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E is for Empowerment #2
E is for Empowerment
Health Literacy Scores and Hairy Ears
Health Literacy Challenge: How to Save 92,000 lives & $24 Billion in Healthcare Costs Annually
Caution: US Exceptionalism May be Hazardous toYour Research

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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 http://www.eu-patient.eu/campaign/PatientsprescribE/
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.
 
Reference
 

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.

Promoting Health Literacy: Consider Access Needs

Accessibility: A Universal Precaution
My dad states his age as older-than-dirt.  He's lost all hearing and has a bad back. He gets around with a walker. It's impossible for him to call the doctor to report an issue or schedule an appointment. He cannot drive or use public transportation. A routine office visit—getting dressed, out of the house, into the car, out of the car, into the office and onto the exam table, and then the whole process in reverse  — each step is an exhausting physical challenge and an assault on his pride. It's also exhausting and trying for Mom, his primary caregiver, driver and emotional compass.  A check-up takes most of a day. Nothing is simple.

Recently, Dad slipped off the edge of the bed and twisted his knee trying to get up. That led to four 911 calls: one to get him up (and discover he could not stand), and three "citizen assists"  to get him to the doctor's office, from there to the hospital, and after a night in the hospital, to get him home and into bed.  Thank you, my fellow tax payers.
 
He's not alone.
About 70 million of us Americans have such access needs that affect hearing, vision, or mobility and impair capacity to obtain heath information and services.  People with access needs contend with marked health disparities that may originate from the most fundamental  level —like inability to schedule an appointment, open a pill bottle, or read the fine print dosing instruction. Disparities also come from health professionals and researchers acting on assumption and stereotyping instead of data.
 
Access: first pre-requisite to health literacy
Access, the capacity to obtain…. information and services, is the first prerequisite to health literacy. And yet, several reviews report accessibility is not a topic of health literacy research and scholarly discussion.  Further, access needs is a missing demographic variable in most national databases.

Case in point: the 2003 National Assessment of Adult Literacy population sample included 30% with access needs; among them nearly half (48%) were deemed to have below basic health literacy. This is likely an underestimation since NAAL excluded those "who could not be interviewed due to cognitive or mental disabilities" and did not report demographics of those with access needs. A worldwide review of interventions to improve health literacy reports that research has, for the most part, followed NAAL's example and intentionally excluded people with mental or physical disabilities, along with other disadvantaged or "hard-to-reach" groups. Lumping together and then excluding "the disabled" from research causes disparities to persist; it's ethically questionable and alienating.  Reacting to a nurse who obviously assumed that his access needs indicated a cognitive deficit, Dad retorted, " I've got a little back problem. I can read."
 
Integrate accessibility into research, practice, policy
Health literacy standards should include accessibility and universal design approaches that make healthcare environments and information products usable to the greatest extent possible by everyone, regardless of their age, ability, or status in life.  Health literacy research should include accessibility, directly involve people with access needs, and report access-related demographics. To make the research process itself accessible to those with access needs, reports, like other health information,  should be available in multiple formats: standard, large print, Braile, text only electronic format, audiotape, sign language. 

Experts suggest we make greater use of access-enabling assistive technology to communicate with people with disabilities. The technologies show how universal design and commitment to accessibility help us all; email,  voice recognition, captioning, GPS — all were originally designed for those with access needs.
 
References & further reading
Perlow E. (2010). Accessibility: Global Gateway to Health Literacy. Health Promotion Practice 11 (1); 123-131.

Hollar DW & Rowland J. (2015). Promoting Health Literacy for People with Disabilities and Clinicians Through a Teamwork Model. Journal of Family Strengths 15 (2): article 5. Available at http://digitalcommons.library.tmc.edu.jfs/vol15/iss2/5

D'Eath M, Barry MM, & Sixsmith J.(2012)tera Rapid Evidence Review of Interventions for Improving Health Literacy. Stockholm: European Center for Disease Prevention and Control.


 

A New Improved Definition for Health Literacy: Rx to end confusion?

Health literacy (HL) thought leaders on the National Academy of Medicine’s Health Literacy Round Table are calling for a new standard definition of HL. Because there are too many definitions in play and researchers have a tough literacy task just to choose one.  And because various experts have come up with too many piggy-back terms that connect specific content to the “central concept”. And since we can’t measure things like “basic information” and “appropriate decisions”. 
 
New definition to include providers’ literacy, context, progress, action
The new definition would first and foremost acknowledge that HL is multidimensional, that is, two sided— including “both sides of the exchange”: literacy skills of individuals’  (patient or family members and “information providers”) on one side, and system demands and complexities on the other.  The broadened perspective recognizes that healthcare professionals and other info-providers in insurance, pharmaceuticals and IT, like patients, have literacy skills.  Those skills may or may not enable Those-Who-Know to understand what patients are saying or to communicate effectively. 

Further, the proposed broadened view acknowledges the role of context — “the demands and complexities” of healthcare delivery and financing systems make it difficult for everyone to participate in and obtain the full benefit of healthcare, health promotion,  health protection, and “health coverage” (I think that means insurance). 
 
The new perspective embraces the notion of progress—well, shakes hands, at least.  HL is described as a process or a pathway, implying that improvement is possible —although the document never uses those terms, referring instead to process and change.  Nonetheless, this is a big step away from old evidence suggesting that adults rarely change their level of functional literacy, and the surprisingly wide acceptance of the inference that HL is a fixed individual trait. 

Further,  HL “operates” in various settings — healthcare, insurance and pharmaceutical organizations are mentioned. And it operates in various media,  not just print.
 
Finally, the new definition will link decision and action. (Applause!). Another big step from “appropriate decisions” usually interpreted as compliance, to “informed action”, which may be against medical advice and still not indicate a cognitive deficit.

The Perspective, as the document is called, is indeed a welcome and overdue broadening of the dominant view of HL as seen from US academic medical centers. However, essential issues remain. Perhaps unresolved debates explain why a new definition is not proposed, only described by its components.
 
Health Literacy is multi-dimensional.  Social dimension still missing
HL is not simply two sided. Literacy skills may be one dimension that exists on  “both sides of the exchange”, but literacy itself is multidimensional.  The missing dimension in health literacy as defined in the US, and still in the new perspective, is the social dimension.

Literacy is a social construct. Its meaning and measure are constantly evolving to reflect society.  Literacy is different for different jobs, communities, goals, as well as for different genders, ages, cultures, times and places. In the same way, the meaning of health is also multidimensional, socially defined and evolving.  Most healthcare decisions are made and acted on  —or not—  in homes and communities in everyday life, not by appointment in offices and hospitals. 
 
At the intersection of health and literacy, it is not surprising to find a diversity of overlapping, sometimes conflicting, always evolving definitions and measures.  Experts did not come up with a bunch of new terms to tie their favorite content to a clear central concept of HL — rather they recognized that the theory of multiple literacies for multiple contexts (financial literacy, computer literacy, Spanish literacy) applies to HL, too. So we have maternal HL, mental HL, oral HL, teen HL, LBGT-HL, health insurance literacy, and many disease literacies.
 
Alternative: new improved research approaches
Try as we might to make health literacy precise and clinical with biomarkers and specific corrective actions that produce predictable results demonstrated in randomized controlled trials, HL remains a social practice that is complicated, dynamic and messy.  To understand and influence HL, the challenge is not to distill its meaning down to something easy to research, but to figure out how to research something messy.
 
Reference
Pleasant, A., R. E. Rudd, C. O’Leary, M. K. Paasche-Orlow, M. P. Allen, W. Alvarado-Little, L. Myers, K. Parson, and S. Rosen. 2016. Considerations for a new definition of health literacy. Discussion Paper, National Academy of Medicine, Washington, DC. http://nam.edu/wp-content/uploads/2016/04/Considerations-for-a-New-Definition-of- Health-Literacy.pdf.
 
Cook-Grumperz J (Ed). The Social Construction of Literacy, Second Edition Cambridge University Press

Excerpt free online:  http://www.langtoninfo.com/web_content/9780521819633_excerpt.pdf

Interactive Health Literacy: under researched, unclear concept, measurement challenge

Previously in this space we’ve said health literacy for disease preventionand health promotion is distinguished from health literacy for disease treatment. The latter is typically operationalized as functional literacy (reading and math) in a clinical setting. In contrast, to improve risk behaviors and conditions that affect their health, individuals, families and groups use interactive and critical health literacy skills.  These skill sets are applied mostly at home and in the community. We’ve looked at critical health literacy. Today we look at interactive health literacy, IHL for short.  As we might expect, research is limited and controversy abounds.
 
Not much is known about IHL
PubMed lists just 13 articles on “interactive health literacy”,  two of them review articles. I found no listings on “interactive health literacy” AND “parent” or “mother”. Most IHL studies have been reported from outside the US.

Canadians Manafo and Wong looked at IHL promotion programs for older adults with chronic disease. They differentiated IHL from functional health literacy by the aim of the intervention (skill development to increase capacity to find information and make personal meaning from it vs. information giving to increase knowledge). They found five studies on IHL for seniors, 1 from Canada, 4 from eastern U.S.  All relate to training elders to search for health information online. My understanding of Nutbeam’s model of IHL is that it refers to interpersonal interaction and communication, not interactive (vs. static) information.   The reviewed studies are limited by small samples, no comparison groups, non-experimental design, non-comparable measures and outcomes.

The second review, from England, is a concept analysis of critical health literacy. Sykes and colleagues describe critical health literacy as a set of characteristics including effective interaction between service providers and users. Key attributes include social and communication skills, and interpersonal skills.  So critical health literacy is seen as “arising from …ability to interact effectively”, that is to navigate services, and to advocate and articulate confidently when communicating with a health professional —IHL.  This view looks at the faces of health literacy described by Nutbeam as a hierarchy of skill levels that develop linearly. However,not all scholars agree; and it seems difficult to separate interactive from critical health literacy.
 
Measures of IHL
Two studies, one from Japan and one from the Netherlands, used the Functional Communicative Critical Health Literacy scale which measures frequency of perceived difficulty with tasks indicative of the three levels. These authors describe IHL as the skills that can be used to participate actively in everyday situations, extract health information and derive meaning from different forms of health communication and apply it to changing circumstances,  while critical health literacy  refersto ability to exert control over health. Among Japanese patients with diabetes, interactive and critical health literacy, but not functional health literacy, were associated with self-efficacy, the most important factor in behavior change.  The Dutch authors conclude that IHL was associated with ability to organize care, interact with healthcare providers and perform selfcare.

Again, in these studies interactive/communicative and critical health literacy skill levels overlap and are difficult to differentiate. Indeed, in psychometric testing, communicative (interactive) and critical health literacy were closely related and findings were reported in two categories: functional vs. communicative and critical health literacy.

Rubin et al describe the Measure of Interactive Health Literacy,  a 10-minute telephone-administered “performance measure of an individual’s proclivity to engage in information seeking from health information sources” For more info, see:
 
Skill levels or categories? All are needed to protect and promote health
Another school of thought — the one I’m in — sees categories of health literacy skills rather than levels.  Individuals or groups combine skills from Nutbeam’s three categories in different ways for different tasks and situations.  Strength in one skill or skill set can make up for weakness in another.  And a family or community  member can contribute skills that an individual lacks. That’s how health literacy becomes a community asset.

Through interaction, information that is understood cognitively, is processed socially and personalized to the particular context and circumstance.  Interactive health literacy skills combine with functional literacy (reading and math) and critical health literacy skills to empower individuals and communities to use information for health and gain control over its determinants.
 
 
Reference & further reading
Manafo E & Wong S (2012).  Health literacy programs for older adults: a systematic literature review. Health Education Research 27 (6); 947-960. doi:10.1093/her/cys067 
 
Sykes S, Wills J, Rowlands G, & Popple K. (2013). Understanding critical health literacy: a concept analysis. BMC Public Health 13:150 doi:10.1186/1471-2458-13-150
 
Rubin DL, Parmer, J, Friemuth V, et al. (2011). Associations Between Older Adults Spoken Interactive Health Literacy and Selected Care and Health Communication Outcomes. Journal of Health Communication 16sup3, 191-204. doi:  10.1080/10810730.2011.604380
 
Ishikawa H, Takeaki T, &Yano E. (2008). Measuring functional, communicative, and critical health literacy among diabetic patients. Diabetes Care 31 (5),874-879.
 

Van Der Heide I, Heihmans M, Schutt AJ, et al. (2015). Functional, interactive, and critical health literacy: Varying relationships with control over care and number of GP visits. Patient Education and Counseling 98 (8), 998-1004.  doi: 10.1026/j.pec2015.04.006

Research Review - Health Literacy for Prevention: Improvement Requires Intense Intervention

 
SNAPW: Improve these behaviors to prevent chronic disease
Smoking, Nutrition, Alcohol, Physical activity, Weight
 
To find out which providers can improve health literacy for prevention,  Australian researchers completed a systematic review of quantitative studies (What works?) and narrative synthesis of qualitative work (Why? How?). The review covers research published 1985 to 2009, much of which was done by US researchers. The authors focused on “members of the primary care team” —providers working in general and family practice, community health, home nursing, private or public allied health, health education, or information— and evaluated  their effectiveness in promoting positive change in health literacy and SNAPW behaviors. 

The researchers ran into some issues that I’ve come up against in an ongoing scoping review  to discover what is known about the impact of mothers’ health literacy on maternal-child health. Health literacy and related concepts are poorly indexed, so it is necessary to search on lots of terms. The Aussies wrestled 4691 papers down to 94. We started with 2600+ and are still wrestling. There are many varied outcome measures. There are 50+ instruments to measure functional heath literacy (reading & math) and none to measure interactive or critical health literacy.  Nonetheless, this research report is on my must-read list.
 
Take Home Messages
 
1.    Health literacy can be improved; 71% of reviewed studies demonstrated improvement in health literacy.  (A round of applause for the researchers who published what did not work.)    Some interventions improved health literacy (measured as knowledge, skill, attitude, self-efficacy, states of change, motivation, or patient activation) without affecting behaviors. This result supports other findings that knowledge and skill do not necessary translate to health promoting action; people make informed choices to not act on what they know.   On the other hand, some interventions resulted in improved behavior (smoking) without affecting health literacy; that supports previous findings that specific knowledge may not be a prerequisite for behavior change. One RCT* found that brief counseling by a physician led to increased patient action, but only those who were referred to group programs demonstrated improvement in diet and weight.  I suspect that improvement in one health literacy indicator is insufficient to support behavior change, which likely requires some combination of knowledge and skills and motivations and self-efficacy and social support.

2.    Non-physician providers are effective health literacy promoters. Nine of 10 interventions provided by nurses, dietitians, health educators (92%) or multidisciplinary teams (91%) improved health literacy. Compare that to three of nine (33%) interventions provided by physicians.

3.    Intensity of the intervention seems to be the difference. One study found the average length of visit with a primary care physician was 8 minutes shorter than the time it takes to deliver smoking cessation counseling. Indeed, time was the barrier to improving health literacy most frequently mentioned mentioned by providers, followed by attitudes and beliefs. Most physician-delivered interventions were brief, one-time encounters. In comparison, interventions delivered by non-medical service providers ranged from 6 hours to 2 years. Limited time in clinical settings may preclude the trusting relationship required to support behavior change.     
                                                                                                          
Conclusion: Moderate to high intensity interventions are needed to address SNAPW behaviors.  Production demands in primary care settings (see 30 patients a day) limit physicians to brief interventions that can increase knowledge and motivate patient action but rarely result in improved behaviors.

Call to Action
Clinicians:  to improve health literacy for prevention of chronic disease, collaborate with-, refer to- and promote participation in intensive programs led by other health professionals and paraprofessionals.

Health educators, home visitors, community health workers, dietitians, public health nurses, social workers, case managers, parent educators, program directors: collaborate with clinicians to integrate health literacy promotion into your usual activities, organize referral relationships, bridge home and healthcare.
 
*RCT: Randomized Controlled Trial
 
Reference
Dennis S, Williams, A, Taggart J, et al. (2012). Which providers can bridge the health literacy gap in lifestyle risk factor modification education: a systematic review and narrative synthesis. BMC Family Practice. 13:44. 91 citations.  Open Access. Free at  http://www.biomedcentral.com/1471-2296/13/44
 

 

The Future of Health Literacy is in Public Health Refocus on disease prevention and health promotion

Health literacy is not just for patients
Mothers, and the rest of us, use heath literacy across three domains: disease treatment, disease prevention and health promotion [1]. We should address those domains in opposite order. If we put health literacy for enhancing health first, we would have less need to struggle with disease and treatment.
 
Most health literacy research has taken place in US academic medical centers. The focus has been exclusively on disease treatment. In Australia, they differentiate this narrow conceptualization as medical literacy.  In these lines of inquiry, health literacy is operationalized as low reading skill in a clinical setting. It is identified by brief reading tests using medical terms. Since the problem is perceived as limited reading skill in patients, the solution is to reduce the literacy demands of medical and insurance information and improve its delivery.  The goal is to enable patients to better manage disease and improve treatment outcomes.
 
Quality information is essential for accessible, quality healthcare. But the clinical approach cannot achieve the national vision of a health literate society [2]. That requires ramping up the public health model of health literacy.  
 
Health literacy to prevent risk from escalating to need
From a public health standpoint, health literacy is seen as a personal and community asset that can be developed [3]. The asset enables and empowers individuals, families, communities to use information and services to protect and promote health. This is health literacy in everyday life.
 
11 reasons to refocus on health literacy in everyday life
1.    Americans spend about 1 hour per year in a clinical setting [4]. Health is lost or gained, protected, promoted and managed in the other 8759 hours at home and in the community.

2.    Low literacy is one among many interrelated personal, systemic, social and environmental factors in patients’ “failure” to engage and comply with medical care and preventive practices.

3.    Poor outcomes are not fully explained by low literacy. Medical care can be hazardous to health.  In 1999 the Institute of Medicine shocked the nation with its report that medical errors alone accounted for about 100,000 deaths per year [6]. In 2015, estimates are up to 400,000 deaths annually due to preventable medical errors— that is 1000+ deaths— plus 10,000 serious complications cases— resulting from preventable medical errors every day [7]

4.    About 10-15% of early deaths could be avoided by more accessible or otherwise better medical care. The low potential is not so surprising since we spend 95% [4] of our $3 Trillion national health investment — 16% of the GDP [5] — on medical treatments. 

5.    In contrast, about 40% of early deaths are caused by behaviors [4]. This figure takes on greater significance in light of recent reports of declining life expectancy among middle-aged Americans. 

6.    About 30% of early deaths are due to genetic predisposition [4], which takes us back to behaviors, which can determine whether a gene is expressed.

7.    Another 15% of deaths are attributed to social conditions [4].

8.    The remaining 5% are due to environmental exposures [4].

9.    The potential payoff from improving health literacy for disease treatment is up to 15%. Compare that to a potential 40 to 90% payoff from improving health literacy for disease prevention and health promotion.

10.  The Affordable Care Act is shifting resources to prevention and health promotion. 

11.  Increased understanding of DOHaD — Developmental Origins of Health and Disease— led the United Nations General Assembly to recommend all nations work to promote health literacy [in the public health asset model] as a global strategy to address the burdens of non-communicable disease [8].
 
It is time for Public Health to step up
Public Health has, especially in the US, with some encouraging exceptions, approached health literacy in the medical model with research questions related to the risks of low literacy (reading, math skills) to potential patients and healthcare systems. Can the public understand when and how to call 911? disaster preparedness guidance? emergency communications? health insurance options? Leading public health scholars have argued that health literacy is behavior change and health literacy improvement can be measured by changes in a person’s or a community’s actions, practices and behaviors [3] indicating increasing autonomy and capacity to produce the identified consequences of improved health literacy: positive changes in risk behaviors, selfcare, and health services utilization [1,9].  At least five published studies now demonstrate the feasibility of directly improving health literacy through usual health promotion activities: health education, skills development, and direct information assistance. Groups like Just Health Action are promoting community health literacy. 
 
We have strong theory, available measures, and early evidence.  We have a federal mandate, and an international call to action. We need leadership and resources to build the science around the public health model of health literacy as a personal and community asset to be developed.  Because the highest and best use of health literacy is to prevent health risk from escalating to medical need.
 
References & further reading
1. Sorenson, K., Van den Broucke, S., Fullam, J., Doyle, G., Pelikan, J., et. al. (2012) Health literacy and public health: A systematic review and integration of definitions and models. BMC Public Health 12:80. www.biomedcentral.com/1471-2458/12/80

2.  Nielsen-Bohlman, et al. (1999) Health Literacy: Prescription to End Confusion, Institute of  Medicine. Free online: http://www.nap.edu/catalog/10883/health-literacy-a-prescription-to-end-confusion

3. Nutbeam, D. (2008) The evolving concept of health literacy. Social Science & Medicine 67, 2072-2078.

4.  McGinnis JM, Williams-Russo P, & Knickman JR. (2002). The Case For More Active Policy Attention To Health  Promotion, Health Affairs, 21, no.2:78-93. Full text online: http://content.healthaffairs.org/content/21/2/78.full.pdf     


6.  Institute of Medicine (1999). To Err is Human: Building a Safer Health System. Free online:

7. McCann, E. (2014). Deaths by Medical Mistakes Hit Records. HealthcareITNews. Free online:
 http://www.healthcareitnews.com/news/deaths-by-medical-mistakes-hit-records

8. United Nations Economic and Social Council. (2010). Health literacy and the millennium development goals:  United Nations Economic and Social Council regional meeting background paper. Journal of Health Communication15, 211-222.

9. Sykes, S., Wills, J., Rowlands, G. &  Popple, K. (2013). Understanding critical health literacy:  A concept  analysis. Biomed Central Public Health:13:150.  Open Access:  http:www.biomedcentral.com1471-2458/13/150
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