A Patient’s Perspective on the Health Literacy Myth
Maria Ross

Maria Ross

How do you prepare to be a patient? This is the question that Maria Ross, a college-educated business owner with an interest in acting, asked her audience. The story she told of her brain aneurysm and recovery was ample proof that you can’t. Her point was that we can do a better job of helping the health care system understand what it is like to be a patient. Her talk, she said, would be about patient care versus patient processing.

A common thread ran through Ross’s story about the weeks she spent in intensive care, months of therapy and home care, and against the odds, her recovery. It was the sensation that she had “dropped into a foreign language.” The doctors had saved her life, but she and her family struggled to understand what that life would be like. She recognized through her experience, that ongoing maintenance and abilities for self care are what patients need, just as much if not more than the medical prowess that saved their lives. She quoted Lori McKitrick , a speech therapist at the Survivorship Training and Rehab (STAR) program, Greenville, S.C “In a lot of hospitals you will see patients fall through the cracks after surgery….We are doing a great job saving people’s lives but we have to help them live their lives, too.” (WSJ, Jan 2013)

This recognition has led her to teaching health literacy skills like teach back and serving as a Patient Advisor at the University of Washington Medical Center.  Among her recommendations: ditch the jargon. The hospital is your world not ours.  What’s common knowledge in your business, your tribe, is not in ours. We all take for granted that “our world” is everywhere. Similarly she advised providers to understand the patient’s context. She recalled the story of a person who came to her home during the recovery process to deliver resources for the blind. Though she had successfully undergone surgery to reverse blindness resulting from the aneurysm, she was not, at that point, blind. The person dismissed this context, and did what he felt was his job to do—he delivered those resources.

Ross reminded the audience that silence is not golden, nor is “yes.” Patients need to ask for information to be repeated and to ask questions like “what do you hope to find out from this test?” Providers need to be looking at questioning as a sign of engagement, like taking notes. Don’t assume that patients have been told something—either by another person, or by you. Use checklists and scripts so you can be sure you’ve said what needs to be said, and recommend reference materials. And get creative--Use teaching aids, written materials, and 3-D models. One of the memories she has retained, in spite of the fact that it happened when she had difficulty with short-term memory, was an explanation given by a provider who used a model.

The recommendations Ross offered were clear and simple and perhaps familiar to many in the audience, but particularly acute in the context of her story. She pointed out that according to the U.S. Department of Health and Human Services, “Nearly 9 out of 10 adults have difficulty using the everyday health information that is routinely available in healthcare facilities, retail outlets, media and communities “(2011). This ratio, she said, would be considered an abysmal failure in any other industry. Familiarity with solutions does not mitigate our need to implement them. 

Beyond Cultural Awareness: A Unified Approach to Better Outcomes and Reduced Health Disparities
Olivia Carter-Pokras, Ph.D.

Olivia Carter-Pokras, Ph.D.

What are health disparities? They are, according to Dr. Carter-Pokras, who has spent three decades in the study of health disparities, differences in health outcomes that we can measure, that we have the tools to address, and that ethically, we are obligated to address. We know that disparities do exist across all dimensions of access and quality of health care, across many clinical conditions, and many subpopulations.

The Annual report on National Healthcare Disparities in 2012 noted no changes in rates of poor communication, and no improvement in areas like diabetes care and maternal and child health and thus a need to accelerate progress. National developments, such as Healthy People 2020 and new CLAS standards have precipitated local developments, and rapid embracement by legislators. A number of states have passed cultural competency training mandates—though it is often the case that such mandates are unfunded.

Another issue is that cultural competency research and training is at work separately from health literacy training and research—and Carter-Pokras wonders why. Each has common interests but they are not on the same bus, or at the same conferences. In the October 2012 issue of the Journal of Health Communication, Carter-Pokras and her fellow authors note that “competencies have been developed for cultural competence training (Lie et al., 2008), and health literacy competencies are being developed. But educational research in each field is being conducted independently despite overlapping constructs and common desired patient outcomes.” Health literacy is often “housed” in quality improvement, and cultural and linguistic competency are aligned under patient satisfaction, when they are instead complimentary. “What better place to begin than a collaborative of health literacy and cultural competence educators working together to share tools, training strategies, and resources for the common goal of health disparities reduction, improved research agendas, and outcomes?”

So, we need to educate medical students in cultural competency and health literacy together—but how? Carter-Pokras and others have created a new “Primer: Cultural Competency and Health Literacy: A Guide to Teaching Health Professionals and Students” from the University of Maryland School of Public Health and the Maryland Department of Mental Health and Hygiene, released in May. Its stated intent is to be a resource guide to help “students and health care professionals learn how to reduce health disparities and improve health outcomes through culturally sensitive and effective communication across health disciplines.” The Primer is free and easily accessible as a download. There are six instruction modules, and learning objectives are arranged by type of competency: knowledge, attitudes and skills. Contents come from credible sources and to the extent possible, the resources in The Primer are evidence-based, though Carter-Pokras cautioned that very little research has been done—there are as few as seven studies that look at outcomes. “Moving upstream from health services research to health professions education as another solution is a logical, positive response to the call to action.”

Challenging Traditional Legal Communication: A Drafting Toolkit for Non-Lawyers
Christopher R. Trudeau, J.D.

Christopher R. Trudeau, J.D.

Mr. Trudeau began his presentation by leading his audience through his Prezzi “Swimming with the Sharks,” a detailed list of strategies for convincing lawyers to adopt plain language. He includes lawyers on the list of causes of low health literacy. Among the rational arguments for using plain language are that plain language is economical and the public prefers it, including lawyers themselves, according to a study conducted by Trudeau. He cited several examples of proof that plain language is economical, including a clarified billing statement that resulted in an 80% increase in patient payments at the Cleveland Clinic. 

Trudeau outlined the process and results of conducting a survey with 376 respondents, including details about the respondents’ education level and specifics about the kinds of language choices they preferred. Interestingly, as the education level of the respondents increased, so did the preference for plain language. He asked participants to choose between “traditional’ language examples and plain language examples. Eighty percent of the participants preferred the plain language version, which included choosing between active vs. passive constructions, strong verbs vs. nominalizations, plain words vs. complex words, and explaining vs. not explaining legal terms.

Trudeau also discussed common myths about using plain language, among them that using plain language prohibits the use of legal terms, and creates vagueness or ambiguity. He elaborated on ways to challenge these myths in the second part of his presentation, in which he described the drafting process from the lawyer’s point of view. 

He spoke in sentence level detail about fixes for problems with three different types of ambiguity (syntactic, semantic and contextual ambiguity) and gave examples of each. In opposition to the usual rule of using fewer words, he recommended giving time and space to define legal terms. Trudeau spent the remainder of his presentation discussing examples. He included an example of a consent form, an ever-present challenge to plain language and health literate communication.

Tools to Assess and Teach Child Health Skills to Parents with Low Basic Literacy
Doris Ravotas, Ph.D.
Deborah Boulware O’Neal, Ph.D.

From left, Doris Ravotas, Ph.D., Deborah Boulware O'Neal, Ph.D.

As a dynamic duo, Dr. Deborah O’Neal and Dr. Doris Ravotas lead the session on “Tools to Assess and Teach Child Health Skills to Parents with Low Basic Literacy.” Though the session was divided in halves for each speaker to present on her own research and findings, both found common ground in implementing pilot programs that measured the effects of parents using the book, ‘What To Do When Your Child Gets Sick,’ as one of the first “hands-on” resource they can use when their child becomes ill. The book covers over 50 common childhood illnesses, injuries, and health problems including fever, sore throat, cold and flu, throwing up, stomach pain, and more.

O’Neal began the session by mentioning that the U.S. racks up between $106 to $238 billion in unnecessary medical expenditures every year due to poor health literacy. Such costs account for the excess use of hospital emergency services, medication and treatment errors, minimal use of preventive services, and a lower chance in following through with prescribed treatment plans.

With these statistics in mind, Ravotas and O’Neal were very eager in finding a solution for decreasing the number of ED visits by parents and children through the promotion of the ‘What To Do When Your Child Gets Sick’ book.

O’Neal began using the book in head start programs. As time progressed, she hoped to expand the book’s usage in doctor offices, hospitals, and WIC centers.  As a result, O’Neal began developing a health education program that she was determined would reach the masses. The 4-hour program would train health professionals on: health literacy and the impact of low health literacy skills, how to identify and effectively instruct low literacy parents, the organizational format of the book, and the curriculum materials needed to help educate parents. Subsequently, parents would then receive 20-minute trainings on how to use the book and the importance of using it as a first-hand resource. From her efforts, O’Neil succeeded in hosting 18 trainings across Kansas with over 288 health professionals from 98 different clinical sites. The effects of this program were far-reaching with a decrease in doctor’s visits by 46%, a decrease in ER visits by 55%, a decrease in the number of school days missed by 64% and the number of work day missed by over half. O’Neal exclaims, “This shows that this program and book really impacts the quality of lives for families in Kansas.” Although a success story has already been written, O’Neal hopes to expand this program across the rest of Kansas and touch as many lives of her fellow Kansans as she possibly can.

Although Ravotas shared a very similar mission with O’Neal, her research approach differed in many respects. Ravotas’ research targeted Kalamazoo County with a low basic literacy population exceeding 13%. Ravotas sought to identify which training approach would be most effective in getting parents to use the book and ultimately, reduce the number of ER visits and days of work and school missed due to illness. Three training models were tested on individuals who varied in their reading proficiency score. Study group #1 was given the ‘What To Do When Your Child Gets Sick’ book and received no how to use the book. Study group #2 was given the book and received basic training on common care topics and how to use the book. Study group #3 was given the book, received training in common care topics and how to use the book, and received literacy tutoring on vocabulary, language skills, computation skills, inferential skills, text search skills, and application skills. Although Ravotas is in the process of collecting data for her study, her insight and findings will be ground-breaking in informing health professionals of the best practices for educating parents on how to handle the day-to-day ailments and illnesses of their children. We look forward to her research findings in the near future!

Designing Health Information: What Every Health Professional Needs to Know
Stacy Robison, MPH, MCHES
Xanthi Scrimgeour, MHEd, MCHES

From left, Xanthi Scrimgeour, MHEd, MCHES, Stacy Robison, MPH, MCHES

Too often as health professionals, we take care of the content of our messages but give away the power of design when we send it off to someone else. In their presentation, Stacy Robison and Xanthi Scrimgeour encourage health professionals to take back their power for the benefit of their audiences by learning the basic elements of design to create documents and resources that are not only useful and usable but also attractive—because “attractive things work better.” If in creating attractive, well-designed materials we can ease the mental burden placed on the user, we can free up space for them to better use in trying to understand and absorb the material.

To do this, Robison and Scrimegour offer the following ten basic tips for health professionals:

1. Create an obvious path for the eye to follow.
2. Use visual hierarchy.
3. Use a grid to keep content and images aligned.
4. Incorporate white space.
5. Use bulleted and numbered lists.
6. Use conceptual cues.
7. Use images to facilitate understanding.
8. Use icons or images to call out important content.
9. Consider sans serif fonts.
10. Increase your font size.

Design is about much more than appearances. If we can successfully utilize tools of visual communication, we can help the readers of our materials to find what they need, understand it when they find it, and remember it after they have read it.

How to Get Your Health Literacy Program Funded
S. Eric Anderson, Ph.D.

S. Eric Anderson, Ph.D.

Dr. Anderson explained how to calculate the break-even point for a program, determine whether the program is targeting theoretical or risks, evaluate programs where odds can be calculated and each decision has a value, assign dollar values to costs and benefits to determine if program benefits exceed costs, assign dollar values to benefits to determine which program is cost effective in a per-unit outcome and compare alternatives where program benefits are expressed with a quality-of-life adjustment.

Break-even analysis (BEA) identifies the volume at which point operations change from being a loss to profitable. Costs are classified as either fixed or variable, depending upon whether they vary with the volume of output. Profits occur when total revenues exceed total costs - fixed costs plus variable costs. The break-even point is the point at which total revenue is equal to total costs. In one scenario, Dr. Anderson explained when it is beneficial to continue programs that don’t break-even and strategies on how to price appropriately.

Risk management (RM) attempts to maximize areas where one has control over the outcome while minimizing areas where one has little control. It should be realized that risks can’t be eliminated only reduced. Dr. Anderson provided insight on the risks of allocating funds targeting unlikely risks (bio-terrorism) at the expense of likely dangers (vaccines).
Expected value (EV) provides a rational means for selecting the best alternative if the odds can be calculated and each decision has a value. Dr. Anderson evaluated dozens of risk reduction measures to see if they valued out (exceeds 100%) and provided insight on determine if a healthcare service or prevention program values out (exceeds 100%).

Cost benefit analysis (CBA) assigns dollar values to costs and benefits to determine whether the benefits realized exceed costs for a particular a program. Results of CBA are expressed as net benefits (benefits minus costs). Dr. Anderson showed us how to calculate and determine if the economic benefits exceed the costs (exceeds 100%) for a variety of programs: stop smoking programs, weight management, vaccinations, etc.

Cost effectiveness analysis (CEA) is better than CBA in situations when assigning dollar values to benefits for which market prices do not exist, such as a person’s life. In these scenarios, CEA may be a more appropriate method since it uses a cost-per-unit outcome. Units of measurement for CEA might include disease prevented, head injuries averted, number of lives saved or cost per year of life. Dr. Anderson pointed out that government agencies assess the value of life at $7.5 million, but how much they spend money is an entirely different story. They will spend millions to save the life of a single miner trapped in a cave, but balk at an extra $20,000 on a highway guardrail that would save an average of one life per year. Superfund hazardous waste clean ups prevent cancer at a cost of $5 billion per life saved.

Cost utility analysis (CUA) compares alternate strategies where net benefits are expressed as the number of life years saved, with a quality-of-life adjustment. The common measurement for CUA is quality-adjusted life years (QALY). Rather than relying on implicit judgments about the quality of life, CUA makes these values explicit in the calculation. However, Dr. Anderson noted that QALY are subjective determinations, are difficult to measure and not universally accepted.

The Language Tipping Point: Identifying the Drivers of Language Access
Elizabeth Abraham, M.A., M.Sc., C.Tran.

Elizabeth Abraham, M.A., M.Sc., C.Tran.

Language access in health care involves finding ways to ensure that language barriers do not affect health outcomes. Ms. Abraham focused first on building a case for health care systems to improve safety and quality of care for patients with limited English proficiency (LEP). She identified five important building stones: quality, risk management, compliance with federal and state law, equity and cost management.

Risk can’t be managed effectively without proper language access. Two leading causes of errors are deficient consent and inadequate medication instructions. Without a qualified medical interpreter, you do not have informed consent. These problems are disproportionate among LEP patients. Errors of clinical consequence can often be attributed to improperly trained interpreters. Abraham identified several hallmarks of poor communication leading to torts. One lawsuit, she said, would pay for many interpreters. 

Federal and state laws that compel language access include Joint Commission requirements, Title VI of the Civil Rights Act, language access legislation in every state, and the Hill-Burton act of 1946. 

Abraham cited a long list of costs attributed to lack of language access for limited English speakers. The list included entering the healthcare system in advanced and more costly stages of disease because of limited access to primary care, a higher likelihood of being hospitalized, and disproportionate use of emergency services. 

Abraham also spoke about health inequalities. She told the story of Willie Ramirez, whose life was changed due to a mistranslated word, resulting in damages of $71 million dollars. (The story can be found at the Health Affairs Blog: “Language, Culture, And Medical Tragedy: The Case of Willie Ramirez” by Gail Price Wise.) Abraham pointed out that interpretation is recreating language live, as it happens. Without interpreters, there is no possibility for clarification—wrong meanings do not get changed.

Following an interactive exercise in which participants exchanged horror stories involving lack of language access at their places of work, Abraham wrapped up the session with four steps for creating a comprehensive language access plan.  Enlisting champions from both the legal and finance departments is crucial. Ways of achieving long term solutions without project-killing expense include shared hires of interpreter and creating consortiums of HCOs who can negotiate bulk purchase of services. 

But, she said, there are also ways to accomplish short-term solutions; creating a staff Language Access Task Force and Communication Plan, using over the phone interpretation, and video interpretation (her organization uses ipads).

Finally, she said, there are quick wins—specifically, there are steps to make phone interpretation work. They include staff training, instructions posted on phones for how to use phone interpreters, department “champions,” and concentration on high demand areas like the emergency room and family medicine. There are wonderful ways, she concluded, to make systems transformation in small steps.

Closing Keynote - Panel
Michael Villaire, MSLM
Rima E. Rudd, Sc.D
Cecilia Doak, MPH

From left, Michael Villaire, MSLM, Cecilia Doak, MPH, Rima E. Rudd, Sc.D

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