Beginnings Guides Blog
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
them, and gave him this summary of new instructions.
Medications to Continue Taking That Have Changed
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
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
No problem found
the summary shows good intent to inform the patient, it could be much easier to
read, understand and act on.
Delete the static
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.
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.
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:
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.
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.
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
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
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.
FUD: Fear Uncertainty & Doubt. That is the foundation of the
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
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.
a preventive strategy in which public health nurses, social workers or
paraprofessionals connect families to healthcare and community
resources and offer
health education and social support. It’s origins date back to the 1800s.
are run by county health departments, school districts, foundations,
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
improve their health literacy, capacity to manage personal and
child health and
A Fox announcer and a “business expert” called home visitors
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,
and doubt about the Affordable Care Act, to prevent people from learning
can afford good healthcare coverage.
I have worked for decades with home visitors and know them to be
among the most
respectful people on the planet, unlike the FUDders on Fox and in
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
citizens. Almost 3 million people visited www.heathcare.gov
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
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.
beget skills. Cognitive and social skills needed to successfully manage
personal and child health and healthcare are those needed for success in
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
income or education. But poverty and accumulated disadvantage
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
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
In addition to Heckman’s monograph,
the book includes illuminating commentary
by 10 experts from multiple
The American Medical Association House
of Delegates declared obesity a disease
last month. Is this good for maternal
and child health? For public
In 1995 the National Heart Lung and
Blood Institute called obesity a “complex
multifactoral chronic disease”. Ten
years earlier, almost 30 years ago now,
NIH called prevention and treatment of
obesity a national medical priority.
With 90 million Americans now officially
obese, it seems few clinicians got the
prevention not a priority in maternity care
, I found that weighing is still the only procedure in
care that has shown any impact on outcomes. And yet it has
become uncommon for
a pregnant woman to be weighed at prenatal visits or
when being admitted to a
hospital for birth. Prenatal care providers have reported
they seldom weigh pregnant women or discuss weight for fear the conversation
interfere with their patient/provider relationship. Others said they do not know how
do it for them. One can
only hope that calling obesity a disease will change these
mothers, healthy babies. Fat mothers, fat babies
The issue in pregnancy is that a
mother with an excess of fat cells produces a baby
with an excess of fat cells. So we are building obesity
and the attendant health issues
into the next generation.
experiences - witnessing or experiencing interpersonal violence
related to obesity. A woman fearing abuse may hide in obesity, intentionally
making herself unattractive to protect herself. Is that a disease? With medical
many such women have lost weight, and gained it right back. That’s
how the lifelong
effects of ACEs were discovered.
Other mothers have said it doesn’t
matter if they gain too much in pregnancy since
they are just going to get
pregnant again; the weight can come off after that.
Only it rarelydoes.
people into patients
Google “obesity disease”. The first
thing that pops up is ad ad for weight loss surgery.
This may be more telling
than official statements.
Especially when we consider the Forbes
June 28 report that the AMA’s Council on Science
and Public Health, the group
appointed to address the question, advised against declaring
obesity a disease.
But the delegates chose ignore their own advisors.
We have to ask, what was so
Perhaps it is the implementation of
the Affordable Care Act that will bring healthcare
coverage to millions of
Americans previously excluded from the healthcare system.
At least a third of
them are obese. Now they can be patients.
According to CDC 35.7% of Americans
are obese, 49.5% of African Americans, 40% of
Mexican Americans. Rates vary
widely by state. Find your state rate at
in need of medical treatment.
Calling obesity a disease, again,
could draw attention to related health issues, but it
hasn’t in 20 years. It could result in better maternity
care, but the declaration is
unlikely to improve clinicians communication and
counseling skills. It could spark
Kennedy-style physical fitness craze, but that entails behavior change, and
communication issues. It
could increase research on obesity, but NIH already has a
Strategic Plan for
Obesity Research and funds nearly a billion
dollars worth of studies
annually. Grants.nih.gov lists 49 obesity-related
research solicitations currently open
for submission of grant
Only one thing seems certain, making
obesity a disease will increase medical treatments
and costs, and revenue to
2D, 3D or 4D. In-studio or at your
baby shower. Announce your pregnancy
with a “viewing party”. Get a video at the
mall. Post it on Facebook. Select the
premium package offered by a Miami
OB-GYN’s office and get a weekend discount.
American Institute of Ultrasound Medicine, American College of Obstetrician
and Gynecologists, American Academy of Family Physicians, March of Dimes,
Food and Drug Administration, England’s National Institute for Health and
Clinical Excellence, the UK’s
National Collaborating Centre for Women's and
Children's Health, and other
national and international experts all have published
against non-medical use of fetal ultrasound. The Society
of Obstetricians and Gynaecolgists of Canada
calls for a complete ban on non-
medical use of fetal ultrasound. The state of
Connecticut legislated a ban in 2009.
The FDA says that creating fetal
keepsake ultrasound images is “an unapproved
use of a medical device,” and
those who perform ultrasonography scans “without
a physician’s order may be in
violation of state or local laws or regulations.”
don’t need an excuse to be happy.”
Still internet ads for non-medical
ultrasounds abound, complete with slogans like
this, implying you don’t need a
medical reason for the “painless, relaxing procedure”.
The growing popularity
of “keepsake ultrasounds” is not due to cost or access issues.
companies pay for one or two doctor-ordered ultrasounds as part of
prenatal care, and commercial ultrasound is not cheap.
start at $175 for the 3D in-studio option. $500 for an “ultrasound party”
the location of your choice. The cheapest rate I saw was $75 for a basic
determination” scan; it’s discounted to $55 on Saturdays one OB-GYN’s office. These
services are not regulated or standardized.
sonographers say that ultrasound is safe. I found unclear statements like:
“All research provided has been proven to
be safe for expectant mothers and baby,
as long as the procedure is done by a
trained professional, and no longer that one
hour intervals.” First, we have to ask, research provided by
whom? and What about
the research that was not provided? Second, remember that no research ever proves
anything. It can only
offer statistical evidence. Then, a more accurate statement is
ultrasounds have not been proven harmful. Still the evidence has
convinced all the advisory and regulatory
agencies that entertainment ultrasounds
uses sound waves, not xrays. So radiation is not the issue. But the procedure
targets the fetus with heat and
pressure, especially prolonged, 4-D studies. New York
proposed a ban on ultrasonography for entertainment purposes, citing
showing that 4Dl ultrasound equipment can emit eight times more energy than the
machines commonly used in medical settings. The risk of effects on fetal development
demonstrated in both human and animal models, and remains, at least
so that the FDA
concludes exposing the fetus to ultrasound with no anticipation of medical
benefit is not justified.
concerns about non-medical ultrasonography include the possibility that
medical ultrasonography will fail to identify a problem with the baby,
the patient and her family; or that a false-positive result
could create unnecessary anxiety
and follow-up testing. Machines are
unregulated so may not be properly calibrated or
maintained. Technicians may
not be well-trained or proficient. “gender determination”
had never been an
accepted use of of ultrasound technology and raises thorny ethical issues.
are for doctors
Here’s the problem: In medical settings, the sonographer is commonly prohibited
explaining ultrasound results to the patient, who must then wait for days
or weeks to get the
results from the physician who ordered the scan. Family
members may be barred from attending
the ultrasound appointment to avoid
congestion in the radiology department. Parents may not
receive still pictures
or video to take home. If they do, they still cannot send it to a friend or
it online. Until these
disempowering practices change, parents and sonographers
to seek a more informative, convenient, family friendly experience.
Check Technician’s Credentials
sonographers are trained and certified. Find one, or check a technician’s
Pregnancy Guides says, “Ultrasound is
safe for you and Baby.” [p8] That
The 2014 edition will add this statement: Many healthy pregnancies do not need
ultrasounds may be harmful. The Registry of credentialed sonographers
Don't Order Fetal Ultrasound Videos As Souvenirs: FDA
Of the 10 most frequently performed
in-patient procedures, 5 are
related to maternity
care (2010 figures - latest available).
Bad news: the cesarean section
(surgical delivery) rate continues to rise; it is up 41%
since 2004, despite
global evidence that rates over 15% do more harm than good. This
is a place to
cut the cost of maternity care. A cesarean section costs on average $9956
more than vaginal delivery.
Good news: Fetal monitoring,
circumcision and stripping of membranes are performed
less frequently now than
in 1997. The reduction in procedures returns to mothers some
control over their
most significant life event, and begins to recognize that over-management
Number Performed in 2010 Increase in Frequency
Repair of obstetric 1,292,000 No change
Cesarean section 1,278,000 41%
Circumcision 1,164,000 -31%
Artificial rupture of 917,000 -5%
Fetal monitoring 875,000 -23%
Last time in this space I told Mandy’s
about the depressed 8-month old
who transformed over the course of
one week of simple everyday interactions.
The story illustrates the scientific
work of Bowlby and Robertson on the stages
children move through when separated
from their mothers due to hospitalization.
Mandy was well beyond the first stage
in a child’s response to separation: Protest.
This stage is marked by wailing and sobbing in confusion,
fear, grief at being
She was also beyond Stage 2: Despair.
The child becomes more hopeless and
apathetic. She withdraws. Like Mandy. This
going quiet is not settling in.
It is giving up and shutting down.
Mandy was well into Stage 3:
Detachment (or Denial). She had suppressed all
emotion, including - maybe
especially, feelings for her mother. She hardly
noticed when her mother left.
She was so withdrawn that she sought no
mothering at all. Now, i would recognize that as a sign
of major psychological trauma.
There are many lessons in Mandy’s
story. More on that next time. s
history of attachment theory and the stages of separation, plus a good
bibliography, see Van Der Horst, FCP
& Van Der Veer, R. (2009). Separation and Divergence:
The untold story of
James Robertson’s and John Bowlby’s Theoretical Dispute on Mother-Child
Separation. Journal of the History of the
Behavioral Sciences, Vol. 45(3), 236–252. Published
Wiley Periodicals, Inc.
I twisted my knee. Before long it is too sore to ignore, so I
check with a
physical therapist at the gym. He says he can fix it and that he
preferred provider on my insurance; his services will be fully covered.
I visit him nine times over two months. My knee is better.
But my mind is boggled.
A week after the final scheduled PT session, I get a nine page so-called
“Explanation of Benefits” from my health plan. For each visit, there is
on which I’m not-billed separately for Exercise Therapy,
Body Movement Therapy,
and Muscle or Nerve Trai.
I’m not sure what that third item is, or if I had it, or why the provider
billed $50, the plan
allows $33.46, so I owe $33.46.
The Note says
“3024”. So I
hunt through the pages and find a
section labeled NOTES.
Here is Note 3024 (their caps): SEE THE “REHABILITATION
SECTION IN THE ALLOWANCE SCHEDULE OF YOUR CERTIFICATE OF
Looking further, I see on the back of each page that if I
with the payment decision, I can “submit a request for appeal
180 days of this notice”. It
should be in writing and include
copies of my medical records.
Who has their medical records?
I can’t object to the decision since I can’t determine what the
procedure is. I don’t have a clue what the price should be.
I give up and take the stack of papers to my husband; he’s a
After a 15 minutes pouring
over the pile, we conclude that
not-a-bill says the services, including the mystery procedure “Nerve
are covered, at least
partly, but the insurer is not
going to pay;
perhaps because while the individual deductible has been
the family deductible
has not. But the the employer says
there is no
deductible on our plan... It seems the take home message is, “You
get a bill.” Hardly and EOB.
More like a “Not-an- Explanation of No-Benefits.
This story would suggest that, despite the PhD and 30 years in
services, I have low health
literacy. That is, I do not have the capacity
to process and understand
information necessary to make appropriate
health decisions. Likewise for my
husband the trial lawyer.
I’ve been impatient with the Plain Language crowd, thinking that
we all know about readability and jargon and all that by now.
I am wrong. Really wrong.
Keep at it Plain
This is the last in our series
using the SAM
pregnancy and parenting for low skilled readers who may be new
to the healthcare system.
For a good cultural fit
match readers’ LLE
Leonard and Cici Doak, authors
of the SAM,
concluded that most communication errors
in healthcare are caused
by cultural gaps
between patients and providers,particularly
gaps in Logic, Language &
Experience - LLE.
For anyone in health communications
-that’s everyone in healthcare, it’s an acronym
Logic refers to a way of
thinking about health, illness, treatment.
Because of their
specialized training, healthcare professionals have
a special way of thinking.
For example, to a clinician who sees 30
sick people per day, illness is normal,
another day at work, the usual
But to those 30 sick people, their illness is exceptional, a
major source of physical, emotional,
spiritual and financial stress for
a whole family, a reason to miss work and
suspend the usual routine.
The clinician’s routine challenge may be the
patient’s life changing
event. Consider, too differences between Western and
between medical specialties, between medicine and public health,
between medicine and
health promotion. A challenge for all health
communicators is to understand and
match the learner’s logic about
Language refers to a way
about health, illness, treatment
Of course, logic and language
To a professional the problem
may be hypertension exacerbated by
obesity; to the patient the problem is
bad blood making it hard to walk up the
stairs. In the West, we describe epilepsy
as a disease - abnormalities in brain
cells that cause seizures. Elsewhere,
epilepsy is described as blessing - a sign that the person may be
“the spirit catches you and you fall down”. Other language issues are
English is the language of the
If you are not proficient in English, you will struggle
every level. And even if you are, you may still
struggle when simple English
terms like stool and screen,
minor and routine take on a whole new medical meaning.
Or when simple concepts like walking and pus
or go home
on a whole new vocabulary like ambulation
Latin and Greek are the
language of medicine.
Terms are long and technical, so a natural short hand
emerges. As public relations director for a hospital that
specializes in heart
surgery, I encountered more than
one family who objected to hearing staff refer
their loved one as “the cabbage
in 206”. They were using shorthand for coronary
artery bypass, thinking and
talking about the patient as his procedure and
Experience refers to
participation in events as a basis of knowledge
A clinician lives in the
hospital or clinic. S/he is intimately familiar with
the technology. S/he is in
charge and in control. Everything is organized
for his or her convenience and
efficiency. His or her status comes from
specialized knowledge. In many cases, the patient has no
and very limited knowledge. That means no basis on which to judge
quality, weigh options, or interpret
instructions. At that same hospital,
two patients who had open heart surgery by
the same surgeon on the
same day were re-admitted two weeks later. Their doctor had
them to “take it easy.”
Both complied. One ran 3 miles instead of
his usual 5. The other never
got off the couch.
Who is responsible for
bridging the gap?
Federal, state and local laws,
Medicare and Medicaid regulations,
and accrediting bodies clearly state it is
the healthcare providers’
duty to communicate in a way the patient and family
SAM says Superior health education materials match the readers
and present images and examples that are realistic and and positive.
Beginnings Guides are intended for a broad
national audience. It’s
intent is to be as
culture-neutral as possible. We chose cover
art by Laurel Burch in which our testers saw
whatever was important to
Last words on SAM: Only
readers know for sure
SAM is an at-your-desk review. It cannot tell you that your
is easy to understand and use. Only the intended learners can tell you
that they learn
easily from your document. SAM helps you get your
materials to the point where
they are ready for Reader Verification
Interviews. More on that next time.
In this Part 10 of our series using
the SAM - Suitability Assessment of Materials
- to evaluate Beginnings Guides, we address layout,
the architecture of the page.
Like the architecture of a building, layout makes
a page inviting or intimidating,
easy or physically demanding to navigate,
memorable or nondescript. SAM
eight factors that substantially influence the suitability of health
materials by making the process of reading painless or not. We will
take them in
order. But first, I will add one essential item that SAM leaves
out and that all page
design should respect
gravity rules layout
Reading demands physical skill,
concentration and time, all of which may be in
short supply. The information
architect must ensure that none of the reader’s
effort and time are wasted, or
worse, sacrificed to design.
We read from the top left corner of
the page and work our way across and down;
left to right and back again to the
bottom right corner. Page design
this efficient pattern and avoid disturbing reading
rhythm. In testing, on average
percent of readers showed good comprehension of information that complied
reading gravity compared to 32 percent of readers of the same information
pages that required them to work against reading gravity. Learn more and see
Reading gravity explains many of the
suitability factors for layout.
illustrations adjacent to related text.
SAM says photos or other graphics
should be placed adjacent to the text that they
explain. Ideally the text is to
the left of the graphic (so you read it, then see the
explanatory graphic) and a caption
below the graphic. Otherwise,
the illustration becomes a distraction and
it easy to predict the flow of information
That means the content follows a
logical sequence and is presented consistently.
and the usual progress of pregnancy. Each of the six booklets uses
the same section
heads and text addresses similar subjects in consistent order
(e.g. Your Baby’s
Growth and Development). Warning Signs are always located on
the back cover;
they change by stage of pregnancy; no searching is required.
visual cues to direct attention to key content
For example, Beginnings Guides highlight key messages by displaying them in bold
in a box with 10% cyan( light blue) screen. Research suggests the light
screen attracts the eye
without interfering with comprehension. A cell phone
icon alerts the reader to a condition that
warrants a call to the doctor.
the page clean
Simple design works best for readers.
A cluttered page looks hard to read, and
most likely is. Testers may say the over-designed page
is more attractive, but
color in a supporting role
Color attracts the eye. Use it to lead
the reader to key content. Or to lure the
eye up to the “fallow corner” at the
upper right. Check to make sure the color
does not pull the eye against reading
gravity like it does below.
lines short - 30 to 50 characters and spaces
Remember the reading eye moves from
left to right
and back again. At the end of the line, the eye returns
starting place and drops down to the next line.
Unless something is in the way.
Then it has to search
for what is next,and be lost to the distraction.
high contrast between type and paper.
contrast is low, reading is difficult. For comprehension, black type on
says use non-gloss (matte) finish. Glossy paper carries a reflection which
can be distracting. However, other testing showed no difference in
A coated stock repels fingerprints and is more durable.
Beginnings Guides get a Superior rating for
complying with all these factors most
Material with fewer than three factors present or
that just looks uninviting or hard to
read is Inadequate.