Beginnings Guides Blog
Health Literacy: An economic issue
In the US, literacy has long been addressed as an economic issue, a pre-requisite for a
productive workforce in a competitive global economy. Some scholars argue that political campaigns to address
adult low literacy have been undertaken repeatedly in the US and elsewhere to
explain or distract from economic downturns, most recently in 1991 by GH Bush., That campaign produced the
the 1992 National Adult Literacy Survey. Results led academic medical
researchers to discover a glacier in their backyard — the
fact that few Americans understand information from doctors or insurers. The first health literacy studies in the medical literature
came out in 1993.
literacy as an explanation for national economic woes extended to patients' low
literacy as an explanation for low quality, high costs and inequities in
healthcare. Health literacy
was understood as low functional literacy (reading and numeracy) in a clinical
setting. The thinking went like this: if patients could read better, they would
better understand their disease and treatment instructions, and so comply.
Outcomes would improve and we would avoid unnecessary expenses like ED
visits, re-testing and
re-admissions. That thinking led to much needed information-improvement
High demands of complex systems increase negative impact of
Recent policy documents acknowledge patient's ability to
understand and use information for health is determined not only by their
personal skills (or lack of them) but also by the demands and complexities of
healthcare systems  . That recognition is leading to initiatives to redesign
services and remove barriers to access and participation.
Literacy: A health issue
In a new leap forward in thinking about HL, the National Academy
of Medicine (formerly IOM) has released a discussion paper suggesting that a
person's HL is also determined by the demands and complexities of their home
and social context.  This makes HL a public health issue, a pre-requisite
for an equitable health system, and
key to reducing health disparities.
Healthcare organizations should lead adult & family literacy efforts
It is becoming clear that literacy is not just an economic issue,
but a matter of personal and public health. There is no getting around the fact
that health and literacy are inextricably linked. More literacy — more health, and more health
literacy. In communities where low
literacy is the norm, where high school graduation rates are low and schools
are poorly funded —these are the same communities with
high incidence of asthma, diabetes, cancers—, healthcare
organizations should establish, house and and actively support adult literacy
and family literacy programs. High returns can be expected from a relatively
low investment. Such a program can make good use of facilities that typically
are vacant in the evenings and on weekends; and provide good marketing
opportunities while building the community's capacity for health and making
participants more prudent healthcare consumers. A healthcare-based literacy program that incorporates health education and
health literacy improvement can make everything easier and more efficient for
the participants and for the organization that provides their healthcare.
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
disparities, low health literacy begin in poverty
Despite some encouraging news in the just-released annual
state rankings for child well-being, Annie E Casey Foundation reports large
numbers of children of all racial and ethnic groups are facing economic
conditions that can impede long-term success. In 2013 (latest figures) in the world's richest country, 22%
of all children
live below the poverty line —$24,250 annual
income for a family of 4. According to the Economic Policy Institute it takes
at least twice that amount to provide basic essentials. It's worse than the
average suggests. Here is where
health disparities begin: 39% of African American children, 37% of Native American children, 33% of Hispanic children
live in poverty. Compared to 14% of white children.
"When very young children experience poverty, particularly if that poverty is deep and persistent, they are at high risk of encountering difficulties later in life - having poorer adolescent health, becoming teen mothers, dropping out of school and facing poor employment outcomes."
Implications for health literacy improvement
These figures jumped out at me since preliminary findings
from my current research suggest that basic essentials —-
safe housing, adequate food, transportation, health insurance, and child care — are
prerequisites for developing maternal health literacy, mothers' ability to use
information and services to keep healthy and raise and healthy competent child.
It makes sense that no amount of reading skill, understanding of healthcare, or
knowledge of preventive practices can make those practices possible when
feeding the children necessarily takes priority. National and international
policy documents call for improving health literacy in parents to reduce health
disparities. Progress in unlikely until we provide health insurance and
economic supports to parents of very young children.
Cheers for the
Affordable Care Act
Thanks to Obamacare, the rate of insured kids improved 30%
leaving 7% or 5.2 million uninsured, most in states that declined to expand
Cheers for Alaska
Applause for Alaska governor Bill Walker. He announced last
week that he will use executive authority to expand Medicaid. That means nearly
30,000 Alaskans will soon be able obtain insurance. The annual Kids Count Datebook ranks Alaska 31 among the
states for child health. The governor's action bodes well for a higher ranking
in coming years.
Cheers for Minnesota
They're Number 1 overall in the Kids Count ratings, 2nd in
health behind Iowa.
Oh Mississippi! Worst place for kids. Still.
Mississippi ranked 50th overall as it has every year since
the rankings were first published in 1990. The state was last in economic
well-being, health, and family & community. It ranked 48th in education
ahead of New Mexico and Nevada.
See your state rankings here.
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
I’m proud of my city. We are catching up
with the rest of the world.
Yesterday Mayor Ed Murray announced Seattle will provide paid
parental leave for City employees.
All parents — foster parents, adoptive parents,
mothers and fathers— will have the option to take four
weeks off —with pay— to bond with a new child. The mayor is encouraging other
employers in the state to offer similar benefits.
This should not be the surprise, the bold move, the
breakthrough that it is.
The US is the only developed country on the planet that does not
give new parents paid time off to support attachment and bonding and infant
brain development, and to put their newborns on a positive health trajectory.
President Obama announced a similar new
policy to provide six weeks paid parental leave to federal workers in
his State of the Union address.
A step toward gender equity in the workplace
I’m especially glad the paid leave
policy will apply to fathers as well as mothers. That presents child care as a
shared responsibility. It puts to rest arguments and unfair choices that have plagued so many women’s
career…You are on the mommy track, so you can’t
be on the partnership track. The paid leave policy protects mothers’ earning
potential, avoids unfair expectations and burdens and removes that awful choice
between career and family.
Most of all, this investment in parents shows we are a society
that values its children, including adopted children and those in foster care.
It shows respect for the role of fathers in raising children, and the role of
mothers in the workforce. It
acknowledges the contributions of
foster parents — special people who can love other
people’s children as their own, and encourages
foster parenting. Thank you Mr Mayor and Mr President for leadership toward a
stronger city, region and society.
US residents speak at least 329 languages. In some US cities less
than 60% of the population speaks English. About 32 million of us speak a
language other than English at home. If your service population is not diverse
now, it will be soon. Pew Research
projects the US Spanish speaking population will triple by 2050, and the Asian population will double. Success
in improving the health of ethnic populations will substantially influence the
future health of America as a whole.
Healthcare organizations have been working to develop their
capacity to address language barriers and cultural differences, but it’s
hard to make progress when the challenge is increasing along with the
complexity of treatments and healthcare delivery and financing systems. Non-English speakers still face substantial communication barriers at almost every
level of the health care system.
show that communication barriers have a negative impact on health, discourage
use of preventive services, and increase costs of treatment through unnecessary
testing, delayed diagnosis, extended treatment times, and misinterpreted
instructions. Without information that they can understand and use in their
everyday lives, patients cannot engage in self-care or self-management. In
short, they cannot take responsibility for their health and be partners in treatment,
as effective care now requires.
In most cases, provider
organizations and insurers have the means to overcome language barriers. But
current practice in most communities still reflects an assumption that it is
the patients' obligation to make themselves understood, to ask appropriate
questions and to correctly interpret and comply with instructions. In most
instances, this assumption is wrong as a matter of law. Federal and state civil
rights laws and Medicaid regulations require access to linguistically
appropriate care. These laws are the basis for accreditation standards that
require providers and insurers to position themselves for our multicultural future.
Studies show that print
materials, particularly in combination with brief counseling, can increase
recall, compliance, and behavior changes; and reduce consultations regarding discomforts
that could be self-managed. Health information is increasingly available and
accessed online, through mobile devices and virtual patient educators. Still a
clear message from research participants
is that written information should always be available, even in the
presence of multiple other media.
While they are not a total
solution, CLAMs remain the necessary foundation for a comprehensive
communication effort, and an obvious starting place to promote health literacy.
Organizations serving diverse populations will need to hone a process to
develop and test English language materials, and to adapt essential proven
materials for non-English speakers.
More on that next time. Stay tuned.
Let’s welcome the new year with some new
thinking about measuring health literacy.
It’s hard to say exactly what electricity
is, but if the lights are on, we know we’ve got it. And we
measure electricity by the light it produces. So it is with health literacy. It
is hard to say just what health literacy is, but we know it by its
consequences, and we can measure those consequences.
Services utilization, behaviors, self-care
Two recent systematic reviews and concept analyses (Sykes 2013,
Sorenson 2012) identified the consequences of health literacy. Both studies found the most frequently
reported consequences of health literacy are improved use of services,
behaviors, and self-care. These consequences reflect how people use their
health literacy skills in everyday life and what they actually do for health with the information and
support available to them.
Although these consequences are supposed or anticipated rather than
evidence-based (Sykes 2013), the documented presence of these consequences
would indicate that the person possesses and has used health literacy skills to
produce them. Studies using the Life Skills Progression instrument to assess
maternal heath literacy are building the evidence base.
The LSP Maternal
Health Literacy Scales rate mothers health literacy by their health and
healthcare-related actions practices and behaviors. Sequential measures show
change —improvement or regression. The LSP Healthcare Literacy Scale uses 9 items to rate
mothers’ use of information, emergency services, medical and dental
care and preventive services for herself and her child. The Selfcare Literacy
Scale uses five items to assess risk behaviors and selfcare practices. Three published studies using LSP data on three different cohorts
of mother-child dyads provide
evidence that mothers supported by home visitors trained to promote maternal
heath literacy produced the consequences of health literacy at increasing levels
over 12-18 months. So the recent
analyses of the consequences of health literacy confirm earlier findings that
the LSP can be used as meaningful
measure of MHL.
Next: the recently identified unique consequences of critical
health literacy add weight to our theory that critical thinking skill,
particularly reflection, is the active ingredient in health literacy that enables mothers (and others) to
transform their decisions into health promoting actions and outcomes. Stay
K. Van den Broucke S, Fullam J,
Doyle G, Pelikan J, et. al. (2012). Health Literacy and Public Health: A
systematic review and integration of definitions and models. BMC Public
S, Willis J, Rowlands G & Popple K. (2013). Understanding critical
literacy: a concept analysis. Biomed Central Public Health:13:150.
Smith, S. A., & Moore, E. J. (2012). Health literacy and depression in the context of home visitation. Maternal and Child Health Journal, 16, 1500-1508.
Carroll LN, Smith SA & Thomson NR. (2014). The Parents as Teachers Health Literacy Demonstration Project: Integrating an Empowerment Model of Health Literacy Promotion into Home-Based Parent Education. Health Promotion Practice
pii: 1524839914538968. [Epub ahead of print]. Available on Internet at: http://hpp.sagepub.com/content/early/2014/06/23/1524839914538968.abstract
Mobley S, Thomas S, Sutherland D, Hudgins, J, Ange B & Johnson M. (2014) Maternal Health Literacy Progression Among Rural Perinatal Women. Maternal Child Health J 18: 1881-1892.
Beginnings Pregnancy Guide 9th Edition Sold Out
The second printing of the 2014 is underway. The scan code that instantly links Beginnings
readers to additional prescreened information via the Internet on a mobile device has proved popular. In a survey of pregnant women in SC, we found that respondents rarely use toll free numbers; while nearly all reported finding health information online. The entire website
is available on your mobile device.
Websites Continue to Grow
Beginnings Guides had 155,00 visitors in 2014. The Center for Health Literacy Promotion had 55,000 visitors. The blogs were read by 100,00 including 6900 reads in the last 30 days. And we have 1310 Twitter followers. Kudos to Beginnings Webmother, Simone Snyder.
Most read blogs
(this one was on the most-read list for 2013, too)
Promoting Maternal Health Literacy Nationally & Internationally
Free Health Literacy Training Videos
We produced a series of training videos in collaboration with the National Network of Libraries of Medicine Pacific Northwest Region. This from the National Libraries Website:
Center for Health Literacy Promotion offers free training
Together with the National Network of Libraries of Medicine, the Center for Health Literacy Promotion has put together three short training sessions on understanding and promoting health literacy designed for social and health services providers and programs. Each session includes a short video, a pre- and post-test (with answer key), a handout, and a facilitator's guide. All three sessions and their resources are available to download or view for free online.
To view these resources, visit the Center for Health Literacy Promotion:
Published Article: Parents As Teachers Health Literacy Demonstration Project
Carroll LN, Smith SA & Thomson N (2014). Integrating an Empowerment Model of Health Literacy Promotion into Home-Based Parent Education. Health Promotion Practice
pii: 1524839914538968. [Epub ahead of print] Read the article
Guest editor, Curationis Special Edition:
This turned out to be a monumental work and an inspiring labor of love. It was a joy and a challenge to work with a dozen authors whose work is at the foundation of efforts in southern and eastern African countries to develop professional education curricula and build a workforce of nurses dedicated to care of children. With health systems only about 20 years old, this work is underway to differentiate care of children from care of adults. Therefore, the articles focus on issues in professional education and practice. There are many lessons we in the US can learn from their work to build a healthcare system grounded in child rights, and to effect systems change in the face of racism and limited resources. Curationis, a South African nursing journal has published the special edition online with free access for all. It will appear in print in 2015.
HARC VI Washington DC Nov 4-5
Family transitions precluded my travel to DC this year. But I was not totally absent. Linda Wollesen, developer of the LSP presented in my stead results of a study conducted in collaboration with Anne Turner and colleagues at University of Washington Northwest Center for Public Health Practice. Conclusion: parents can and do manage child oral health, even in the face of poverty, low education and limited English proficiency where service and supports to use them are in place. This is on the list to publish in 2015.
New & Contintuing in 2015
Worldwide Universities Health Literacy Network
in Sydney I worked with an awesome group scholars/practitioners/patient representatives to instigate an international collaboration on promoting health literacy as a personal and community asset. The group has joined with others who began similar talks in 2012 at the first Worldwide Universities Health Literacy Network meeting in Southampton, and expanded to include representatives of countries in Europe, Asia, Africa , South America (and me). The collaborators have been holding monthly meetings via Skype and are developing funding proposals to address maternal health literacy globally.
CenteringPregnacy Health Literacy Trial
This project continues. I got to visit the site of the comparison group, Greenville Health System, Greenville, SC. We're searching for a second site. Want to be an intervention site? Contact me!
Maternal Health Literacy: Untangling the "Web of Interaction"
The research project for 2015 is funded by the National Library of Medicine. The study addresses an urgent need to determine what promotes maternal health literacy, especially in historically underserved poverty populations. We are identifying factors in the home and family context that influence mothers'health literacy, and how those factors interact. Understanding the context in which mothers use information and services for personal and child health can guide intervention design, tailoring and evaluation. We are looking for ways to visualize data to suggest points of intervention and help home visitors to answer the ever-vexing question: where to begin?
Start with measurement
What we measure and how we measure it
matters because it determines what we
find out about what works and what’s
worth doing and who should do it.* Measurement
remains the most crucial issue
for health literacy research
; because we need to find
out what works for
whom, and what’s
worth doing and who should do it.
especially interested in what works for mothers in
the prenatal to preschool
healthy population. What mothers learn about health and
during pregnancy and early parenting can benefit entire families
across their lifespans,
and extend benefits to the healthcare, education and
justice systems, and to the economy.
Health literacy focuses on patients
understanding healthcare information
Health literacy research assesses
literacy by their scores on a single
administration of a reading test using
medical terms. Patients are marked poor, marginal
or adequate. An
adequate score means you will probably not need assistance to make
information about your diagnosis
or to follow treatment instructions.
you cannot pronounce most of the words, you are assumed to have poor health literacy
and to be
unable to “obtain,
process and understand basic information needed to make
What we find out from health
literacy-reading test scores is that almost everybody has
vocabulary and difficulty making sense of information from the healthcare
system. We find out that information needs to be simplified and its delivery
needs to be
improved. We find that patients score better when we give them
better information and
conclude that what’s
worth doing is improving information and its delivery. Since most
studies originate in
academic medical centers, it is not surprising that studies position health
professionals as the keepers and dispensers of health and medical knowledge and
so it falls
to them to reduce the risk and mitigate the negative impacts of low
[health] literacy on
patients and the system.
Maternal health literacy focuses on
parents using information for health
Maternal health literacy research
assesses periodically what parents do with information,
how they integrate it
into their lives and households. Changes in parent’s
healthcare-related actions, practices and behaviors provide
evidence of progress (or
regression) in developing the knowledge and social and
cognitive skills needed to participate
in healthcare and preventive practices.
This approach captures effects of systems efforts to
improve information as
well as public health efforts to directly assist parents to make meaning
the information and apply it in real life.
By monitoring what parents actually
do for health with the information available to them, we
find out that direct
assistance to use information and services for health is most beneficial to
lower functioning parents, while also benefitting higher functioning parents.
We find that social
workers, parent educators, health educators, and trained
paraprofessionals working in homes
and communities can enable parents to better
manage family health and healthcare, even with
the added challenges of poverty,
limited education and limited English proficiency.
Both approaches are needed
The dominant clinical approach to
literacy and the public health approach to
maternal health literacy are
complementary rather than exclusive. Patients and parents need
information, accessible services, and assistance to use them effectively.
schorr Common Purpose: Strengthening Families and Neighborhoods to Rebuild
Read this book!
Social media and the NFL are enabling us to
reflect together on what level of aggression and violence in family
relationships is acceptable in our society. It's a fitting although
inadvertent role for the NFL, whose players are de facto role models for
American males, and whose recruiters, coaches and fans place high value on
aggression and violence on the field. (Here is Seattle, we love the defense in
Beast Mode - on the field.) The NFL's position on aggression at home is, well, evolving.
Thanks to the inventors and users of social media.
There seems to be consensus that child
abuse is unacceptable, and discipline is necessary. But the line between
discipline and abuse is defined by a complex and dynamic web of personal
beliefs, local culture, and state laws.
What is abuse?
It depends who you ask and where you are. State law
is largely focused on protecting parents' rights, and keeping the family free
of government or social interference. Social workers focus on protecting the
child from parental excess. The courts aim to balance parents' rights with
children's welfare. There's controversy regarding how much weight should be
given to potential effects on children's social and emotional wellbeing and
healthy development, on what is "normal" in the child's community, on
potential future harm, on how well the punishment fits the infraction, on a
pattern of parental behavior.
State laws are intentionally vague about what
constitutes abuse, so that cases can be decided on an individual basis.
The laws and their approaches to defining abuse vary widely. Interpretation on
the ground varies by agencies and individuals. This can result in a "I
know it when I see it" understanding of child abuse. Judging by the
Twitter traffic around Adrian Peterson, people who view the same video evidence
interpret it very differently.
How to decide?
Ultimately, parents must decide whether, when
and how to discipline their child. To me there are two important things to
bring to mind when discipline is in order. First, every young child wants to
be, tries to be like his or her parents. And every parental action teaches the
child some lesson, by default or by design.
A clear distinction for me is that disciple
is teaching by design.
It intends to teach the child appropriate behavior
and right action. Abuse is teaching by default, it aims to punish inappropriate
behavior. As a parent, the question to ask when provoked by a preschooler, or
any child, is what do I want to teach now?
Adrian Peterson said he wanted to teach his son
to be respectful and not curse at playmates. But his preschooler did not make
up those swear words. He learned them from someone he is trying to be like. And
hitting a person with a stick is about as disrespectful as one can get.
Peterson left a scar on his 4-year-old's head, which he said the child
could have avoided by not trying to get away. Would you try to get away
from a brawny footballer coming after you with a stick? I sure would. Would you
think he was abusing you or that he was teaching you appropriate social
Consider what that boy is going to say to
himself as he grows up looking in the mirror at his scar? "I want to
be respectful and polite like my dad". Probably not.
This from Beginnings Parents Guide