Center for Health Literacy Promotion Blog
If you are hit
by a car going 20 miles an hour, you have 95% chance of survival. If the car is
going 30MPH, your chances drop to 55%, says Harborview
Injury Prevention & Research Center in Seattle. That is why signs in school zones say “Speed Limit 20”. It’s a national public health effort to reduce accidents
and injuries. A health literate driver would comply.
The Seattle Times reports a local driver had his $189
ticket for speeding through a school zone dismissed.
The judge agreed with his argument that too many words on the sign made it hard-to-impossible
for drivers to read in time to slow down. The driver cited the federal Manual on Uniform Traffic Control Devices, which
specifies fewer words. The City vows new
signs will adhere to the manual.
Wednesday, May 21 at 10AM, the start of the 217th CenteringPregnancy group at
Greenville Health Systems OB-Gyn Clinic in Greenville, SC. As participants
arrived, one with a friend, one with her cousin and her mother, one with her
husband, others on their own, Nora, an assistant facilitator, greeted them and gave them supplies to
make their name tags. She showed
each mom the routine for the first 30 minutes of each Centering session: Take your blood
pressure like this; record it here. This is what the numbers mean… Weigh
yourself; record it here. When she calls you, have a private visit
and brief exam with Vicki,
the nurse practitioner. Have a
snack, visit with other participants, or ask the midwife a private question.
Then for the next 90 minutes the
group of 9 expectant, mostly first-time mothers sat in circle with their supporters and three
facilitators, and me, the visitor there to learn about Centering. The initial
awkwardness faded quickly.
self-introductions and a lively, laughter-punctuated discussion of current
issues from morning sickness to cravings to farting; a basket of plastic food
items was passed around and we took turns talking about the items we chose. “So will you eat that during your pregnancy?”, Nora asked the group gesturing to the chocolate
dipped ice cream cone. Yes, the
group decided —after all
it is summer in SC. But not every day; as a special treat because it’s loaded with sugar and fat. At closing we each said
one thing we were going to do to stay or get healthy during this pregnancy… walk, drink water instead of sweet tea, try eating
CenteringPregnancy promote maternal health literacy?
opening session was also the kickoff of the CenteringPregnancy
Health Literacy Trial, although the group will not hear about until
their next session. The trial aims
to assess the capacity of CenteringPregnancy to promote maternal health
literacy and empowerment. A secondary aim to is validate the Maternal Health
Literacy Self Assessment designed for the project. We anticipate that the Centering model promotes mothers’ health literacy and health empowerment by supporting
knowledge gain and changes in health behaviors and healthcare utilization
practices. Previous studies have shown that social support from home
visitors is a catalyst for improved health literacy. In those studies, visitors
were trained to “Teach by Asking”, that is to ask reflect questions instead of
delivering health education. In Centering, rather than teaching and informing,
facilitators ask questions to elicit the group wisdom. The group provides
luck of the draw, about 120 pregnant women participating in CenteringPregnancy at
this Greenville clinic will comprise the comparison group in the trial; other
than completing the Self-Assessment, they will receive “usual care” in the
CenteringPregnancy model. An equal
number of participants at a second site will incorporate Beginnings
Pregnancy Guide into the program along with the Self-Assessments. We will
see if providing additional information promotes health literacy more than “usual care”.
tuned for more on the Maternal Health Literacy Self-Assessment.
It’s not a day for breakfast in bed, bon bons and roses. It is a day for peace.
Julia Ward Howe started Mothers
Day as a call for the women of the world to come together to protest war and create ways to do away
with war as an acceptable way to solve problems. This year we can celebrate not
only our own mothers and our fellow mothers. We can celebrate that America is
not at war.
And we can celebrate that with
the Affordable Care Act, America is supporting mothers in their role of
teaching children charity, mercy and patience and keeping families healthy and
Learn the deeper meaning of
Mothers Day here:
panel conducts independent reviews
In March 2014,
32 health and social services providers, program directors, trainers and
supervisors volunteered to assess the understandability and actionability of Beginnings
Pregnancy Guideusing the PEMAT-P — Patient
Education Materials Assessment Tool for Printable Materials from the Agency for
Healthcare Research and Quality. Twenty-six completed the assessment. The
secondary purpose of the review was to implement the new PEMAT-P and get a
sense of its utility. Each of the six booklets comprising the Beginnings
Pregnancy Guide was reviewed separately by four or five individuals working
Beginnings Pregnancy Guide Earns High Marks Understandability: 96.5% Actionability: 98%
I am particularly pleased with the
nearly perfect actionability score. Goethe said it centuries ago, “Understanding is not
enough, we must act.”
multisyllabic bit of Latinized jargon that is questionable in the context of
health literacy) is the quality of information that enables users comprehend
its meaning. The PEMAT-P asks reviewers to rate printable materials on 17
factors in six categories known to affect understandability. A score of 1 indicates the factor is
present; 0 indicates it is not; NA indicates the factor is not applicable.
Factor scores are expressed as the percent of possible scores of 1. The final
score is calculated as the average
of reviewers’ combined
scores in each category. Here are the category scores:
Content: 94% Word
Choice/Style: 96% Use of
Organization: 97% Layout/Design: 96% Visual Aids: 96%
"Overall the book looks and reads very clearly and will be
understandable for a low level reader.”
(more jargon) is the quality of information that enables users to take action.
Reviewers score seven contributing factors. The final score is calculated as
the average of the factor scores. The Pregnancy Guide earned 100% on
five of the actionability factors.
additional plus is the links to other resources for specific topics.”
Detailed results are displayed in Tables 1 and 2. Table 3 shows reviewers’ unsolicited
comments on the materials.
PEMAT-P shows good reliability
Testing during development of the tool showed acceptable
validity. Results of this project suggest the tool has good inter-rater
reliability, meaning that multiple reviewers of the same materials rate the
third of the reviewers struggled with the PEMAT web page. Technical
difficulties may have discouraged some of the six who did not submit a competed
form. SeeTable 4.
Personally, I recommend relabeling the buttons in the top
menu. I expected the PRINT button to print something; it brings up the Printed
Materials form. The bottom menu buttons are inactive on my machine. Those
buttons and the frame around the form take up space and require printing on two
pages in too-small type. I, and some others, found the numbering on the
Printable Materials form confusing; it skips items related only to audio-visual
PEMAT-P is a useful at-your-desk review that can improve materials in the
development process and weed out complex, fact heavy, concept-dense materials.
It cannot replace testing by intended users - both teachers and learners.
Kudos to the
developers of the PEMAT: Michael Wolf and Cindy Brach
Thanks to the reviewers: Betsy Rubin, Lori Lake, Pamela
Cho, Michelle Breuer, Dora McKean,, Kath Anderson, Joanne Martin, Tennessa
Dallas-Theus, Hudelaine Deus, Oscar Flores, Cheryl Underwood, Marisela Rosales,
Kobe Rives, Alli McClennen, Eva Perez, Lina Rooney, Elizabeth Burleson, Cynthia
Smith, Denise Powell, Katie Burnett, Leslie Munson, Mary Rosecky, Jeffrey
Wynnyk, Linda Wollesen, Margarita Franco, Maryellen Miller
learn in order to solve a problem they have now. Pregnancy and early parenting
present many new problems, along with new motivation to seek information. That
makes the prenatal to preschool period the most effective time to promote
maternal health literacy.
maternal health literacy means empowering mothers to better manage personal and
child health and healthcare. Print
information is a useful tool to do that. But not just any information. And not
just handing it to her.
first step toward health literacy is learning to obtain information
that is reliable, understandable and actionable. Information that get’s
read and shared and saved is also brief, attractive, encouraging and
conversational. Progress toward health literacy can start with skillfully
no info until it is requested.
rule of health literacy promotion is that the learner must be in charge of the
learning. The corollary is, give no information until it is requested. Then give the just essentials. Select
content that is easy to read and brief. Too much information, or info that
exceeds the learner’s skills, is
disempowering. It leaves the recipient feeling discouraged and overwhelmed, and
information that is not requested - delivering the curriculum- makes you the
expert in charge of the learning; it makes you the problem solver; it positions
the mother as incapable and unreliable.
In contrast, responding to
requests for information makes you a trusted partner to the self-directed
learner and problem solver.
that builds health literacy, not only
increases knowledge. It also develops a gourmet taste for learning, builds
confidence and presents opportunities for reflection, self-discovery and small,
doable steps toward better self-care and healthcare. Health literacy promoting
materials increase capacity to independently obtain more information
from reliable sources.
example, Beginnings Guides present free national 800 numbers to
anonymously get information and assistance with topics from domestic violence
to food safety to quit-smoking. The Pregnancy Guideenables a mother to differentiate common
discomforts of pregnancy from warning signs that warrant a call to her
healthcare provider, and prepares her to make the call. The new 2014 editions include a scan
code to link to pre-screened online resources from a mobile device.
Pregnancy Guide scores a Superior rating on 26 factors
known to affect reading and comprehension. See the SAM (Suitability Assessment of Materials) Review
of the Guides. Also,
watch for the results of the ongoing review by 30 experts and practitioners
using the new Patient Education Materials Assessment Tool (PEMAT-P) from the
Agency for Healthcare Research and Quality. It rates “understandability
and actionability” of information.
(I’m try not to think about puppies…)
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