Beginnings Guides Blog
prescribe E5 for sustainable health systems"
the tagline for a year-long patient-empowerment campaign launched in May by the
Patients Forum, a coalition of organizations representing 150 million
Europeans, and the British, too, are looking at empowerment as a financial
imperative. And we should, too.
Here's the problem: traditional healthcare systems were designed for infectious
disease. Treatment fitting the
disease was prescribed and managed by
professionals while patients complied and were cured or died. That
disease-focused model prevails but cannot sustain treatment of modern chronic
conditions and aging populations
where treatment needs differ, treatment
options are complex, patients self-manage and live decades with their
campaign defines patient empowerment as a process that helps people gain
control over their own lives
and increases their capacity to act on issues that they themselves
define as important.” Heath literacy is
considered an aspect
; it helps people gain control over their health and its
resources are considered tools for empowerment. If we consider
information and services as
tools for empowerment, how would we design them
differently? What if the purpose of Informed Consent was
to empower patient
choice rather than legally protect providers?
five “Es” of Empowerment:
• Education: patients can make informed decisions
about their health if they are able to access all the relevant information, in
an easily understandable format.
• Expertise: patients self-manage their
condition every day so they have a unique expertise on healthcare
to be supported.
• Equality: patients need support
to become equal partners with health professionals in the management of their
• Experience: individual patients work with patient
organizations to represent them, and channel their experience
• Engagement: patients need to be involved in
designing more effective healthcare for all, and in research to
deliver new and
better treatments and services
empowerment is a challenge for professionals, too
the European stakeholders, including health professionals, agreed that a major
barrier to achieving the five Es
is health professionals' attitudes. This is not surprising, and it's
likely the same in the US. Special
been a source of power and status for physicians for
centuries. Health education curricula is defined but de-funded
in most schools
so patients often lack essential knowledge. Skills to collaborate with less knowledgeable patients
respected, equal partners with useful expertise are not developed in medical
school. And there is never enough
analysis of US health literacy
discourse suggests that here, as in Europe, professional attitudes inhibit
patient empowerment. The term
empowerment is rarely mentioned. Patients are described' as
"hard-to-reach" or "illiterate",
with "inadequate" or "marginal" skills, who
"fail" to comply or "just don't care".
If empowering the patient was part of
every treatment plan, how would we describe patients differently?
What would we do differently?
Learn more about the
Patient Empowerment Campaign
Follow them at @PatientsprescribE
A body needs about 500 mg per day. The American Heart Association
recommends not more than 1500 mg per day.
The average American adult consumes
3400 mg per day. The average 4 year old consumes 2500 mg. More than 2300
linked to high blood pressure, hypertension, PMS, and kidney dysfunction. Can
you name it?
It's Na, sodium, soda—salt
If we reduced our average salt intake by 3g per day, strong and
clear scientific evidence says we'd have 60,000 to
120,000 fewer new cases of
heart disease annually, 32,000 to 66,000 fewer strokes and 44,000 to 92,000
deaths from any cause. All segments of the population would benefit,
particularly African Americans, women,
elderly, children. Even if we gradually
reduced salt intake by 1g per day over the next 10 years, that would be
more cost-effective than
using medications to lower blood pressure in all persons with hypertension.
The news release includes a link to a summary of the
The Health Literacy Challenge
The evidence is undeniable. We need to reduce salt intake. But
it's a strident challenge. The American Heart
Association offers some good
infographics advising us to "change our salty ways"; but the advice
is far from simple,
and likely to have limited effect.
your sodium palate. Hardly
plain language. The imperative assumes understanding that a body wants
is used to getting. So if you eat less salt, after a few weeks you lose your
taste for it. And if you feed a
toddler salty food, s/he develops a taste for
enjoying foods with less salt.
That means don't use the salt shaker at the table; but only about 6% of
our total salt intake comes from the shaker. About 75% comes from processed and
prepared foods. The rest is
naturally occurring in almost all foods. So the
message means eat fresh fruit, vegetables and meats. That works
if you can find
fresh food in your neighborhood, can afford to buy it and store it, and have
time and skills to
prepare it. But we average Americans eat at fast food
restaurants 4 to 5 times a week. We favor "The Salty 6":
rolls, cold cuts and cured meats, pizza, canned soup, sandwiches, poultry.
for lower sodium items. This directive assumes you know that salt and
sodium are the same thing and
items means food. Looking for such items
means reading food labels (about 48% say they do), and knowing to add
listed as Na, soda, baking soda, sodium, salt— all salt.
The Numeracy Challenge:
What's a mg?
Sodium content is listed in mg —milligrams or g —grams. This is not informative. Only
scientists talk about grams.
Here's translation: 500 mg, the daily amount of salt a body needs to
function, is 1/4 teaspoon (that's a measuring
spoon, not a spoon to stir tea)
or 3-4 shakes of the shaker. The recommended maximum intake is 1500mg or 3/4
tsp. The FDA wants the food industry to gradually reduce sodium in food
processing and preparation to get our
average daily intake down to 2300 mg,
about 1 tsp. One gram is about 1/5
tsp. Here is a converter
These challenges are part of the reason the FDA is working with
restaurants and food producers to lower the
amount of sodium in the food supply
over the next ten years. You can read the proposed guidelines
on them. For best consideration comment within 90 days. Meanwhile, health educators, any way a
person can reduce salt intake even a little is likely to enhance their health.
Accessibility: A Universal Precaution
My dad states his age as older-than-dirt. He's lost all hearing and has a bad
back. He gets around with a walker. It's impossible for him to call the doctor
to report an issue or schedule an appointment. He cannot drive or use public
transportation. A routine office visit—getting dressed, out of the house, into
the car, out of the car, into the office and onto the exam table, and then the
whole process in reverse — each
step is an exhausting physical challenge and an assault on his pride. It's also
exhausting and trying for Mom, his primary caregiver, driver and emotional
compass. A check-up takes most of
a day. Nothing is simple.
Recently, Dad slipped off
the edge of the bed and twisted his knee trying to get up. That led to four 911
calls: one to get him up (and discover he could not stand), and three
"citizen assists" to get
him to the doctor's office, from there to the hospital, and after a night in
the hospital, to get him home and into bed. Thank you, my fellow tax payers.
He's not alone.
About 70 million of us Americans have such access needs that
affect hearing, vision, or mobility and impair capacity to obtain heath
information and services. People
with access needs contend with marked health disparities that may originate
from the most fundamental level
—like inability to schedule an appointment, open a pill bottle, or read the
fine print dosing instruction. Disparities also come from health professionals
and researchers acting on assumption and stereotyping instead of data.
Access: first pre-requisite to health literacy
Access, the capacity to obtain…. information and services,
is the first prerequisite to health literacy. And yet, several reviews report
accessibility is not a topic of health literacy research and scholarly
discussion. Further, access needs
is a missing demographic variable in most national databases.
Case in point: the 2003
National Assessment of Adult Literacy population sample included 30% with
access needs; among them nearly half (48%) were deemed to have below basic
health literacy. This is likely an underestimation since NAAL excluded those "who
could not be interviewed due to cognitive or mental disabilities" and did
not report demographics of those with access needs. A worldwide review of
interventions to improve health literacy reports that research has, for the
most part, followed NAAL's example and intentionally excluded people with
mental or physical disabilities, along with other disadvantaged or
"hard-to-reach" groups. Lumping together and then excluding "the
disabled" from research causes disparities to persist; it's ethically
questionable and alienating.
Reacting to a nurse who obviously assumed that his access needs
indicated a cognitive deficit, Dad retorted, " I've got a little back
problem. I can read."
Integrate accessibility into research, practice, policy
Health literacy standards should include accessibility and
universal design approaches that make healthcare environments and information
products usable to the greatest extent possible by everyone, regardless of
their age, ability, or status in life.
Health literacy research should include accessibility, directly involve
people with access needs, and report access-related demographics. To make the
research process itself accessible to those with access needs, reports, like
other health information, should
be available in multiple formats: standard, large print, Braile, text only
electronic format, audiotape, sign language.
Experts suggest we make
greater use of access-enabling assistive technology to communicate with people
with disabilities. The technologies show how universal design and commitment to
accessibility help us all; email,
voice recognition, captioning, GPS — all were originally designed for
those with access needs.
References & further reading
Perlow E. (2010).
Accessibility: Global Gateway to Health Literacy. Health Promotion Practice
11 (1); 123-131.
D'Eath M, Barry MM, &
Sixsmith J.(2012)tera Rapid Evidence Review of Interventions for Improving
Health Literacy. Stockholm: European Center for Disease Prevention and Control.
Men, wear your rubbers. Even if you have no symptoms
If you have travelled to one of 25 countries
where Zika virus is
spreading rapidly, or if you are planning to attend the Summer Olympic Games in
stock up on condoms. Get any
brand, style, size or type of condom,
plus cool posters, key chains and reminders at GlobalProtection.com
Consider visiting the Great Northwest instead of Rio
Public health warnings
related to mosquito bites and birth defects intensified this week. Leading
national and international health organizations now advise men possibly bit by
mosquitos carrying the virus to use condoms. At least three cases of sexual transmission have been
confirmed. CDC says, so far, there is no evidence of transmission from an
infected woman to a sexual partner. Zika virus has not spread to the US; but
experts expect local transmission in southern states. The day-biting skeeters
that spread Zika like tropical climates. Local spread is already reported in US
territories — Puerto Rico. Virgin Islands, American Samoa. Health officials say
there is virtually no risk of Zika coming to Washington state or Canada.
Zika is barely noticeable in adults, devastating to developing
Mounting evidence links the
Zika virus to microcephaly, usually defined as head size two standard
deviations smaller than the mean for age, size and gender. Last week Brazilian researchers found
evidence that the virus attacks developing babies in the womb. It seems to
target nerve cells causing brain damage and developmental disabilities. Seattle Times
Jonel Aleccia interviewed Dr William Dobyns of Seattle Children’s Hospital
after he reviewed brain scans from Brazilian babies. He found an “extremely
rare, recognizable pattern” of severe cerebral palsy, epilepsy and feeding
From a health literacy standpoint, “Use a condom” is understandable and
actionable. Condoms are inexpensive, readily available, and require no
prescription. In some countries, governments are giving away condoms. Earlier, still standing, advice telling
women to avoid pregnancy, is understandable but not actionable in Zika-infected
countries where women have very limited access to birth control and abortion
and little protection from sexual violence.
What to tell a woman who travelled to a Zika-infected area,
or had sex with a
partner returning from a Zika-infected country: “See your doctor right away.” CDC recommends that women with symptoms
blood test, but at this point only a few advanced labs can do the test. It is not known whether babies of women
with no symptoms become infected. Knowledge is advancing rapidly. Advice will
continue to change. Stay tuned.
pregnant until 2018.
That is the
current public health message from El Salvador’s health minister. Colombian
women are warned to postpone pregnancy for 6 to 8 months. Jamaica just released
similar advice. The intent is to prevent mother-to-baby transmission of Zika.
known since 1947 as a rare mild disease limited to central Africa, is spreading
rapidly across dozens of countries in Latin America and the Caribbean. No one
knows why. The World Health Organization (WHO) warns Zika is likely to reach
every country in the Americas, except Canada and Chili. There is no treatment
or vaccine, largely because only about 20 percent of infected adults have any
symptoms. They might have a headache, body aches, a fever and red eyes for a
Here is the public health concern: in Brazil, since an outbreak of Zika
started there last May, more than 3800 babies have been born with microcephaly,
30 times the expected rate, according to WHO. Microcephaly is a rare birth
defect characterized by a very small head and incomplete brain development
leading to death or lifelong disability. There is little scientific evidence,
but the apparent association between Zika and microcephaly warrants public
health warnings, and delaying pregnancy seems wise. However…
The advice to women to avoid
pregnancy ignores the context in which they are expected to comply. In El Salvador and
Colombia there is little access to contraception, especially for poor rural
women. Abortion is illegal in all cases in El Salvador, where the teen
pregnancy rate is among the highest in Latin America accounting for a third of
all births. Abortion is illegal in
99% of cases in Colombia. In Jamaica, abortion is legal in some cases with the
approval of the father and two medical specialists. There is little or no sex
education in the schools. Sexual violence is prevalent. So women lack the
knowledge, services and power to heed the advice.
Colombia’s health minister explained that
his message to women is a good way to communicate risk. The minister seems to
forget that women do not become pregnant by themselves. No similar messages
have been directed to men. For sure, women who hear the warning will fear
pregnancy and birth defects more than they already do, but left to protect
themselves, this amounts to a “Just say No” campaign. It leaves women
vulnerable to blame for unplanned pregnancy and birth defects in their babies,
and to charges of non-compliance that could be misinterpreted as evidence of
low health literacy.
better message, free of gender bias, understandable and actionable, is to avoid
mosquito bites. CDC has issued Level 2 travel advisories (for all, not just pregnant women) for
the Caribbean, South and Central America, Puerto Rico, Cape Verde, Samoa and
Mexico. Travelers are advised to “practice enhanced precautions”.
In this case,
your doctor before and after travel to areas where Zika is active
insect repellant (safe and effective for pregnant women)
clothing to cover as much of your body as possible
under a mosquito net
doors and windows closed or screened
mosquitos bite in the morning, not just late afternoon and evening like other
lasts only a week or less. The danger is only to a current pregnancy. There is no danger to future
US Centers for
Disease Control and Prevention www.cdc.gov/zika
. Information is being updated
Health literacy refers to a person’s ability to use information and services for health. (More definitions)
Using information for health implies three steps:
1) Understanding, that is, decoding the words
2) Making personal meaning, that is, reflecting on the question: What does this mean for me in my situation with my resources, my family, my beliefs, my values?
3) Acting, that is, making choices and turning those choices into desired actions and health outcomes.
These steps coincide with three steps in problem solving,
1) What do you want? For example, a woman decodes information in Beginnings Pregnancy Guide. She understands smoking can harm an unborn baby.
2) What have you got? She acknowledges that she has a pregnancy, and a smoking habit that she enjoys and that relieves stress. She has a husband who smokes and a mother-in-law who smoked through her pregnancy and has a son who turned out fine. She has a budget already stretched, a friend who’s been after her to quit, and a doctor who’s offered some aids. Through self-reflection and discussion with family, friends, experts she makes personal meaning from the information.
3) What’s Next? She makes a choice (decision) not to act or to take action — some small step that she is willing and able to do now to move toward her chosen outcome — a healthy baby, which she understands requires a smoke-free womb.
It is the action (or inaction) that affects the outcome.
The first two steps in using information for health, and in addressing a health problem, are “all in your head”, a purely cognitive exercise with no health effects.
What’s empowerment got to do with it?
Take another look at Step 3 in using information for health: making choices and turning those choices into desired actions and health outcomes. This is the World Bank’s definition of empowerment. And the “Three-Step Dance” is the process of empowerment described by David Emerald in his book The Power of TED* The Empowerment Dynamic.
Empowerment is the act-ive ingredient in health literacy. Without it, it’s all in your head.
“Knowing is not enough; we must apply. Willing is not enough; we must do.” ~Goethe
Note the Goethe quote is typically featured in the front matter of reports from the Academy of Medicine (formerly the Institute of Medicine). It is often attributed to Bruce Lee, but Goethe said it first)
Alsop, R. & Heinsohn, N. (2005) Measuring Empowerment in Practice : Structuring Analysis and Framing Indicators. World Bank. Free online: https://openknowledge.worldbank.org/handle/10986/8856
Can you name
It doubles+ the risk of eight of the ten leading causes of death,
which account for about 75% of the $3Trillion Americans spend on healthcare
annually. It explains half of learning and behavior problems in children. It is
prevalent in all sectors of society, at home and around the world. It meets the
criteria for a public health crisis. Can you name it?
It is ACEs — Adverse
I’ve written here
before about ACEs. I’ve said that anyone
working in maternal-child health, or early childhood education, K-12 education,
child care, chronic disease, or health literacy needs to know about the lasting
destructive power of ACEs.
participating in the 30th Zero To Three national conference held last week here
in Seattle, I understand ACEs are not just another related issue we should
be tracking. It is time to
acknowledge and address ACEs as the biggest barrier to personal and public
health, and to improving heath literacy. As keynote speaker, pediatrician
Nadine Burke Harris says, “ We — all of us — are the solution.”
Work in all
the many fields that aim to build a strong foundation for healthy child
development is futile where ACEs cause that foundation to crumble and leave
children physically, mentally, and emotionally predisposed to impaired
cognitive and emotional development, and to adulthood defined by diabetes,
obesity, heart and lung diseases, cancers. In the context of health literacy, unacknowledged
ACEs must be viewed as a looming barrier to health across the lifecourse, to
literacy, and to effective participation in healthcare and society. It is a
multigenerational problem. A mother with unaddressed ACEs cannot buffer her
child from ACEs.
last a lifetime, for
better or worse, by default or by design. ACEs are the worse-by-default
part that Zero To Three
mantra. By definition an Adverse
Childhood Experience occurs in childhood (< age 18) and the person remembers
it as an adult. Here are the nine
types of ACEs:
* physical abuse
* sexual abuse
* emotional abuse
* mental illness of a household member
* problematic drinking or alcoholism of a
* illegal street or prescription drug use by a
* divorce or separation of a parent
* domestic violence towards a parent
* incarceration of a household member
Why ACEs matter so much for so long
These are more
than unhappy memories. A baby’s brain is only partially (about 25%) developed
at birth so that it can be wired to enable the baby to survive in the
environment into which s/he is born.
Babies absorb everything they see, hear, feel and otherwise experience.
Those experiences tell the brain what to expect and how to be ready for it. By
Baby’s first birthday, brain wiring is 70% complete, by age 3, it’s 85% wired.
So the earlier the experience, the greater and more lasting it’s impact.
repeated ACEs, four or more of the listed experiences, or the same experience
repeated frequently, the brain and all the body systems get stuck on high
alert; living in a crouch, always expecting something bad to happen. The Fight,
Flee or Freeze mechanism is designed as an emergency response system. When danger is past, it is supposed
to switch off so the body returns to a normal relaxed state. When it is stuck
in the On position, little energy and attention are available for learning and
cognitive development. Self-regulation becomes a strident challenge; behavioral
problems ensue. Eventually, the wear and tear of constant stress on the body’s
systems manifest as non-communicable adult disease. The leading causes of adult deaths worldwide have their
origins in early development. In ACEs.
Find your ACE Score:
See how ACEs have affected
you. Use the questions to generate
a reflective conversation with a mother about her ACEs and their impacts on her
life and parenting. Testing shows
the questions do not spur trauma or need for professional help. Download the questionnaire
View Dr. Burke
Harris’ TED Talk
childhood trauma affects health across a lifetime”
Next: How we can
use information about Adverse Childhood Experiences
This question was
raised by Winston Wong, Director of Disparities Improvement and
Quality Initiatives at Kaiser
Permanente, during the Institute of Medicine's recent workshop,
Health Literacy: Past, Present and Future.
The workshop marked 10 years
since IOM released the landmark
report Health Literacy: A Prescription to End
A summary of the workshop
proceedings was released this month. Download a summary
free from National Academy of Sciences. Definitely
worth the read.
Here's the part
that made me stop and applaud
In a discussion about health literacy
and its role in achieving equity, Wong
recounted a conversation among
health plan leaders on patients'
non-medical needs (social determinants of health), that led to the question:
should be the core conversation between a doctor and an individual s/he sees
for 15 minutes per year?
“One interesting proposition is that we should start the
discussion with every person we come in contact with
by asking 'what does a
good day mean to you,’"
Wong said, "because that’s really a much more important
than ‘what hurts’ or ‘have you been
taking your medicine today.’”
Why is this
question more important than typical problem-focused inquiries?
Wong said it
reflects the fact that medicine can help with some problems, but what ultimately
makes for a
good day for someone is determined by a constellation of actors
that foster good health. The question
recognizes that on average Americans
spend about one hour per year in a clinical setting; the healthcare
professional is just one actors; s/he marshals resources that account for about
10% of health. The other
are the people the individual is with the other 8764.81 hours per year. The
power to create health,
and to live well with disease, is with the patient.
What is a good day
like for you? addresses the person and
his/her "real life",
instead of focusing narrowly
on the patients' disease and
treatment. It suggests the patient's selfcare is achieving some good days,
than reducing the person to a medical problem and assuming that s/he has
failed to comply with the medication
What is a
good day like for you? is a good
> It cannot be
answered yes or no. It requires the respondent to think
critically about what matters to them,
to reflect on what they want from
medical care and how they will know they got it. It leads to conversation
what the person is able and willing to do now to achieve more good days.
> The response
serves the patient, rather than simply informing the clinician.
> The response
enables the clinician to hear and adopt the patient's words, so the patient is
to learn medical terminology, and the clinician is not expected to
check a glossary of simplified terms.
> The question allows the patient to
figure out and articulate what they want and need, making it easier
provider to achieve patient satisfaction.
> It shifts
thinking and conversation from what patient and clinician do not want — disease
how to get rid of it, to what they
do want —good days— and how to get more of them.
The hard part is
waiting for the response
Patients are not accustomed to being
asked reflective questions, especially by clinicians. Many, especially
who live in poverty and face daily discrimination, are rarely asked questions
and may be trained not
The reflexive first response is likely to be "I don't
know". They need a way to
think about it. Try
again; Can you remember a good day or a good
moment? Then the hard part:
wait. Let them be the one to
the silence. Ask follow up
questions to help the patient clarify what s/he wants, and what will tell her
that she got it; what has worked before and what is needed to achieve more good
days. An effective
conversation will end with the patient articulating the
action s/he will take and the clinician offering
supportive information and
More on reflective
McGinnis, Pamela Williams-Russo and James R. Knickman The Case For More Active
In Florida, if someone scares you
to death you can legally shoot them to death with your BLEEP. But your
family doctor or
pediatrician or health worker cannot legally ask you if a BLEEP is kept in your
house or how
it is stored.
Apparently even thinking about the
risk of unsecured BLEEPs to their children’s and
right to keep BLEEPs anywhere and any way
they want. This BLEEP has been
since 2011. (The part that made asking about BLEEPs a felony with
jail time and a $5 Million fine did not pass).
Physicians groups challenged the
law. It was upheld as constitutional in Florida since BLEEP ownership and
is a private matter unrelated to medical care.
BLEEPs and tobacco are the only
products on the market that when used correctly kill people; BLEEPS kill lots
of people, often children, in a seconds.
So BLEEPS can’t be a private matter.
Safety Checklist for a Crawler:
BLEEPS are unrelated to medical
care until a child -or some one
else- or the owner- is injured by the patients’ BLEEPs. Then
taxpayers fund emergency response and
medical care for totally
preventable horrific injury or death, and related
increased insurance premiums, and lost contributions to
And we live in fear…. Oh, I see, if you live in fear - get a BLEEP.
Texas legislature entertained a similar gag rule this month.
Death in the United States:
A Call to Action From 8 Health Professional Organizations and the American Bar Association.
Ann Intern Med. 2015 Feb 24. doi:
10.7326/M15-0337. [Epub ahead of print]
Ferrris S. Children’s Defense Fund report on Childs’ BLEEP deaths, new BLEEP laws Data analysis: More
preschool kids dead from BLEEPfire than
police. May 19, 2014
Walters, E. Bill Would Prohibit
Doctors From Asking About BLEEPs. The Texas Tribune March 18, 2015
Pitts, L. Republican list of things you cannot say.
Seattle Times March 19, 2015
In a reversal of its recommendations
that have for years cautioned against children and pregnant or breastfeeding
women eating fish, the Food and Drug Administration’s new guidelines reflect recognition that fish is a great source
of protein and other essential nutrients. For the first time, the FDA has
specified a minimum intake of fish and other seafood.
8 to 12 ounces per week—
2 or 3 servings
That’s the new minimum
for a healthy diet. Beginnings
Pregnancy Guide (
2014) recommends 1 or 2 servings per
week, the previous maximum recommendation, now considered overly cautious.
The warning to avoid large, long-lived fish like swordfish,
mackerel and tile fish remains.
Those big fish live long enough to build up
organic mercury in their flesh. According to MedlinePlus
medical evidence suggests that being exposed to large amounts of the organic
mercury called methylmercury while pregnant can permanently damage the baby’s developing brain. Small exposures
are unlikely to cause any problems.
Choose canned light tuna
Salmon, shrimp. and other seafood that Beginnings lists as
safe and healthy, are still safe and healthy. It is important to caution mothers against canned white albacore tuna since it has three times the mercury of the recommended
canned light tuna. The FDA suggests limiting tuna to 6 ounces a week.
Beginnings Pregnancy Guide (2014) pg. 13
Use the Fish Safety Hotline
That’s 1-888-723-3366 to check the safety of fish in your area. This free 24 hour resource is listed on
the Pregnancy Guide’s Key Messages Poster
and on page 42.