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New IOM Discussion Paper on Health Literacy



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 intervention. 
 
I 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 issues.
 
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 stuck. 
 
One more thing: Americans spend about one hour per year in a clinical setting. What about
health literacy in the other 8764 hours?

MLK Day of Service

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 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
parks.  Liz 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 County  for organizing
the day of service. Thanks to all who serve, and all who accept service. ss


Reflection on 2013: Health Literacy Promotion Goes Global, Beginnings Guides Renewed

New  2014 Editions
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.
 
Speaking of the websites
BeginningsGuides.com had 125,000 visitors in 2013. HealthLiteracyPromotion.com 
had 50,000 visitors.  2000-4000 of you read the blogs each month. And we have
900 Twitter followers.
 
Most read blogs
Notes from the Field CenteringPregnancy, Promoting Maternal Health Literacy“Health Illiteracy” is Not a Disease
 
Promoting Health Literacy Nationally & Internationally
Cape Town, South Africa April 17-19, 2013
I 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
Curationis 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 literacy here.
 
Bozeman, MT, USA  August 19-20, 2013
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
This was a whirlwind as I presented on the
Conference, and presented a workshop with colleague April Thayer of WellPoint on the upcoming
pilot project to integrate health literacy promotion into CenteringPregnancy and field test the new

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
We planned to have the free training videos produced with the National Network of Libraries
of Medicine Pacific Northwest Region up on the websites in August. But we got good criticism
from our reviewers and we are revising accordingly. Stay tuned.

On to 2014. I so appreciate your partnership in serving mothers, foundation of a healthy society. SS

Worldwide Universities Network Health Literacy Meeting

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 issues.

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.

Maternal Health Literacy: Foundation of personal and public health


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, 2001).
 
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 next time.

Notes from the Field CenteringPregnancy, Promoting Maternal Health Literacy

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 disruptive design.
 
CenteringPregnancy (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.
 
Reimbursement levels and processes are the same as for conventional individual prenatal
care. The schedule of visits and core content follow ACOG* guidelines. 
 
Process trumps content
CenteringPregnancy’s 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’s 6.3%
 
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.
 
Sharon 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,
 
Stay tuned. ss
 
 
 

Government shutdown is all FUD

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 researchshows that parents in home
visitation significantly improve their health literacy, capacity to manage personal and
child health and healthcare.
 
Pure FUD
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 it?
 
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.
 
 
 
 

Top Reasons to Promote Maternal Health Literacy #5 (#1 if you are talking to a legislator or business leader)

Skills beget skills. Cognitive and social skills needed to successfully manage
personal and child health and healthcare are those needed for success in
life across cultures. They are skills that empower people to  be what
they want to be, to make choices and transform those choices into desired
actions and outcomes. 
 
These life skills develop most easily in early childhood given a stable
supportive family environment. Disparity in brain development in children
growing in disadvantaged vs enriched environments becomes apparent in
the first year.  Quality of family life matters more than the number of
parents, their income or education. But poverty and accumulated disadvantage
prevent parents from doing their best to sustain the stimulating home
environments that support optimal development, especially when they
themselves lack skills, resources and role models. Early intervention ---
early childhood education, parenting training, family support and home
visitation programs--- can produce positive and lasting effects on children
in disadvantaged families.  
 
Nobel Laureate and economics professor James Heckman, makes the business
case for shifting public policy to support programs that offer parents information,
choices and assistance.  Promoting health literacy means providing direct
supplemental assistance that specifically and intentionally enables parents to
develop and hone the range of life skills used to participate in healthcare and
manage personal and family health at home.
 
Must read: Heckman,  James J. (2013) Giving Kids a Fair Chance (A Strategy
That Works) MIT Press, Cambridge, Mass.  ISBN 978-0-262-01913-2 
In addition to Heckman’s monograph, the book includes illuminating commentary
by 10 experts from multiple disciplines.

Promoting Health Literacy with Beginnings Pregnancy Guide New Online: Resources for Mothers

My favorite feature of the upcoming 9th edition of the Pregnancy Guide recognizes
it is a digital world. You told us that you and your families need print materials since
few in your caseloads have computer access or devices to use digital information.
Other surveys confirm you’re right.
 
Poverty and the Digital Divide
In December 2010, 40% of  US households, did not have a broadband connection in
the home.  Lack of access is a marker of poverty. Mississippi is the poorest state
and has the highest proportion of households without access, 65%. Similar rates of
poverty and no-access are found in AR, TN, WV and OK.  Compare to wealthy
states led by HI with 74% connected, only 26% with no-access.  In cities, there is
commonly low access in the urban core suffering poverty while the wealthy suburbs
are fully wired.
 
Still, people find a way to get online
In a survey of over 2000 Mississippi households,  79% said someone in the home had
used the Internet. Outside locations included school, workplaces and the local
library.  In some libraries, free internet service is the biggest draw into the building.
 
Among the reasons for having no access at home were cost and lack of equipment,
but the key reason seemed to be lack of understanding of the value of the Internet,
an aspect of low health literacy.  Of those without access, 46% said they didn’t need
it or were not interested.  Others, especially younger, less educated, low income
adults said they mostly go online using their smartphones.
 
Access in steadily increasing
A February 2011 survey found 68% of households with a connection, suggesting
significant growth in just a few months.  Some of the most rural areas seem to be
improving quickly; but the South has shown only modest improvement. The Obama
administration has directed billions of economic stimulus dollars to increase Internet
access. And some companies have just begun offering low-cost broadband connection
to families with a child who qualifies for free school lunch.
 
Finding reliable information is part of health literacy
Any family expecting a baby has a need for information. Beginnings Pregnancy Guide
is intentionally focused on essential health behavior topics directly linked to pregnancy
outcomes. Some parents want to know more.
 
New Resources for Mothers coming to www.BeginningsGuides.com
For those who do have Internet access, and to motivate those who don’t to find a way,
the new 2014 edition of  Beginnings Pregnancy Guide includes this icon to encourage
readers to visit the new Resources for Mothers pages of www.BeginningsGuides.com 
The new section provides links to information and resources from reliable sources that
Beginnings Guides staff have reviewed and found easy to use. This reduces the need for
advanced searching and evaluation skills. We envision the new Resources for Mothers
as an easy entry into online self-directed learning about health and an opportunity for
parents to improve their health literacy.
 
 
 





Reference
Dunbar, J. (2012) Poverty Stretches the Digital Divide,  the Center for Public Integrity.

Beginnings Pregnancy Guide Update

The 2014 9th! edition of Beginnings Pregnancy Guide, in English and the 4th
Spanish edition are in production. Here are some of the changes to look for.
 
Who to call
A subtle but important revision is in who to call for information or assistance.
Previous editions have said, “... call your doctor.” Since physicians are not
always prepared or inclined to lead discussion of topics that are sensitive or
not strictly medical,  I added home visitors and sometimes doulas on topics
including breast feeding, smoking, abuse, weight gain, depressive symptoms,
conflicting advice, relationship issues, car seats, and labor pain management.
On these and similar subjects the new Beginnings says, “Talk with your doctor,
home visitor or doula.”   This supports a shift in parents’ thinking from “the
doctor takes care of my health” to ‘the doctor helps me take care of my health”.
 
Keys to a Healthy Baby, the health behavior messages that research links directly
to birth outcomes are modified slightly.“Do eat well” is expanded to “Do it well and
often”  since a pregnant body easily and quickly slips into starvation mode. Frequent
small meals best support fetal development.
 
“Do gain weight” is expanded to “Do gain weight slowly” In response to concerns
over obesity and the trend to gaining in excess of guidelines. The latest guidelines
recommend an 11 pound gain for a woman who starts pregnancy overweight.
 
“Do take vitamins” is expanded to “Do take vitamins everyday” to emphasize
the need for consistency to maintain a healthful level of nutrients in the body.
 
Early Inductions
Early term inductions of labor for vaginal birth more than doubled between
1990 and 2006 from 7.5 to 17.3%. And the percentage of later preterm C-section
deliveries increased by 46% from 23.5 to 34.3%.  A 2010 study found 44% of women
had their labor induced, often for convenience of the parent or the physician.
Those women were twice as likely to have a C-section as women who waited for
natural labor.( Ehrnethal  et al. July 2010 Ob&Gyn). In light of that trend, the
updated Pregnancy Guide’s discussion of the course of pregnancy (p46) includes a
statement that “Labor should not be induced before week 40, except for medical
reasons. The section titled  Baby’s Growth and Development, 9th month (p61)
encourages readers to exercise their health literacy skills and speak up about this
concern. “If your doctor talks to you about inducing labor, ask if you wait until
week 40.”
 
Other revisions
Nuchal lucency test is added to the discussion of prenatal testing.
 
Juice is de-emphasized in favor of water.  Juice was considered a healthful
alternative. However, with the increase in obesity, extra calories  and sugars
in juice are of concern.
 
Next: My favorite change. 
 
Reference: National Center for Health Statistics Data Brief 24, Nov 2009.
http://www.cdc.gov/nchs/data/databriefs/db24.pdf
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