Center for Health Literacy Promotion Blog
What causes disease?
For 200 years, Western medicine has worked from the idea that health is the absence of disease. The overarching question for medicine and healthcare has been What causes disease? And despite the name, healthcare has always been about treating disease. Early on, care and research focused on germs and infectious disease; later , following the research, focus shifted to genes and risk factors for chronic disease. Although it is now widely accepted that health is more than the absence of disease, Public Health, and even the relatively new field of Health Promotion, still maintain a steady focus on reducing disease risk factors. It’s time for a new question.
Prerequisite for Health:
- Stable eco-system
- Sustainable resources
- Social justice
Research has answered, in broad terms, the centuries old question.
The roots of disease grow deeper and earlier than germs or genes and
risky lifestyles. It is well-established that health and disease originate in early development, in the “zero to three”, prenatal to preschool period. The combination of Nature (genes & germs) and nurture (early parenting and environment) in the earliest months and years of life establish the foundation for all that follows: how susceptible we are to disease, how resilient we are, and further, how we learn, make friends, cope with challenges, and get what we want.
Research breakthroughs have given health a new broader meaning that is expressed and accepted more internationally than in the US. See the
It is now clear that health and disease originate in early development; and that health, like disease,develops over time and its trajectory can be influenced, especially during fetal and early child development and other critical periods of development. That understanding demands that we flip the overarching question to ask, What causes health? And to flip the concentration of resources from end of life care to maternal and child health promotion.
What causes health literacy?
Most health literacy research has taken place in US academic medical centers under the old overarching question asking, What is the role of low literacy in disease? It is important to note that this research
also uses an outdated understanding of literacy as reading ability. This line of research has established that few Americans understand medical terminology and nearly all of us have difficulty following complex
medication regimens and navigating the complexities of healthcare and insurance.
If we start with the new overarching question: What causes health?, then a more actionable question for health literacy promotion is What will empower this person to use information and services for health?
The answer, that which empowers a person to use information and services for health, is health literacy. Better information is necessary, but rarely sufficient. Look to the Prerequisites for Health (above) to see
other factors necessary to develop health and health literacy.
Antonovsky A. (1996). The salutogenic model as a theory to guide health promotion Health Promotion
International 11 (1);11-18
Halfon N, Larson K, Lu M, Tullis E & Russ S. (2014). Lifecourse Health Development: Past, Present and Future.
Maternal Child Health Journal 18:344-365.
Nutbeam, D. (2008). The evolving concept of health literacy. Social Science & Medicine, 67, 2072-2078.
Shonkoff, J. P., & Phillips, D. (2000). From neurons to neighbourhoods. The Science of Early Childhood
Development,: National Academy Press: Washington DC.
The third era of healthcare
It started in the 1980s. Epidemiologists —they study how disease is distributed and controlled— realized that events and experiences we have in the womb —before we are even born—influence our health in middle age. Discovery of the “Developmental Origins of Health and Disease (DOHAD) is what they mean by landmark research; it marks a turn that requires a new way of defining and measuring health, and a second transformation of healthcare services.
Halfon and colleagues trace the evolution of healthcare from the first era —1900-1950— when medical and health systems focused on germ theory and acute care of infectious disease. Around 1950, gene theory and social research led to bio-behavioral theories that said disease results from the interaction of genetic make-up and adult health behaviors. So the second era of healthcare refocused thinking and resources on chronic disease. Health promotion tried in vain to change adults’ risky behaviors. Later researchers recognized that gene networks interact with each other and the environment in complex and dynamic ways that influence how our bodies and minds are engineered and re-engineered to function in our environments. This is when we started talking about the social determinants of health.
By 2000, the synthesis of biological, behavioural and social sciences led to the slowly emerging third era of healthcare where your doctor will focus less on chronic disease diagnosis and treatment and more on lifecourse health development. The goal of Medicine will be to optimize your health
trajectory — the way your health plays out across your lifecourse, from preconception through infancy, childhood and on to old age.
Thought leaders now are talking about health as a capacity—an ability or power to understand, experience of do something. Health is used to achieve one’s potential and accomplish one’s goals.
Clarifying the Health-Literacy Link
The evolved concept of health is strikingly similar to current descriptions of literacy as an ability used to achieve ones potential and accomplish one’s goals, to function in some social context. In other words, you’re healthy and literate when you function — interact successfully— with your environment. We could say further, you are health literate when you interact with your environment in ways that optimize your health.
Context Matters. Embrace Complexity
Transition to the third era of health care requires refocusing heath literacy research and practice on the environment in which health and disease develop, that is, on the context in which people make meaning from information and use it for health and healthcare decision making and action. The goal of health literacy promotion for the third-era is to optimize a person’s or a community’s health trajectory. That means we need to be promoting maternal health literacy earlier —preconception.
Repositioning Maternal-child Heath
Further, the rapidly increasing understanding of DOHAD —the developmental origins of health and disease— positions maternal-child health at the foundation of personal and public health and at the center of an evolved third-era healthcare system. It makes maternal health literacy the foundation of a health literate society.
That’s why I am working on ways to use data to understand the contexts in which maternal-infant health and maternal health literacy develop. Successful efforts to untangle the web of interactions that influence the health trajectories of a mother and her child may answer the health literacy promoter’s essential question: Where to begin? Stay tuned.
Halfon N, Larson K, Lu M, Tullis E & Russ S. (2014). Lifecourse Health Development: Past, Present
and Future. Maternal Child Health Journal 18:344-365.
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. I’m especially interested in what works for mothers in the prenatal to preschool period. Because they are the foundation of personal and public health. Healthy mother… healthy baby… healthy population. What mothers learn about health and healthcare 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 patients’ health 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 meaning from information about your diagnosis or to follow treatment instructions. If 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 appropriate health decisions”.
What we find out from health literacy-reading test scores is that almost everybody has limited medical vocabulary and difficulty making sense of information from the healthcaresystem. We find out that information needs to be simplified and its delivery needs to beimproved. We find that patients score better when we give them better information andconclude 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 health- and 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 from the information and apply it in real life.
By monitoring what parents actually do for health with the information available to them, wefind 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 patient’s health literacy and the public health approach to maternal health literacy are complementary rather than exclusive. Patients and parents need quality information, accessible services, and assistance to use them effectively.
* lisabeth schorr Common Purpose: Strengthening Families and Neighborhoods to Rebuild America.http://lisbethschorr.org Read this book!
The morning was chilly, definitely
fall in the air. I turned on the
furnace. It seemed to take a while
but the house warmed up. Just as I
noticed my nose was no longer cold, a
contractor doing repairs on the exterior reported with some alarm the
smell of gas around the furnace exhaust. I turned off the heat. Two days later
the scene repeated itself. The previous residents could not recall any problem
with the furnace, or ever having
I called a local heating company.
The tech walked in the door,
sniffed the air, and immediately pulled out his hand-held CO - carbon monoxide
- monitor. His eyebrows went up.
He ordered all the windows and doors opened. Then he went outside to get a reading at the exhaust vent.
He left the area when the reading got to 260 - more than 10x the standard.
What you don’t know can hurt you
Would this explain my headache
that won’t go away, I asked. Yes. And dizziness, drowsiness or
a lightheaded sort of flu-like feeling - early signs of carbon monoxide
poisoning. That’s what kills a person who sits too long in a car in
the garage with the motor running.
Turns out the furnace heat
exchangers - whatever those are - had cracked, probably years earlier causing
the furnace to leak moisture and over heat. It had been deteriorating,
gradually producing less and less heat with more and more gas.
never thought about the furnace beyond the thermostat. I took for
granted that it protected my health by providing heat in the winter. It never occurred to me that it could be
Use information and services in
ways that enhance health.
the definition of health literacy. With many households switching to affordable
gas heating and appliances, keeping healthy requires new awareness. Here’s information I learned about maintaining gas
appliances that you, and families you serve, can use to protect and enhance
health this winter.
Get a CO
monitor. If you have any gas
appliances get a monitor. Building codes now squire them in new construction.
If you have a gas furnace put one in each bedroom. I got a model that’s
guaranteed for 10 years for $23 at WallMart. It plugs in to any outlet. The
alarm sounds if the CO level reaches 70 ppm -parts per million - the
point when most people start to feel symptoms. For a little more money you can get a monitor that shows the
ppm . For a bit less, there are battery powered monitors, but you have to
monitor the battery.
If the alarm sounds, get to fresh
air and call 911.
furnace checked annually- a great way
to mark Health Literacy Month each October. The local heating company charges
$109 to check the system including the ducts. The new furnace I bought cost
$4500. If the furnace had been checked annually for the last 20 year that would
have cost a total of $2180.
filter every six months. My local
heating company provides free filters and will change them at no charge 2x a
year. Does yours?
smell gas, do not ignore it. Turn off the appliance. Open doors and windows. Call
for service to the appliance. Do not wait for the alarm to sound.
numbers. CO level at the furnace’s exterior exhaust should be < 24ppm (parts
per million). The level in front
of a gas fireplace should be < 9ppm. My fireplace tested at 30ppm. It is off. It will be
Discipline or abuse?
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:
Translating research into practice is a challenge for all practitioners. We could call
literacy” - ability to obtain, understand, evaluate and use research to make
treatment and policy decisions. How can clinician/educators of healthcare
professionals enable new clinicians to use research to challenge current
practice and provide evidence-based care? How do you implement changes to long
standing curricula, evaluation procedures, and teaching methods? How do you
capture the richness of diversity and overcome its challenges? Those are
questions faculty, staff and students of University of Cape Town School of
Nursing have been actively wrestling with in recent years. The questions guide
their research which is “relevant to and directly transferable to local and
resource-constrained practice settings”.
Learnings to be published soon
I know this because I am guest-editing a special
edition the African nursing journal Curationis.This work, like the special edition itself, is an outgrowth of one of my all-time
favorite gigs - keynoting the first, totally awesome and inspiring, conference
on Building Children’s Nursing for Africa held
April,2013. (Consider participating in the second conference April 22-24,
2015.) So I get to read all
the articles and shepherd them through the publication process. What an
education i am getting! The issue
is shaping up nicely. I think it is going to valuable to all nursing and
medical educators working with diverse student bodies or training professionals
to serve low-resource populations.
If you are hit
by a car going 20 miles an hour, you have 95% chance of survival. If the car is
going 30MPH, your chances drop to 55%, says Harborview
Injury Prevention & Research Center in Seattle. That is why signs in school zones say “Speed Limit 20”. It’s a national public health effort to reduce accidents
and injuries. A health literate driver would comply.
The Seattle Times reports a local driver had his $189
ticket for speeding through a school zone dismissed.
The judge agreed with his argument that too many words on the sign made it hard-to-impossible
for drivers to read in time to slow down. The driver cited the federal Manual on Uniform Traffic Control Devices, which
specifies fewer words. The City vows new
signs will adhere to the manual.
Wednesday, May 21 at 10AM, the start of the 217th CenteringPregnancy group at
Greenville Health Systems OB-Gyn Clinic in Greenville, SC. As participants
arrived, one with a friend, one with her cousin and her mother, one with her
husband, others on their own, Nora, an assistant facilitator, greeted them and gave them supplies to
make their name tags. She showed
each mom the routine for the first 30 minutes of each Centering session: Take your blood
pressure like this; record it here. This is what the numbers mean… Weigh
yourself; record it here. When she calls you, have a private visit
and brief exam with Vicki,
the nurse practitioner. Have a
snack, visit with other participants, or ask the midwife a private question.
Then for the next 90 minutes the
group of 9 expectant, mostly first-time mothers sat in circle with their supporters and three
facilitators, and me, the visitor there to learn about Centering. The initial
awkwardness faded quickly.
self-introductions and a lively, laughter-punctuated discussion of current
issues from morning sickness to cravings to farting; a basket of plastic food
items was passed around and we took turns talking about the items we chose. “So will you eat that during your pregnancy?”, Nora asked the group gesturing to the chocolate
dipped ice cream cone. Yes, the
group decided —after all
it is summer in SC. But not every day; as a special treat because it’s loaded with sugar and fat. At closing we each said
one thing we were going to do to stay or get healthy during this pregnancy… walk, drink water instead of sweet tea, try eating
CenteringPregnancy promote maternal health literacy?
opening session was also the kickoff of the CenteringPregnancy
Health Literacy Trial, although the group will not hear about until
their next session. The trial aims
to assess the capacity of CenteringPregnancy to promote maternal health
literacy and empowerment. A secondary aim to is validate the Maternal Health
Literacy Self Assessment designed for the project. We anticipate that the Centering model promotes mothers’ health literacy and health empowerment by supporting
knowledge gain and changes in health behaviors and healthcare utilization
practices. Previous studies have shown that social support from home
visitors is a catalyst for improved health literacy. In those studies, visitors
were trained to “Teach by Asking”, that is to ask reflect questions instead of
delivering health education. In Centering, rather than teaching and informing,
facilitators ask questions to elicit the group wisdom. The group provides
luck of the draw, about 120 pregnant women participating in CenteringPregnancy at
this Greenville clinic will comprise the comparison group in the trial; other
than completing the Self-Assessment, they will receive “usual care” in the
CenteringPregnancy model. An equal
number of participants at a second site will incorporate Beginnings
Pregnancy Guide into the program along with the Self-Assessments. We will
see if providing additional information promotes health literacy more than “usual care”.
tuned for more on the Maternal Health Literacy Self-Assessment.
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
Learn the deeper meaning of
Mothers Day here:
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 Guideusing 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
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.”
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
Organization: 97% Layout/Design: 96% Visual Aids: 96%
"Overall the book looks and reads very clearly and will be
understandable for a low level reader.”
(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.
additional plus is the links to other resources for specific topics.”
Detailed results are displayed in Tables 1 and 2. Table 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
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. SeeTable 4.
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
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