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Shanghai Declaration on Health Promotion: Strengthen Health Literacy
Update Health Literacy Research for the Third Era of Modern Healthcare
What does mothers' health literacy have to do with disparities?
Affordable Care Act Review by the Numbers
Short answer to Why promote parents’ health literacy?: DOHaD + SDoH = HL


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Shanghai Declaration on Health Promotion: Strengthen Health Literacy

Sustainable Development Goals Depend on Health Literacy improvement
The 9th Global Conference on Health Promotion takes place in Shanghai November 21-24. The conference is expected to endorse theShanghai Declaration on Health Promotion. The declaration establishes health promotion, particularly health literacy improvement as essential in development and implementation of theSustainable Development Goals (SDG) for 2030The SDGs replace the Millennium Development Goals which expired in 2015.  If endorsed by the conference, as expected, the declaration will be proposed to the third United Nations General Assembly High-level Meeting on Non-communicable Diseases (NCD) in 2018.
The Shanghai Declaration on Health Promotion is the second global call for action to “strengthen heath literacy” worldwide; and thereby to improve health and well-being and empower women. It  builds on an earlier Shanghai Declaration adopted by the United Nations General Assembly in 2011. Both declarations present health literacy improvement as a pragmatic intervention to reduce NCD—now the leading causes of death worldwide, and a leading source of health inequities and disparities.
UN members that sign on to the declaration will commit to develop national plans and funding for regular health literacy surveys to build the evidence base and make global comparisons.  This population approach is seen as part of a necessary “whole-of-government and whole-of-society” commitment to health and sustainable development.  Definition and measurement of health literacy across cultures and health systems will be the major challenge, particularly for the US which remains focused on individual patients’ reading skills.
Signers will further commit to make healthcare institutions more understandable, friendly and people-centered by setting standards for health literate organizations. The US has much contribute in this regard with the National Action Plan to Improve Health Literacy and  the Health Literate Care Model. What’s missing is the funding.
The Shanghai Declaration on Health Promotion prioritizes health literacy as “a critical entry point to make a difference… through the settings of everyday life and people’s capacity to increase control over their own health and its determinants.”  Health literacy in everyday life and health literacy as empowerment have been the focus of my research. While these concepts are fundamental to health protection and promotion, and to prudent use of services; they are  outside the dominant prospective on health literacy in the US.
We each use our health literacy skills in three domains: disease treatment and healthcare, disease prevention/health protection, and health promotion. I urge the US delegation to sign on to the new Shanghai Declaration. I urge all health literacy researchers and practitioners to expand our thinking about health literacy by reading the declaration and reflecting on what action you could take to strengthen health literacy for health promotion?

Read the declaration in English, Chinese, French, Spanish or Russian here.

World Bank. Empowerment. PovertyNet. Retrieved 6.15.16
Kickbush I, Pelikan JM, Apfel F, Tsouros AD (Eds.). Health Literacy: The Solid Facts. World Health Organization, Copenhagen; 2013. Retrieved 10.4.16.

Update Health Literacy Research for the Third Era of Modern Healthcare

Part 1 Three Theories at the Foundation of Health and Health Literacy
To respond to increasingly urgent national and international calls to improve health literacy, research and practice must originate from current scientific understanding of health and literacy. First consider concepts of health.
DOHaD: Developmental Origins of Health and Disease
Healthcare systems, and health literacy research, have been slow to respond to the conceptual convergence and empirical evidence that have ushered in the third era of modern healthcare and with it, the emergence of health literacy improvement as a pragmatic intervention to promote health and reduce disease and disparities worldwide.

The first era of modern healthcare (1900s) grew out of germ theory and understanding of health as the absence of disease. Practice aimed to achieve survival from infectious diseases. The second era (1950 —) began with discovery of gene theory and understanding of health as a combination of genetic makeup and adult lifestyle choices. First-era practice was overlaid with chronic disease treatment and emphasis on quality of life, patient activation, informed consent, and self-care. The current third era of modern healthcare began around 2000 with the convergence of theory and research from multiple fields into under-standing of the Developmental Origins of Health and Disease (DOHaD)
LCHD: Life Course Health Development
Understanding of DOHaD led to a nuanced concept of health as constantly developing and socially determined. Life course health development theory describes how health and disease originate in early development in utero and childhood and follow a trajectory through increasing function in adolescence, to maintenance of function in adulthood, to decline in old age.  Health literacy challenges and tasks evolve along the same trajectory, so that a person's or a community's health literacy progression is lifelong and evolving.
SDoH: Social Determinants of Health
The Social Determinants of Health are factors that determine whether and how developmental predisposition to adult disease is expressed.  Health influences and is influenced first by our parents' and then our own income, education, nutrition, transportation, and physical and social environments including healthcare access and health literacy .  SDoH also are determinants of health literacy.
Implications for research
Health literacy research grounded in these theories would view health literacy as constantly developing and socially determined. It would  put maternal health literacy at the forefront, and focus on intervention to promote health literacy over the life course for disease prevention and health promotion as well as disease treatment and healthcare. It would expect and measure improvements in risk behaviors, preventive practices and health services utilization as the outcomes of interest.
Next: Part 2  Theories of literacy and health literacy

1 Wadhwa P, Buss C, Entringer S, Swanson J. Developmental origins of health and disease: Brief history of the approach and current focus on epigenetic mechanisms. Seminars in Reproductive Medicine. 2009;27(05):358–368. doi:10.1055s-0029-1237424
Halfon N, Hochstein M. Life course health development: An integrated framework for developing health, policy, and research. Milbank Quarterly. 2002;80(3), 433-479.
Wilkinson, R. G., & Marmot, M. G. (2003). Social determinants of health: the solid facts. World Health Organization.

What does mothers' health literacy have to do with disparities?

National and international policy documents frame improving health literacy as a pragmatic intervention to reduce health disparities. But what links health literacy and disparities?

Since the social determinants of health shape parents' health and health literacy, which in turn shape their children's early development and adult disease; health disparities start even before birth and perpetuate. Therefore, health follows the social gradient and disease concentrates among the disadvantaged. Improving maternal health literacy,  and in the process empowering disadvantaged mothers, can reduce disparities by enabling mothers to better reduce risk, maximize protective factors, and obtain the benefits of health and social services.  

Further, mothers make 80% of health care decisions for their families, take them to appointments (84%) and ensure they get recommended care (79%).  The LSP health literacy studies  indicate that mothers retain and hone their improved skills. 

Furthermore, by default or by design, mothers pass their skills —whatever they are— to their children in the course of everyday interactions. For these reasons, it is a logical health and financial imperative to make maternal health literacy the first  priority in health literacy research and intervention that aims to reduce disparities and future burdens of chronic disease.
Ranji U & Salganicoff A. (2011). Key Findings from the Kaiser Women's Health Survey, Kaiser Family Foundation
US Dept of Labor General Facts on Women and Job Based Health (2013)

Affordable Care Act Review by the Numbers

The ACA was enacted in 2009. Implementation began in 2010. Big improvements despite resistance. More to do.
43  Percentage reduction in the US the uninsured rate since 2010.
20,000,000 Newly insured under the ACA
55,600,000 Women who gained access to contraceptive coverage, screening and counseling for interpersonal  violence.
$20 Billion  Amount seniors saved since 2010 closing of the prescription coverage gap.
< 0 Annual growth in per-enrollee Medicare spending 2010-14
1.1  Percent annual growth in private insurance spending since 2010 (vs 6.5% 2000-5
28  Percent by which CBO* has reduced it projections of Medicare costs for 2019
474,700 Healthcare jobs created in 2015. Healthcare employs 15.3 million
9 Percentage of Americans uninsured in 2015
29,000,000 Still uninsured
19 States whose Republican governors refused Medicaid expansion
60 Congressional attempts to repeal the ACA
Source: Obama B. (2016). Us Health Care Reform: Progress and Next Steps. Journal of the American Medical Association 316(5). Free online. DOI: 10.1001//jama.2016.9797

Commins J. (2016, Jan 12).Healthcae Job Growth Sets Record in 2015. HealthLeadersMedia

*CBO: Congressional Budget Office

Short answer to Why promote parents’ health literacy?: DOHaD + SDoH = HL

“The building blocks of good health have their foundation in social and emotional skills learned during early childhood,” 
Natalie McGill, The Nation’s Health, August 2016
 Health literacy is one of those building blocks for good health that develops from social and emotional skills learned in infancy and toddlerhood. Building blocks for heath and health literacy are emerging life skills that enable individuals to deal effectively with the demands and challenges of everyday life: problem solving, planning ahead, considering consequences, taking turns,asking questions, listening, providing information, getting help, learning from experience.

Lucky children learn these skills early from everyday interactions with their parents,  and then in preschool through daily routines, games, stories, conversations and planned and impromptu learning activities. 
Before they learn to read, lucky children learn to apply their emerging social and emotional skills to protect and promote their health: Wash your hands. Brush your teeth. Get plenty of sleep. Eat your vegetables. Drink your milk. Cover your sneeze. Put tissues in the trash. Wear shoes outside. Use sunscreen and a hat…. These early skills and health practices place lucky children on a trajectory to healthy adulthood. They develop to keep adults on a trajectory to healthy old age.
This idea of a health trajectory across the life course, from preconception to old age rises from increasing understanding of the Developmental Origins of Health and Disease —DOHaD.  Today’s defining heath challenge is non-communicable disease with origins in early development: heart and lung disease, diabetes, obesity, some cancers —the leading causes of death worldwide. Parents’ health at conception, risk behaviors and healthcare in pregnancy and beyond, parenting practices, and healthcare utilization combine to define their child’s adult health. 

The Social Determinants of Health (SDoH) —especially parents’ income and education—also influence a child’s health trajectory and can change it.  For example, say Dad gets a new job. The family moves to a better zip code. The child goes to a better school and plays outdoors more, has access to higher quality food and better healthcare, and enjoys more attention from less stressed parents. That lucky child grows up healthier than the child who continues to accumulate social disadvantage in the old neighborhood. 
Less lucky children miss basic skills for health
Parents who did not learn foundational skills cannot pass them on to their children. Even if they read well, they face strident challenges to use information and services in ways that maintain or promote health. They are more likely to live in poverty, and to report poorer health status. They are more likely to have children with developmental delays and less likely to participate in Early Intervention services. They are less likely to have access to quality early learning programs for their children, and less likely to talk and read to their children. So their children are likely to be less healthy and less socially, emotionally, and cognitively ready for school compared to their luckier peers.  Like their parents, they are less likely to understand basic health concepts, eat well, or engage in preventive practices.  So they are more prone to disease as adults.
Bottom Line
Health literacy, and other building blocks for a lifetime of good health, have their foundation in social and emotional skills learned during early childhood. Children learn these foundational skills in everyday interactions with parents. Develop parents’ foundational skills along with their  health literacy to put them and their children on a trajectory to healthy adulthood and old age.


E is for Empowerment #2

Previously in this space, we  discussed a prescription for an ailing healthcare system from the European Patients' Forum: patient empowerment.
Now we look critically at the first  "Five 'Es' of Empowerment":
Health Education: patients can make informed decisions about their health if they are able to access all the relevant information, in an easily understandable format.
Is this true?  Yes.
It is easy to underestimate patients, especially those who live in poverty.  From being a single mom with a high school education and limited skills,  I can tell you that basic essentials —adequate calories, a safe place to sleep, money to keep the electricity on, shoes that fit, keeping a junker car running, just getting through the day— come before organic vegetables, exercise, and seeing the doctor for that nagging back pain. Getting by leaves little time to study an insurance policy to figure out what's an EBO and or a deductible or a network provider.  Moms almost always find time for baby care, rarely for self-care.  When patients are consistently stressed and distracted by daily life, it's easy to view them as marginally competent and under- motivated to make informed decisions.
True, but…
Access to all the relevant information….  No one in the US has all the relevant information needed to make informed health decisions. Insured or not,  patients have no way to evaluate the skill or knowledge of the provider, or the reliability of a diagnosis.  Patients and providers rarely know the price of services or drugs. Treatments have risks. Results are uncertain. Conflicting opinions and recommendations abound. Medical knowledge changes daily. When you buy a car, you can read all the relevant information on the sticker in the window.  Information about healthcare is incomplete and fluid at best.
It's easy to rely too heavily on information. Even if it's easy to understand, finding time and a quiet place to absorb it, and the energy to interpret it in the context of complex, often chaotic everyday lives is a challenge in itself. Acting on information requires much more than personal skills, knowledge and motivation.  For example: A key heath message for pregnant women (and everyone else) is to "eat well and often".  This is easy to understand. Everyone wants to do it. But it is impossible in many poverty neighborhoods, especially near month-end when money and food stamps run out.
Informed vs appropriate decisions    It is providers' challenge to respect and support patients' informed decisions. It is easy to think that a patient makes  inappropriate decisions because they lack knowledge— they are uninformed; if they just understood, they would take appropriate action.  The question here is: Appropriate for whom? And who says?
What is medically appropriate may be practically impossible due to cost or distance or family dynamics. It may be culturally unacceptable. It may conflict with the patients' practical knowledge and experience. I recall observing a Somali woman in my county hospitals' international clinic. Standing tall and lovely in yellow traditional dress, 40 weeks pregnant with a toddler clinging to her skirts, she quietly, confidently, patiently refused several providers' efforts to educate, persuade or frighten her into consenting to induction of labor. "The baby will come when the baby is ready", she repeated. She understood the information presented to her in various ways.  She evaluated the information and made an informed choice that, in western medicine, was inappropriate.
Empowerment does not always look like compliance. And unquestioning compliance constitutes neither health literacy nor empowerment. 
The best information & education can achieve health literacy only with 1) direct support to make personal meaning from the information and act on it in real life; and 2) laws, policies, built environments that make the right choice the easy choice. 
When we promote patient choice, we must acknowledge the conditions in which those choices will be made and carried out. Then we must respect patients' choices and adapt healthcare services accordingly.

E is for Empowerment

"Patients prescribe E5 for sustainable health systems"
That's the tagline for a year-long patient-empowerment campaign launched in May by the European Patients Forum, a coalition of organizations representing 150 million patients.
The 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 conditions. 
Health Literacy: an aspect of empowerment
The 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 of empowerment; it helps people gain control over their health and its determinants.  Information and 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?
The 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 which needs to be supported.

Equality: patients need support to become equal partners with health professionals in the management of their condition.

Experience: individual patients work with patient organizations to represent them, and channel their experience and collective voice.

Engagement: patients need to be involved in designing more effective healthcare for all, and in research to deliver new and better treatments and services  
Patient empowerment is a challenge for professionals, too
All 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  knowledge has 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 as respected, equal partners with useful expertise are not developed in medical school. And there is never enough time.
Content 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 "difficult", "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 here
Follow them at @PatientsprescribE


Health Literacy Scores and Hairy Ears

Researchers gave 557 parents the Short Test of Functional Health Literacy. Then they asked them if they had a TV in the room where their child sleeps. Those who scored below the “adequate” range for health literacy were more likely to have a TV in the child’s room, and more likely to report their child slept less than the reported mean. So the child’s inadequate sleep and related  behavioral problems, poor school performance and obesity s are attributed to parents “inadequate” or “marginal” health literacy.
This report reminds me of the classic example in statistics class: Research shows that men with hair in their ears are significantly more likely to have heart attacks. The quiz: Does hair in the ears cause heart attacks? Should we recommend removing hair from the ears to reduce risk? Should we test all men with hairy ears for atherosclerosis?
Of course not
You’re right. The lesson is that association does not equate to cause. Despite statistical significance, hair in the ears is not a reliable indicator of elevated risk of heart attack. You can imagine the disservice to men with hairy ears: anxiety, needless testing, unnecessary tweezing. I wondered then, and still, why was that study published?
Statistically significant, practically meaningless
The TOFHLA is a  timed (7-minute maximum) reading comprehension test on instructions to prepare for a medical procedure. Despite it’s name, it is widely criticized as a test of health-related literacy and not a measure of the broader concept of health literacy.  TOFHLA scores predicted the location of the TV, just as hairy ears predicted heart attack.
Publishing the association as if it matters suggests that if those parents could read better, they would know pediatricians recommend against a TV in the nursery; and knowing that, they would comply; and therefore the child would sleep more; and therefore, the child would be healthier.

That is a long line of assumptions that disrespects parents and offers little guidance for improving their reading ability or their health literacy,  or for supporting unskilled readers to be good parents, or for communicating more clearly that location of the TV matters to the child’s heath. It should be noted that nearly half of parents who performed well on the test also reported a TV in the nursery; and a third of those who performed poorly on the test placed the TV elsewhere. More than half of infants with a TV in the room had normal sleep duration.
I have high respect for these researchers and their contributions to the field. Still, this study is one that should not have been published. It places way too much faith in a reading test that has long  been criticized as an inadequate measure,  and not nearly enough faith in parents.

Bathory E1, Tomopoulos S2, Rothman R3, Sanders L4, Perrin EM5, Mendelsohn A2, Dreyer B2, Cerra M2, Yin HS2. Infant Sleep and Parent Health Literacy. Acad Pediatr. 2016 Mar 12. pii: S1876-2859(16)30046-8. doi: 10.1016/j.acap.2016.03.004. [Epub ahead of print]

Health Literacy Challenge: How to Save 92,000 lives & $24 Billion in Healthcare Costs Annually

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 mg is 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 to120,000 fewer new cases of heart disease annually, 32,000 to 66,000 fewer strokes and 44,000 to 92,000 fewer 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.
That's why the Food and Drug Administration just issued sodium reduction targets  for the food industry. The news release includes a link to a summary of the evidence.
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.
1.     Change your sodium palate.  Hardly plain language. The imperative assumes understanding that a body wants what it 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 salt.
2.     Start 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": breads and rolls, cold cuts and cured meats, pizza, canned soup, sandwiches, poultry.
3.     Look 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 up items 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 and comment 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.

Caution: US Exceptionalism May be Hazardous toYour Research

Dang. I just discovered another bias in my thinking.
A belief I picked up on the way to a research degree?  Knowledge someone taught me? Not sure. It's one of those things everyone just knows- well everyone in US research:  US studies are better. Higher quality. More relevant.
I made this uncomfortable, but horizon-widening discovery while working on a scoping review to find out what is reported in the literature about the impact of maternal health literacy on maternal-child health in the 0 to 3 period (pregnancy to child's third birthday) in the US.  The review includes only US studies; in part, because that's the defined task. But I wonder if we would have set that limit anyway.
The short answer to our US research question is:  Not much. Most studies of parents' health literacy are meditational analyses that  explore how one variable (usually a low reading test score) affects a second variable (most often understanding of condition-specific information or utilization of services). If we distinguish maternal health literacy from parents' health-related literacy, the number of US studies can be counted on one hand. More on that useful distinction another time. 
Interventions to improve health literacy are not so rare
US literature reviews agree that health literacy intervention studies remain rare, especially community based studies geared to diverse low literacy audiences.  True in America, but…

I've found and saved, but excluded from the current review, papers from Iran, Zambia, Ghana, Uganda, Paraguay, Madagascar, Nigeria…..These reports are about community based interventions to improve maternal health literacy in medically underserved poverty populations. The interventions are designed to be feasible in low-resource settings. These studies from low and middle income countries are likely to be quite relevant and informative for many low and middle income American counties where literacy levels are low, cultures are diverse, access to information and services is limited, and poverty defines every day life for mothers and children. 
Lesson learned: those who have the problem are most likely to know the solution. We have a corner on resources, but not on scholarship and useful knowledge.
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