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A New Improved Definition for Health Literacy: Rx to end confusion?
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Health Empowerment: the act-ive ingredient health literacy

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, 
which I’ve described previously as The Three-Step Dance

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)

Further Reading 
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


The Power of TED by David Emerald - YouTube  https://www.youtube.com/watch?v=t5hSa16FX94

Time to Acknowledge our Biggest Barrier to Health & Health Literacy

Can you name it?
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 Childhood Experiences. 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. 
 
But, after 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. 
 
Early years 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 household member
* illegal street or prescription drug use by a household member
* 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.

With 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.
 
Resources & Reference:
 
This from Beginnings Guides Tools for Serving Families  http://www.beginningsguides.com/Tools-for-Serving-Families.html

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 
Read the researchwww.acestudy.org
  
View Dr. Burke Harris’ TED Talk “How  childhood trauma affects health across a lifetime”

Next: How we can use information about Adverse Childhood Experiences

Improve Health Literacy in Poor Communities: Start a literacy program

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.[1], 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. 

Workers' low 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 initiatives.
 
High demands of complex systems increase negative impact of low skills
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 [2] . 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. [3] 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.

Improve Health Literacy in Poor Communities: Start a literacy program

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 attention from economic downturns, most recently in 1991 by GH Bush [1], that campaign produced 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 healthcare organizations, doctors, pharmacists, and health insurers. The first health literacy studies in the medical literature came out in 1993. 
 
Workers' low 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 initiatives.
 
High demands of complex systems increase negative impact of low skills
Recent policy documents acknowledge patients' 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 the healthcare system [2]. That recognition is leading to initiatives to redesign services and remove barriers to access and participation.
 
Health Literacy: A health issue linked to individual & community context
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 intrinsically linked to an individual’s and a community’s socio- economic context, and is a powerful mediator of the social determinants of health [3].  This suggests health literacy is strongly influenced by the demands and complexities of the home and social context. It makes HL a public health issue, a pre-requisite for an equitable health system, and key to achieving health equities. At a recent IOM workshop, experts discussed the role of the social determinants of health in health literacy and the need to move health literacy intervention into the community [4]. (Can you hear me applauding?)
 
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 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.
 
References
1.     Hourigan, M.M. (1994). Literacy as social exchange: Intersections of class, gender, and c Albany, NY: State University of NY Press.
2.     Logan, R. (2015). Health literacy research’s growth, challenges and frontiers in C. Arnott-Smith and A. Keselman (Eds.). Crucial conversations: Meeting health information needs outside of healthcare. New York: Chandos, In Press.
3.     Health Literacy: A Necessary Element for Achieving Health Equity. Robert A. Logan, Winston F. Wong, Michael Villaire; Gem Daus,Terri Ann Parnell, Earnestine Willis & Michael K. Paasche-Orlow, Full text at: http://nam.edu/perspectives-2015-health-literacy-a-necessary-element-for-achieving-health-equity/   
4.     Health Literacy: Past, Present, and Future: Workshop Summary. Joe Alper, Rapporteu. This PDF is available from The National Academies Press at http://www.nap.edu/catalog.php?record_id=21714
 





Should Europe be Thinking about Health Literacy Now?

Europe can now see itself as a casualty of the self-proclaimed Islamic state. Terrorized families are being fired at them like ammunition.  Europeans are suffering the personal, social, economic, political, spiritual, religious, moral, financial, public health and healthcare stresses of finding hundreds of thousands of individuals and families on their door steps.  The situation would be challenging even if these were happy families on holiday.  But the arrivals are in crisis, terrorized, grieving, sick, hungry destitute and desperate.— and they are not going home.  To further complicate matters, likely lurking among them are smugglers, criminals, terrorists, and recruiters of new terrorists ready to take advantage of disruption and vulnerability.
 
Europe's health systems will be hard hit, especially mental health services. The children have been exposed daily to ACEs- Adverse Childhood Experiences - that will have lifelong effects. Adults have lost everything that tells them who they are and how to be- their countries, towns, schools, places of worship, neighbors, friends, family, jobs, credentials, status, their whole range of resources and solutions. Their coping capacity was likely used up before they arrived. The conditions for recovery — safety, quiet, comfort, privacy — do not exist. Then there are the language barriers and cultural and religious tensions.
 
What would happen if the 250, 000 refugees and immigrants who flooded into Greece this year arrived instead on the shores of Alabama? The state is  roughly the same size as Greece, but has half the population.  Like Greece, Alabama has high rates of poverty and xenophobia, and limited healthcare resources. Would we see the famous southern hospitality, or a wall?
How does a health literate organization, community, or state respond to such a barrage of challenges?
 
Can we even think about health literacy in such a crisis. Should we?
 
More than ever.  As a matter of social justice. As a matter of public health. My research suggests priority needs to be on basic essentials; because adequate housing and food and are pre-requisite to learning a new language and recovering enough from trauma and ordeal  to think about obtaining and using information and services to regain health.  Next, scale up adult and family literacy programs that integrate health education.  Hospitals should lead this effort; it will make everything else they do easier, more efficient and effective.  Scale up training of health educators, medical translators, public health nurses. Scale up cultural competence training for all health and social services providers.
 
Looking through a health literacy lens at Europe's responses to the refugee crisis, we might learn some strategies for healthcare systems facing new levels of diversity and xenophobia, socio-economic and health disparities, and unprecedented numbers of  poor, inexperienced patients with language barriers and a backlog of medical needs. If we can understand and act on what we learn, we could get closer to our vision of a health literate society in which no one dies for lack of information and the support to use it.
 
 

 

What should be the core conversation between a doctor and an individual s/he sees for 15 minutes per year?

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 Confusion.  A summary of the workshop proceedings was released this month. Download a summary of the workshop 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: What 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 question than ‘what hurts’ or ‘have you been taking your medicine today.’”

Why is this question more important than typical problem-focused inquiries?

It's empowering.
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 actors 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, rather than reducing the person to a medical problem and assuming that s/he has failed to comply with the medication regimen. 

What is a good day like for you? is a good reflective question.

> 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 about 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 not expected 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 for the provider to achieve patient satisfaction.

> It shifts thinking and conversation from what patient and clinician do not want — disease and suffering— and 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 those who live in poverty and face daily discrimination, are rarely asked questions and may be trained not to think.  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 fill 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 services.

More on reflective questioning
Reference & further reading:

J. Michael McGinnis, Pamela Williams-Russo and James R. Knickman The Case For More Active Policy Attention To Health Promotion Health Affairs, 21, no.2 (2002):78-93 doi: 10.1377/hlthaff.21.2.78   Full text online at http://content.healthaffairs.org/content/21/2/78.full.pdf

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In response to The Arc of Health Literacy, a Viewpoint published in JAMA online August 8, 2015.

From the Opinion:
Over the past 2 decades the lens of health literacy has widened greatly. In addition to focusing on the needs of individual patients, the field now brings the promise of greater commitment and shared responsibility from clinicians, institutions, and care systems.

With the highest respect for Drs Koh & Rudd,  I propose the lens is not widened enough to achieve national health goals.

Historically, heath literacy has not focused on the needs of patients so much as on their deficient reading skills and limited medical vocabulary and the risks and costs those deficits present to clinicians, institutions and systems.  The health literacy lens has widened,  but not enough to capture the full picture. The frame now includes clinicians and their contexts — institutions and system. This is important and necessary. But the picture still excludes patients' contexts - their lives beyond the clinical encounter; for the average American that's all but about one hour per year spent in a healthcare setting.  If health literacy  is to achieve its promises of  healthcare quality and health equity, the health literacy lens must widen enough to include the social determinants of health.

When the lens is turned inward so that we only see individuals as patients, it looks as if the problem is a combination of their low literacy and healthcare's demands and complexities. It looks like health literacy skills are only used or needed in clinical settings, (and secondarily in epidemics or disasters).  It looks like the solution is better information — more explanation of the jargon, clearer instructions, more readable medication labels.  It looks like taking the right medication at the right time, managing diabetes, and following discharge instructions are "routine tasks".  It looks like the problem is in patients and the solution is in clinicians, institutions, and systems.

The authors mention that national health goals mandate efforts beyond the walls of patient institutions to reach people in the community.  But the lens has not widened far enough to see health literacy in everyday life at home and in the community where health information is interpreted and used or disregarded. The focus is still too narrow to see what besides reading ability and quality of information  determine how and how well individuals manage the "routine tasks" and episodic challenges of keeping healthy and caring for others. The lens is still too clinically focused to see what besides improving information and its delivery might be worth doing and who besides clinicians might do it. 

Wild applause to all in health literacy for widening the lens to recognize that systemic problems in healthcare do not belong entirely to the patient.  Now let's open the lens further to see individuals as more than patients in exam rooms so we can keep bending the arc of health literacy toward population health and health equity.

Read the "Arc of Health Literacy" free online from JAMA.
 
Better information is certainly important and necessary, and also insufficient to enable patients to benefit from healthcare services.
Greater commitment and shared responsibility on the part of clinicians and institutions also is welcome and necessary. But we are still missing an essential element for achieving the national vision of a health literate society. The authors suggest that healthcare systems form  partnerships to reach people of all ages and backgrounds in the community as well as in the clinic setting.
 
The arc of health literacy now needs to move beyond its focus on improving information to improving capacity to use information and services for health.

2015 Kids Count Child Well-Being Report Released

Health 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 Medicaid
 
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.
 
 
References:
Economic Policy Institute. Family budget calculator. www.epi.org/resources/budget/  



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