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2015 Kids Count Child Well-Being Report Released
Are patients rational decision-makers?
Health Info Producer: Become a UX Writer
On Plain Language & Improving Health Literacy
9 out of 10 adults lack the skills to manage their health. Really?

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Center for Health Literacy Promotion Blog

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)
 
 
 

 

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.

On Plain Language & Improving Health Literacy

Information producers should be less concerned about healthcare consumers’ lack of literacy skills and more concerned that we are all “limited-capacity information processors” [1].
 
"In any situation, a person decides what to do based on under-
standing of facts, issues, options for action, and consequences.
 
This  statement from an article titled “Improving Health Literacy” at PlainLanguage.gov is bound to set information providers and health literacy promoters down a dead end. It describes health decisions that fit the process for effective decision making taught in graduate classes Dartmouth  [http://www.umassd.edu/fycm/decisionmaking/process/] and multiple models of how health decisions ought to be made. We hope and trust that healthcare professionals use this conscious, deliberative, analytical, linear, reasoned process for treatment decisions. Consumers do not.
 
Healthcare decisions are based on emotion
We consumers are much more likely to use what experts in decision-making processes call an “experimental” approach that is intuitive, automatic, associative and driven by emotions.  It is feelings that make meaning from information and motivate actions. Because we can only use a limited amount of information, we consumers automatically search for info that warrants our attention and info we can disregard. Health decisions typically are complex and require complex information on unfamiliar topics,  using unfamiliar terms and concepts.  More info requires more time and energy and often yields more uncertainty and competing messages. Even otherwise information-hungry consumers may limit information seeking and almost certainly disregard available information that is hard to use when physically, mentally, spiritually and financial stressed by illness. The value of plain language information in a simple form is that it makes information easier to use so that consumers do not have to use short cuts.
 
Plain language information is necessary but insufficient to improve health literacy. It needs to be formulated to make decision-making, rather than reading less cognitively and emotionally demanding. It needs to come with direct support to help people process the info based on their specific needs and the everyday home context in which they are expected transform decisions into actions and outcomes.
 
References
Consumers in Healthcare: The burden of choice. (2005). Shaller, D.  California Healthcare Foundation, Oakland. Online at http://www.chcf.org/~/media/MEDIA%20LIBRARY%20Files/PDF/C/PDF%20ConsumersInHealthCareBurdenChoice.pdf
 
The Adaptive Decision Maker. John W. Payne, James R. Bettman and Eric J. Johnson, Cambridge: Cambridge University Press, 1993,307 pp. ISBN 0 521 41505 5 (hc), ISBN 0 521 42526 3 (pb)
 
 
 

 

9 out of 10 adults lack the skills to manage their health. Really?

I just saw it again:  In fact, 9 out of 10 US adults do not have the skills to manage their health (from a newsletter whose author shall remain unnamed)
 
Last week, I saw that figure, stated as a related but different known fact, on the NYU student health website:  Nearly 9 of 10 adults have difficulty using the everyday health information that is routinely available in our healthcare facilities, retail outlets, media, and communities (not sure who our refers to). That same quote is found in the CDC report titled The State of Aging and Health in America 2013  

Here’s another version made somewhat more accurate by qualifiers: Only 12 percent of adults have Proficient health literacy, according to the National Assessment of Adult Literacy. In other words, nearly 9 out of 10 adults may lack the skills needed to manage their health and prevent disease.
 
The source of this oft quoted and variously interpreted statement is data from the 2003 National Assessment of Adult Literacy. That was a lengthy pencil and paper literacy test taken by 19,000 US adults 12 years ago. It included “health tasks”, hypothetical situations thought to represent common literacy activities related to health.
 
 Use your critical literacy skills
•   The statement is not a fact.
It is a national-level estimate extrapolated from a population sample. Research, and especially literacy testing, does not produce fact, only likelihood; in this case, at the national level. The statement is meaningless in discussion of individuals.

•   The test has been used once. Its validity is unknown.

•   “Health literacy tasks” in the test are common only to insured, experienced patients.

For example: A Proficient rating means the person can use a table to calculate an employee’s share of health insurance costs for a year. This is nonsense to a person who has never qualified for employer-based coverage.
 
Below Basic means a person cannot read a short set of instructions and identify what is permissible to drink before a medical test.  More nonsense for a person who has never had a medical test.
 
•   The information was produced to publicize a problem, spur action and advocate for research funding. That may explain why reports refer to “only 12 % are Proficient” and then round down to 10% and delete nearly to state that 9 out of 10 are not proficient; and suggest that individuals need to score at the Proficient level to manage their health, or use everyday health information, or prevent disease.  A more accurate, but less motivating report might have said,  “Only 14% of US adults scored Below Basic in heath literacy. They are primarily impoverished, socially disadvantaged adults who attended low quality schools and are excluded from the healthcare system.”   
 
•   It is rarely reported that “the majority of US adults” (53%) scored at the Intermediate level, and another 22% (“[nearly] 1 in 4”) demonstrated Basic health literacy.   If it is true, as suggested, that a Proficient heath literacy score translates to proficient management of health, disease prevention, and “understanding basic heath information to make appropriate decisions”; and if it’s also true an Intermediate or Basic score translates to incompetence, that’s an incrimination of a healthcare system that benefits only 1 out 10 it intends to serve.
 
•   It’s rarely reported that 30% of college graduates scored at the Proficient level, compared to 3% of high school graduates and 1% of non-graduates. That figure suggests making higher education accessible to all adults as a matter of health policy and healthcare cost containment. It also suggests you need a college degree to benefit from “the best healthcare system in the world”
 
It is imperative to move away from this questionable, disempowering, self-defeating, system-centric oft-repeated extrapolation that 9 out of 10 US adults do not have the skills to manage their health. Healthcare would benefit by using theories of health literacy as an asset and a pragmatic intervention to design health services that benefit people with the skills they have instead of lamenting that people just are not smart enough to use health information and services. As long as we contend that what we need in order to have quality, equitable, affordable healthcare is a smarter patient; we’re spinning our wheels.

 

Health Literacy Researchers, let’s move on!


My grandson was up to bat in his first little league game. I shouted enthusiastically from the stands, “Eye on the ball, Rhett. Eye on the ball!”  He stepped out of the box, lowered the bat, and replied in a low bored voice with all the power of a stage whisper,  “ I already know that. You don’t need to tell me.”  Now I know how he felt.
 
A headline flashed on my screen this morning “Information materials… too complex for patients". We know that. For sure. For certain. No doubt. No question.    A PubMed search on “readability of patient information”  brings up 2149 published articles; 45 already in  2015, one every work day.
 
The continued focus on patients’ inability to understand information from healthcare providers and insurers is not just wasteful, it’s harmful in several ways.
 
Readability is the low hanging fruit of health literacy research. It’s picked. There are so many urgent unanswered questions to investigate.  Funders and editors, please require more forward thinking, and more actionable results.
 
Readability studies are about patients and their deficits.  On average, Americans spend about 1 hour per year as a patient in a clinical setting. The near exclusive focus on patients’ in health literacy research excludes most of us, most of the time. It defines individuals as their disease. It suggests a person only needs health literacy when seeking or obtaining medical care. If research refocused on what promotes a person’s or community’s ability to use information and services for health, risk would less often progress to need, and fewer of us would be patients. We would discover interventions to complement information-improvement initiatives.
 
Focus on “low literate patients’”  deficits  is disempowering, disrespectful, and self-defeating.  It positions patients as incapable of doing what is required to recover and cope. It breeds unnecessary dependence on professionals. It positions patients as victims of disease, and providers as their rescuers — both untenable positions in a system that strives to be patient centered and prevention focused and wants patients to self-manage disease and be partners in treatment.
 
We need no  more studies to document the problem. We need to remove barriers, and develop skills, particularly interactive and reflective skills which are typically categorized as advanced health literacy skills and not included in health literacy studies.  We need to understand the contexts in which people strive to act on information to keep healthy, live well with disease, and raise heathy competent children.  We need recognize and research health literacy beyond the clinical encounter in everyday life where information is understood and acted on - or not.
 
Let’s stop analyzing how bad health-related information is, put into practice what we know about making it clear and actionable,  and move on to figure out what, besides plain language, empowers people translate information into health promoting actions and outcomes.

Paid parental leave - finally

I’m proud of my city. We are catching up with the rest of the world.
 
Yesterday Mayor Ed Murray announced Seattle will provide paid parental leave for City employees.  All parents — foster parents, adoptive parents, mothers and fathers— will have the option to take four weeks off —with pay— to bond with a new child.  The mayor is encouraging other employers in the state to offer similar benefits.
 
This should not be the surprise, the bold move, the breakthrough that it is.
The US is the only developed country on the planet that does not give new parents paid time off to support attachment and bonding and infant brain development, and to put their newborns on a positive health trajectory. President Obama announced a similar new  policy to provide six weeks paid parental leave to federal workers in his State of the Union address.
 
A step toward gender equity in the workplace
I’m especially glad the paid leave policy will apply to fathers as well as mothers. That presents child care as a shared responsibility. It puts to rest arguments and  unfair choices that have plagued so many women’s career…You are on the mommy track, so you can’t be on the partnership track. The paid leave policy protects mothers’ earning potential, avoids unfair expectations and burdens and removes that awful choice between career and family.
 
Most of all, this investment in parents shows we are a society that values its children, including adopted children and those in foster care. It shows respect for the role of fathers in raising children, and the role of mothers in the workforce.  It acknowledges the contributions  of foster parents — special people who can love other people’s children as their own, and encourages foster parenting. Thank you Mr Mayor and Mr President for leadership toward a stronger city, region and society.

February is Teen Dating Abuse Awareness Month

February is teen dating abuse awareness month.  Throughout the month of February, teens and organizations across the country have been working together to raise awareness about teen dating violence.  As a dating abuse prevention educator February is my busiest month (which is why it has taken me so long to write this blog). Every week I visit the schools in my community to discuss dating violence, healthy relationships and how to recognize warning signs. I speak with students from 7 grade all the way through college about their experiences. I am proud of what I do and I am grateful to work in a community that considers these issues important enough to discuss with our children all throughout they year. I wish I could say the same for the community I live in.  Not every district or county recognizes the importance of discussing healthy relationships with adolescence, which is shocking considering the statistics (see below). I have tried on more than one occasion to bring presentations similar to the ones I do in other communities to my son’s school to no avail.  The question is why aren’t some schools or some communities talking about dating violence?
 
The simple answer is, it is not an easy subject to talk about. We are taught to ignore or to stay quiet when we see signs of abuse. We are not encouraged to talk about abusive behaviors in relationships. If you are parents, it's even more challenging to open a conversation with your child about relationships. Where do you begin, and at what age?
 
It is important to recognize that dating abuse affects everyone. It knows no boundaries and crosses all barriers. It can and does happen to anyone, at any time at any age all around the world. The repercussions are far-reaching and impossible to ignore.  According to loveisrespect.org violent relationships in adolescence can have serious ramifications by putting the victims at higher risk for substance abuse, eating disorders, risky sexual behavior and further domestic violence.  It affects children, their families, their schools and their communities.
 
It can be difficult to talk to your children or a young person in your life about relationships, dating and especially sex but if you don’t, who will? We must talk to our youth about how to recognize warning signs, what a healthy relationship looks like and where to get help.  Talk to them and listen to what they have to say. If you don’t know where to begin, I have listed resources for you below as well as some statistics.
 
Everyone deserves a healthy relationship. Not everyone knows what that looks like (especially when they are looking to the media and culture for examples but that is an entirely separate future blog post) so it is up to us to begin the conversation. Reach out to your local agencies; see if they can bring someone in to the schools to reinforce what you are teaching them at home. We can raise awareness, we can prevent violence in relationships and we can do that one talk at a time.
 
 
Did you know:
 
·       1 in 3 teens in the U.S. is the victim of physical, sexual, emotional, or verbal abuse by a dating partner, a figure that far exceeds other types of youth violence.
 
·       Girls and young women between the ages of 16 and 24 experience the highest rate of intimate partner violence (almost triple the national average).
 
·       Violent relationships in adolescence can have serious ramifications by putting victims at higher risk for substance abuse, eating disorders, risky sexual behaviors, and further domestic violence.
 
·       Eighty one percent of parents believe teen-dating violence is not an issue or admit they don’t know if it’s an issue.
 
·       One in three adolescents in the U.S. is a victim of physical, sexual, emotional or verbal abuse from a dating partner, a figure that far exceeds rates of other types of youth violence.

·       One in 10 high school students has been purposefully hit, slapped or physically hurt by a boyfriend or girlfriend.
 
·       One quarter of high school girls have been victims of physical or sexual abuse.
 
·       Approximately 70% of college students say they have been sexually coerced.
 
There are many organizations doing incredible work focusing on relationship violence awareness and prevention. These are a few of my favorites.
 
 
 
Reference:
 
www.loveisrespect.org

 

CLAMs for diverse populations can overcome language barriers Culturally & Linguistically Appropriate Materials

US residents speak at least 329 languages. In some US cities less than 60% of the population speaks English. About 32 million of us speak a language other than English at home. If your service population is not diverse now, it will be soon.  Pew Research projects the US Spanish speaking population will triple by 2050, and the Asian population will double. Success in improving the health of ethnic populations will substantially influence the future health of America as a whole.
 
Healthcare organizations have been working to develop their capacity to address language barriers and cultural differences, but it’s hard to make progress when the challenge is increasing along with the complexity of treatments and healthcare delivery and financing systems. Non- English speakers still face substantial communication barriers at almost every level of the health care system.
 
Studies show that communication barriers have a negative impact on health, discourage use of preventive services, and increase costs of treatment through unnecessary testing, delayed diagnosis, extended treatment times, and misinterpreted instructions. Without information that they can understand and use in their everyday lives, patients cannot engage in self-care or self-management. In short, they cannot take responsibility for their health and be partners in treatment, as effective care now requires.
 
In most cases, provider organizations and insurers have the means to overcome language barriers. But current practice in most communities still reflects an assumption that it is the patients' obligation to make themselves understood, to ask appropriate questions and to correctly interpret and comply with instructions. In most instances, this assumption is wrong as a matter of law. Federal and state civil rights laws and Medicaid regulations require access to linguistically appropriate care. These laws are the basis for accreditation standards that require providers and insurers to position themselves for our multicultural future.  

Studies show that print materials, particularly in combination with brief counseling, can increase recall, compliance, and behavior changes; and reduce consultations regarding discomforts that could be self-managed. Health information is increasingly available and accessed online, through mobile devices and virtual patient educators. Still a clear message from research participants is that written information should always be available, even in the presence of multiple other media.

While they are not a total solution, CLAMs remain the necessary foundation for a comprehensive communication effort, and an obvious starting place to promote health literacy. Organizations serving diverse populations will need to hone a process to develop and test English language materials, and to adapt essential proven materials for non-English speakers.  More on that next time. Stay tuned.
 
 
 
 
 

 

Critical Health Literacy: The mind’s strongest glue?


Previously in this space, we talked about the identified consequences of health literacy. I argued that the documented presence of those consequences in a mother’s (or other’s) life would be evidence that she  possesses and used health literacy skills to produce those consequences.  Now we look specifically at critical health literacy and its consequences.
 
Nutbeam (2000, 2008) followed literacy scholars Freebody and Luke (1990) to name levels, or, more accurately, categories of health literacy: functional/technical skills (ability to read and use numbers); interactive/social skills (listening, speaking) and critical health literacy, critical thinking skills that enable a person to apply information in new circumstances (Nutbeam 2000) in one’s own life (Kickbush 2001).
 
While critical skills are commonly considered advanced or higher level skills, some literacy scholars (Charner-Laird, Fiarman, Park, Soderber & Nunes, 2003) have argued that critical  thinking, especially reflection, is so essential to making meaning from information and using it in context, that it should be considered a basic skill. They describe reflection as the “mind’s strongest glue” for making connections essential to understanding any subject.  Maternal health literacy includes all three categories of health literacy skills, which mothers use in various combinations according to the task and the context. Strong skills in one category (say listening and remembering) can compensate for lesser skill in another category (like reading).
 
Is Critical Health Literacy different from Health Literacy?
Sykes and colleagues (2013) wanted to know if critical health literacy is really different from associated concepts like health literacy and empowerment. So they analyzed the literature on critical health literacy and interviewed UK health literacy experts. They concluded that critical health literacy is indeed a unique concept differentiated from related concepts by its consequences: confidence or self-efficacy,  improved quality of life,  increased social capital, and improved health outcomes.  The unique consequences of critical heath literacy suggest that critical thinking is the active ingredient in health literacy that leads to action and outcomes. This adds weight to our operating theory at Beginnings Guides and the Center for Health Literacy Promotion that reflection is a key lifeskill for mothers taking responsibility for family health.
 
The Active Ingredient in Health Literacy: critical thinking skills
My friend and colleague, home visiting expert Linda Wollesenhas been saying for decades that mothers make progress when home visitors, parent educators (I’ll add patient educators and health educators) stop giving answers and instead ask questions that make mothers think. In the process of working out answers to reflective questions mothers learn to look objectively, critically at a situation to make sense of it and choose a purposeful response, to formulate their own questions for information seeking, to interpret information and use it for practical purposes in their everyday lives. 
 
Basic health literacy, described as reading and numeracy skills used to understand basic information needed to make appropriate health decisions (Monday I will quit smoking)  is insufficient to affect outcomes. Action is required for outcomes, often sustained and difficult action. And critical thinking skills are required to plan action, progress in the face of barriers, and produce desired outcomes. So to be health literate, mothers and others need skills in all three categories: functional, interactive and critical health literacy. And the greatest of these is critical health literacy — thinking skills to respond intentionally to the health challenges and opportunities of everyday life.
 
 
References
Nutbeam D. (2000)Nutbeam, D. (2000). Health literacy as a public health goal: a challenge for contemporary health education and communication strategies into the 21st Century. Health Promotion International, 15, 259267.
 
Nutbeam, D. (2008). The evolving concept of health literacy. Social Science & Medicine, 67, 2072-2078.
 
Kickbush,IS. (2001).Health Literacy: addressing the health and education divide.Health Promotion International 16 (3), 289-297.
 
Sykes S, Willis J, Rowlands G & Popple K. (2013). Understanding critical literacy: a concept analysis. Biomed Central Public Health:13:150. http:www.biomedcentral.com1471
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