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What should be the core conversation between a doctor and an individual s/he sees for 15 minutes per year?
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In response to The Arc of Health Literacy, a Viewpoint published in JAMA online August 8, 2015.
2015 Kids Count Child Well-Being Report Released

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

This question was raised by Winston Wong, Director of Disparities Improvement and Quality Initiatives at Kaiser Permanente, during the Institute of Medicine's recent workshop, Health Literacy: Past, Present and Future. The workshop marked 10 years since  IOM released the landmark report Health Literacy: A Prescription to End Confusion.  A summary of the workshop proceedings was released this month. Download a summary of the workshop free from National Academy of Sciences.  Definitely worth the read.

Here's the part that made me stop and applaud

 In a discussion about health literacy and its role in achieving equity, Wong  recounted a conversation among health plan leaders on patients' non-medical needs (social determinants of health), that led to the question: What should be the core conversation between a doctor and an individual s/he sees for 15 minutes per year? “One interesting proposition is that we should start the discussion with every person we come in contact with by asking 'what does a good day mean to you,’" Wong said, "because that’s really a much more important question than ‘what hurts’ or ‘have you been taking your medicine today.’”

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

It's empowering.
Wong said it reflects the fact that medicine can help with some problems, but what ultimately makes for a good day for someone is determined by a constellation of actors that foster good health. The question recognizes that on average Americans spend about one hour per year in a clinical setting; the healthcare professional is just one actors; s/he marshals resources that account for about 10% of health.  The other actors are the people the individual is with the other 8764.81 hours per year. The power to create health, and to live well with disease, is with the patient.
What is a good day like for you? addresses the person and his/her "real life",  instead of focusing narrowly on the patients' disease and treatment. It suggests the patient's selfcare is achieving some good days, rather than reducing the person to a medical problem and assuming that s/he has failed to comply with the medication regimen. 

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

> It cannot be answered yes or no. It requires the respondent to think critically about what matters to them, to reflect on what they want from medical care and how they will know they got it. It leads to conversation about what the person is able and willing to do now to achieve more good days.

> The response serves the patient, rather than simply informing the clinician.

> The response enables the clinician to hear and adopt the patient's words, so the patient is not expected to learn medical terminology, and the clinician is not expected to check a glossary of simplified terms.

>  The question allows the patient to figure out and articulate what they want and need, making it easier for the provider to achieve patient satisfaction.

> It shifts thinking and conversation from what patient and clinician do not want — disease and suffering— and how to get rid of it,  to what they do want —good days— and how to get more of them.

The hard part is waiting for the response

Patients are not accustomed to being asked reflective questions, especially by clinicians. Many, especially those who live in poverty and face daily discrimination, are rarely asked questions and may be trained not to think.  The reflexive first response is likely to be "I don't know".  They need a way to think about it. Try again; Can you remember a good day or a good moment?  Then the hard part: wait.  Let them be the one to fill the silence.  Ask follow up questions to help the patient clarify what s/he wants, and what will tell her that she got it; what has worked before and what is needed to achieve more good days. An effective conversation will end with the patient articulating the action s/he will take and the clinician offering supportive information and services.

More on reflective questioning
Reference & further reading:

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

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

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

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

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

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

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

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

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

2015 Kids Count Child Well-Being Report Released

Health disparities, low health literacy begin in poverty
Despite some encouraging news in the just-released annual state rankings for child well-being, Annie E Casey Foundation reports large numbers of children of all racial and ethnic groups are facing economic conditions that can impede long-term success.  In 2013 (latest figures) in the world's richest country, 22% of all children live below the poverty line —$24,250 annual income for a family of 4. According to the Economic Policy Institute it takes at least twice that amount to provide basic essentials. It's worse than the average suggests.  Here is where health disparities begin: 39% of African American children,  37% of Native American children, 33% of Hispanic children live in poverty. Compared to 14% of white children.

      "When very young children experience poverty, particularly if that poverty is         deep and persistent, they are at high risk of encountering difficulties later in      life - having poorer adolescent health, becoming teen mothers, dropping out        of school and facing poor employment outcomes." 

Implications for health literacy improvement                                            
These figures jumped out at me since preliminary findings from my current research suggest that basic essentials —- safe housing, adequate food, transportation, health insurance, and child care — are prerequisites for developing maternal health literacy, mothers' ability to use information and services to keep healthy and raise and healthy competent child. It makes sense that no amount of reading skill, understanding of healthcare, or knowledge of preventive practices can make those practices possible when feeding the children necessarily takes priority. National and international policy documents call for improving health literacy in parents to reduce health disparities. Progress in unlikely until we provide health insurance and economic supports to parents of very young children. 
 
Cheers for the Affordable Care Act
Thanks to Obamacare, the rate of insured kids improved 30% leaving 7% or 5.2 million uninsured, most in states that declined to expand Medicaid
 
Cheers for Alaska
Applause for Alaska governor Bill Walker. He announced last week that he will use executive authority to expand Medicaid. That means nearly 30,000 Alaskans will soon be able obtain insurance.  The annual Kids Count Datebook ranks Alaska 31 among the states for child health. The governor's action bodes well for a higher ranking in coming years.
 
Cheers for Minnesota
They're Number 1 overall in the Kids Count ratings, 2nd in health behind Iowa.
 
Oh Mississippi! Worst place for kids. Still.  
Mississippi ranked 50th overall as it has every year since the rankings were first published in 1990. The state was last in economic well-being, health, and family & community. It ranked 48th in education ahead of New Mexico and Nevada.
 
 
See your state rankings here.
 
 
References:
Economic Policy Institute. Family budget calculator. www.epi.org/resources/budget/  



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.
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