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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 research: www.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.

The Gift of a Reflective Question

Reflective questioning is an alternative approach to educating and informing mothers. While the goal of 
educating and informing is to increase knowledge; the goal of reflective questioning is to empower mothers
to use knowledge for their personal benefit.  

The World Bank defines empowerment as the ability to make choices and transform those choices into desired 
actions and outcomes.  A good reflective question begins a conversation that leads the  mother through a process 
of getting from information to action to outcome. A reflective conversation opens opportunity for the mother to 
think about and articulate:

1)    What she wants (If this pregnancy turned out perfectly, what would it look like?);

2)    What she's got (What have you tried?  How have you been able to cope? How is  that working for you? What's 
       missing? Who can help? Since you've been pregnant, how are you stronger?)

3)   What's next (You say you're at 3 now, what will it take to get to 4? What might be a first step? How will you 
      know you're ready?)                                    

As one parent educator explained, "Parents have their own answers. We just need to ask questions to get them 
thinking."

(c) Practice Development Inc  All rights reserved.

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 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  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, Rapporteur .
This PDF is available from The National Academies Press at http://www.nap.edu/catalog.php?record_id=21714

Quick easy cheap health literacy aid

My Dad was in the hospital this week.  I found this laminated sheet on the counter at the nurses station. 
Patients, family and visitors with LEP —limited English proficiency—  or a problem speaking could just point
 to a picture to indicate  what they need.  A great simple idea that could save time and stress for all, including 
nurses who get to answer all those questions and requests.  I’m disappointed that in this rural community 
with a large Spanish-speaking population all the people pictured are white, well and handsome. The well-coifed 
woman eating is wearing a dress and pearls; she is clearly not from around here. And all the words are in English. 
If the clip art more closely reflected the community and the text was bilingual you could hear me applauding. 


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
 

 

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/  

Are patients rational decision-makers?

"In any situation, a person decides what to do based on an understanding of facts, issues, options for action, and consequences." So says PlainLanguage.gov. Oh, would that it were so! This premise that individuals needing medical care are rational consumers is, in itself, irrational.
 
Participating in healthcare is not like buying a car.
When it comes to healthcare decisions, understanding the medical facts and treatment options and consequences often requires an advanced degree, specialized vocabulary, internet access and research skills. The "facts" — like the definition of health literacy — are likely to differ by who you ask. Well-established medical facts change along with rapidly developing knowledge and technology.  The price of treatments, and whether and how much insurance will cover, is usually unknown by both service provider and consumer until after the fact.  The medical, personal and social consequences of a disease or treatment option are in most cases predictable only by what seems to have happened to other people in other families and circumstances.  So if it were true that we humans base our health and medical decisions and actions on objective rational logic, few such decisions could be made.

In healthcare, where issues and consequences are intensely personal, often embarrassing, frightening, financially devastating, and far reaching, decision-making and behaviors are more often based on a mix of emotions, insurance status, immigration status, cultural or religious beliefs,  trust or mistrust of providers or government, practical considerations like availability of transportation…the list could go on and on. 
 
Knowing is not enough; we must apply. Willing is not enough; we must do. ~Goethe
This flawed view of individuals as rational consumers of health services separate from the context of their everyday lives supports another convenient but equally flawed notion: If people just had more or better information, they would make appropriate decisions and adopt health promoting behaviors. PlainLanguage.gov presents this as the theoretical foundation for the Ask Me Three[questions] campaign. That may be a good conversation starter.
 
Still, seeing patients as rational consumers who ought to lead discussions about their care places the "health literacy problem" (high costs, disparate outcomes, inefficiencies and inequities) squarely on the patient. If we are to achieve the national vision of a health literate society, rather than expecting individuals in need of healthcare services to learn medical terminology and disease information, healthcare professionals must learn to communicate effectively with people who have not gone to medical school. Rather than insisting that patients re-arrange their lives, become researchers and care managers, and endure all manner of inconvenience to comply with overly complex treatment regimens, healthcare delivery professionals must adapt treatments to the realities of everyday life.
 
Further reading:
Howard K. Koh, Donald M. Berwick, Carolyn M. Clancy, Cynthia Baur, Cindy Brach, Linda M. Harris and Eileen G. Zerhusen. New Federal Policy Initiatives To Boost Health Literacy Can Help The Nation Move Beyond The Cycle Of Costly 'Crisis Care' Health Affairs 31, no.2 (2012):434-443(published online January 18, 2012; 10.1377/hlthaff.2011.1169)
 
 
 

 

A father's day story

I share this story with the permission of it’s author, Michael Joe Harrison. Michael was on my 
first date with Larry, now my husband of 37 years. Larry was Michael’s volunteer big brother
through Big Brothers Big Sisters of Virginia. He was 15, a long-haired foul-mouthed certified 
Juvenile Delinquent. Long story short, we all got out of VA;  Larry & I, my daughter Lisa and 
Michael became a family Seattle. Michael quickly adopted the role of loyal protective big 
brother.  At 18 he went back East, reunited with his sister, finished school, married, established
a business, raised a family, and became the one his relatives turned to when their kids got into
trouble. When Lisa got married, we offered her any gift she could imagine - she wanted Michael 
in her wedding. Now a grandfather, musician, business owner in Georgia, and still very much part
of our family,  Michael reflects on fatherhood in this from his Facebook page.
 
Just like my Children
Roughly 14 years ago, most all the trees in the front yard I planted. Each one planted represented 
a loved one. Specifically today, would like to talk about the ones planted for my children, Jennifer
Manor, Chris Bradley and Kim Harrison.
 
When I planted these trees, they were young. I feed and watered them, pampered them hoping 
they would grow tall and strong. Just like my children.

These trees started to grow, there roots grew deep to provide a strong foundation to stand on. It 
took a little time but slowly they anchored themselves and could hold their own. Just like my children.

Their branches spread, helped provide shade on hot days. Their branches provided shelter and 
families grew from their branches. Just like my children.

Sometimes branches broke. I would worry that if too many broke, I would lose them. New branches 
grew and the trees were more resilient, wiser if you will. Just like my children.

Each tree is different. None are the same. This means they grew and matured at different rates. 
Their leafs and blooms grew and fell at different time. Each one is unique. Just like my children.

These trees have weathered many seasons. They would grow new leaves every spring. Survived the 
bitter cold and survived life’s stormy weather. Just like my children.

We all moved away. I could no longer pamper them. They had to stand on their own and they did. 
They are strong, healthy and their leaves provide air which breath life to all. Just like my children.

Which one is my favorite? Well I can’t answer that. Each one has their history. Each one was planted 
with love equally. Along the journey, each one has special memories and stories. Just like my children.

To say I am proud of these trees, I am. Actually I love these trees. Love comes in many forms. It’s 
been a wonderful experience to watch these trees to grow and mature. So yes I do love them. 
Just like my children.
 


 

Health Info Producer: Become a UX Writer

In a recent meeting to discuss online searching for health information, Rachel was introduced as a 
UX writer for Google. Mystified, I googled her job title. Turns out UX is short for User Experience. A 
UX writer is first an advocate for the user of information. Rachel does not think about educating 
readers who need to process and understand information and gain knowledge. Rather, she  "creates 
useful, meaningful text that helps users complete the task at hand."
 
Imagine how information from health care organizations would be different if producers and reviewers 
aimed not to educate patients with low literacy, but rather to "simplify and beautify the user experience" 
of obtaining treatment, using medications, or navigating facilities.  Imagine if we wrote  not for "low 
literate patients", but for an information user assumed to be competent, although unfamiliar with the
 content and context.  What if we regularly used empathy along with logic and hard data to inform content
 choices? What if we worked closely with teammates from a variety of disciplines?
 
Rachel writes about Google software products. Elsewhere, her position might be titled technical writer.  
What differentiates her from technical writers, and most health information producers, is her intent to 
improve the users experience, instead of intent to improve the information.  Another essential differentiating
 factor is that Rachel the UX writer assumes users of the info she produces will have different levels of 
proficiency, background knowledge, and experience. She does not require them to learn a new vocabulary. 
She does not demand reforms to public education to increase computer literacy so that people can benefit
 from her products and services.  Rather she enables them to use her information with the skills they have.
 
A UX mindset would transform health information and the process of health education.
 
A UX Writer's job description would be a good starting place to describe a health literacy specialist or health 
educator position. Find one here.
 
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