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Beginnings Guides Blog

Sunday is Mothers’ Day.

 
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 productive.
 
Learn the deeper meaning of Mothers Day here:

Review of Beginnings Pregnancy Guide 9th Edition 2014 using PEMAT-P


26-member 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 Guide using 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
independently.

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.”

Understandability: (a 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 Numbers: 100%
Organization: 97%    Layout/Design: 96%   Visual Aids: 96%
 
    “Overall the book looks and reads very clearly and will be very understandable
     for a low level reader.

Actionability (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.
 
    “An additional plus is the links to other resources for specific topics.
 
Detailed results are displayed in Tables 1 and 2Table 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 factors similarly. 

Technical difficulties
About one 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.

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 materials.

Overall, the 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

        

Example from the field: Medication instructions show lots of room for improvement

My dad, age 86,  was hospitalized with arrhythmia. Hospital medical staff said his heart muscle looked strong and undamaged, but later another doctor said he had a minor heart attack. Dad was sent home with several medications with instructions to stop all his usual meds - including the multivitamin, and the stool softener prescribed by his internist. The hospital  nurses could not answer why those should be stopped…  Three days later Dad quit taking the new meds. He said they made him sleep 20 hours a day, and made him stupid when he was awake.  Worried, Mom set an appointment with his personal physician who adjusted the meds, lectured him about the danger of stopping them, and gave him this summary of new instructions.

 New Medications

 Medications to Continue Taking That Have Changed

     Other Medications
     START: amiodarone (amiodarone 200 mg oral tablet) 1 tab(s) Oral, every day. Refills: 0
     STOP:  amiodarone (amiodarone 200 mg oral tablet) 1 tab(s) 2 times a day. Refills: 0
 
 Medications to Continue with No Changes
     Other Medications

     aspirin (Aspirin Enteric Coated 325 mg oral delayed release tablet) 1 tab(s) Oral, every day, Refills: 0
    
     dufoxetine (Cynbalta 60 mg oral delayed release tablet) 1 cap(s) Oral, every day. (do not crush or chew). Refills:0

 No Longer Take the Following Medications

     digoxin 125 mcg (0.125mg) oral tablet) 1 tab(s) Oral, every day. Refills: 0

     metoprolol (Metoprolol Tartrate 25 mg oral tablet) 1 tab(s), Oral, 2 times a day. Refills: 0

 Contact your Physician Prior to Taking the Following Medications

     None

 Problem List
 No problem found

 Upcoming Appointments
 No appointment


While the summary shows good intent to inform the patient, it could be much easier to read, understand and act on.

1.     Delete the static 
Too many irrelevant words interfere with efforts to find the important information. The first heading  New Medications is meaningless. It amounts to static interference.  The information about meds to start and stop fits under the third heading:  Medications to Continue Taking That Have Changed; but an indented  subhead - Other Medications- is inserted between - more static. It’s another empty field on the form. These headings should automatically delete when the field is left empty.
 
2. Use upper and lower case. All the headings are in title case - all the words are capitalized. A capital letter signals the brain to stop and start something new. We recognize words by their shape. The cap changes the shape, and so slows reading and reduces comprehension.  It is odd that the proper names of the medications are not capitalized, but then in parentheses they are.
 
3. Use active voice and a verb in instructions. Medications to Continue with No Changes is a label.  A call to action is more understandable and actionable:   Keep taking these medications with no changes:
 
4. Make the changes clear. The information under START and STOP is very similar. It requires careful examination of every word and symbol to discern that the instruction is to take one a day instead of two. Few understand mg. Many do not understand oral, or tab(s), or the difference between cap(s) and tab(s),  or the meaning of delayed release.
 
5. Explain when to take the medication. What does 2 times a day mean? Before breakfast and after breakfast would comply with the instruction, but that might not be what the prescriber intends.
 
6.Use the Problem List (it’s a nice table on the form with cells for Onset and Comments). This would be a good place to give the patient and caregiver information about what these drugs are for.  The entry No problems found could leave one wondering why they are taking all this medication, and whether they should have seen the doctor.
 
7. Use the Upcoming Appointments form (another nice table with cells for date, time, location, appointment type(??) and provider.  The entry is No Appointment; but Mom has written in April 10, 1pm.
 
This form reflects an effort to be patient centered and improve compliance. But it is designed for ease and speed of entry by the provider, rather than for ease of understanding and right action by the patient and caregiver.  

 

The Making of Beginnings Guides


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 insurance program.
 
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, understandable information
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 birth weight.
 
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 college-educated women.
 
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 behavior
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 of pregnancy.)
 
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 their families.
 
The new updated 9th! edition is just off the press. In English and Spanish. Take a look.

The 7th Attribute - Navigation Assistance

“Health literate health care organizations design health care facilities with
features that help people find their way.”
 
So says the Institute of Medicine’s Ten Attributes of Health Literate Health
 
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 road.
 
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. Nurses rock.
 

CORRECTION: The discussion paper posted here yesterday

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.”

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.

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