers”. They said in this “brand new federal program”,
“government home inspectors” make random, unannounced “forced home visits” to snoop on parents. This is not news. This is pure FUD -
disinformation (lies) that specifically intends to instill fear, uncertainty
and doubt about the Affordable Care Act, to prevent people from learning they
can afford good healthcare coverage.
I have worked for decades with home visitors and know them to be
among the most caring, dedicated,
respectful people on the planet, unlike the FUDders on Fox and in the House.
FUD won’t work for long.
Yesterday, the heart of the Affordable Care Act started (keep saying the real
name), opening access to healthcare for millions of poor and uninsured
citizens. Almost 3 million people visited www.heathcare.gov. State exchanges were
similarly overwhelmed. People are
about to find out that the Affordable Care Act makes good healthcare coverage
affordable -for them. That will help them see through the FUD. Insurance companies are helping too.
They are enrolling people they previously rejected because, with the ACA, it’s
good for business. Healthcare executives are calling for more doctors, nurses
and allied health professionals - doesn’t really sound like a “job-killer” does
On the other hand, the House Republicans just put hundreds of
thousands of people out of work in hopes they can FUD us citizens of the
richest country in the world into continuing denying healthcare to poor people
and sick people in order to preserve the freedom of the rich to get richer.