Conference Recap-Part 1

Institute for Healthcare Advancement

7^th Annual Health Literacy Conference

Health Literacy in Primary Care: Best Practices and Skill Building

Hyatt Regency, Irvine, California

May 1-2, 2008

Following is a recap of the conference general sessions and selected breakout sessions.

Thursday, May 1, 2008

Conference Keynote

"Health Literacy: A National Agenda"

Richard H. Carmona, M.D., M.P.H., FACS

17^th Surgeon General of the United States (2002-2006)

Vice Chairman, Canyon Ranch

President, Canyon Ranch Institute

Distinguished Professor, Mel and Enid Zuckerman College of Public Health, University of Arizona

"First and foremost, the nation needs to transform from a sick care system to a health care system. I know that from experience as a child, not having access to healthcare and being health illiterate and having a family that wasn't health literate enough."

Richard H. Carmona, M.D., IHA's Seventh Annual Health Literacy Conference

Born to a poor, Puerto Rican family in New York City, Dr. Carmona experienced homelessness, hunger, and health disparities during his youth. The experience greatly sensitized him to the relationships among culture, health, education and economic status and shaped his future.

Dr. Carmona shared with the audience his journey that led him from poverty to great success and accomplishment as our nation's 17th Surgeon General.

"My father was the youngest of 27 children.  My mom was an only child.  Both came from very poor families.  Both my grandmothers were seamstresses, and nobody got past high school.  They were common, poor, hard working people.  My mother struggled her whole life with substance problems.  My father did too. They were good, kind, caring people but they had the demons that they couldn't get out from under," said Dr. Carmona.

People are searching for optimal health information, but they are confused and their health illiteracy gets worse. "Health illiteracy plays a big role in people not being able to grasp scientific information and use it to change their behavior," said Dr. Carmona.

In 1964, the Surgeon General's report on smoking was an attempt to improve health literacy of the American public by saying that smoking kills, causes lung cancer. Almost 50 years later, as Surgeon General, Dr. Carmona published a report on second-hand smoke.

Dr. Carmona reflected on the literacy gap. "People continue to smoke. Cigarettes are the only product legally available in this country that, when use correctly, will kill you. We have 9 million children who are overweight or obese. Two out of three Americans are overweight or obese. Of these 9 million obese children, many have type 2 diabetes. We are also starting to see hypertension in grammar school."

In order to combat these problems Dr. Carmona decided to approach the problem like a politician.  He labeled obesity as a national security problem and called it a "terror within" to get the attention he wanted from both the media and the public. At a press conference he said, "Obesity is a terror within. Many of us lost many of our friends on 9/11., but I'm equally hurting from the 9 million children who are disintegrating before us, and this is the future of our society.

"Health literacy is equally important in the war on terror and in preparedness. The nation today doesn't understand the threats and challenges before it," said Dr. Carmona.

Health literacy directly relates to our level of preparedness in this nation, he said. The Katrina disaster was an example of lack of preparedness due to health illiteracy. "We can't move forward in this healthcare crisis in this nation, whatever sector you work in, unless we improve health literacy. That people get culturally competent, health literate messages from the best science in the world, packaged in such a way that it resonates with them and it forces them to change behavior-that's the goal for all of us, no matter what you are doing," said Dr. Carmona.

With this in mind, the Surgeon General's office created a 900-page report on second-hand smoke that took him years to get out because of political problems. The regular person wouldn't read it, so now with every Surgeon General's report they also write a "people's piece." Written at an 8th grade level, they condensed the 900 pages of the second-hand smoke report into a 30-page comic book format.

Less than 18 months after this condensed version of the report went out, over half the states adopted smoke-free ordinances. "Every continent in the world has taken that report and reduced the amount of smoking in their countries and created smoke-free environments. This report of the Surgeon General and his team will save trillions of dollars in healthcare and millions of lives over decades, "because of a culture changing from one allowing smoking to one that doesn't allow smoking," said Dr. Carmona.

The Surgeon General's reports are an example of health literacy. They inform the American public and drive change in behavior.

Dr. Carmona emphasized that we need to be "figuring out how to deliver culturally competent, resonant, relevant messages in order to change behavior. Without that we cannot be successful in anything that we are doing in any of the fields that we come from."

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"The ACPF Diabetes Guide: How We Did it and Why it Works"
Terry Davis, Ph.D.
Louisiana State University

Terry C. Davis, Ph.D., Professor of Medicine and Pediatrics at Louisiana State University Health Sciences Center in Shreveport, Louisiana, is a pioneer in the field of health literacy. She chaired Louisiana's statewide Health Literacy Task Force, which was the first legislatively mandated health literacy group in the nation, and she has published more than 90 articles and book chapters related to health literacy.  Dr. Davis' talk focused on the easy to read guide, Living With Diabetes: An Everyday Guide for You and Your Family, published by the American College of Physicians Foundation (ACPF). She and her team put together the guide on diabetes, and she discussed why they chose diabetes and why the book works for everyone. (Each attendee at the IHA Health Literacy Conference received a free copy of the guide, compliments of IHA.)

She said the nature of our health information communication needs to be improved. "Most health information is knowledge transfer, and we all know that's not enough," said Dr. Davis. More than 90 million adults have trouble understanding and acting on health information since most health information is unnecessarily complex. With over 126 million Americans suffering from one or more chronic illnesses and the majority of patients not receiving the appropriate education or care, patients need support for self-management and systematic follow ups.

Dr. Davis promotes effective self-management education, explaining that it must go beyond knowledge to focus on helping the patient change behavior. This education needs to stress benefits and motivation for behavior change along with goal setting, offering support, and follow-up. "If there is one thing you get out of this talk, focus on the 'need to know and do' versus the 'nice to know.' Emphasize benefits and accompany it with brief counseling support and follow-up," said Dr. Davis.

Part of diabetic self-management is goal setting. Dr. Davis suggests baby steps when setting goals with patients. Goals work best if they are small, short term, and easily achievable. They can be used to teach behavior changes and problem solving. These goals need to be created by the patient but facilitated by the provider.

Dr. Davis went on to explain the purpose of the ACPF project and why they chose to focus on diabetes. "Diabetes is widespread, with 18.2 million U. S. adults having diabetes and 1.3 million new cases each year. Substantial self-management is required and many patients have difficulty carrying out recommended care. And knowledge alone does not improve outcomes.many patients felt like a failure because they have diabetes."

The national project team consisted of experts in the fields of diabetes, health literacy and communication. They reviewed existing diabetes patient education materials and conducted focus groups in five states. Here is what they learned from patients:

• They want information focused on how to manage their diabetes, not why
• They want practical strategies for hunger, eating out, and exercise
• Patients rarely called the doctor's office for help because they may not know what questions to ask
• Patients wanted support groups and few were available
• Patients often know more than they think they do, but they have difficulty problem-solving
• Patients want physicians to "Tell me what I need to do now to take care of myself"

What the focus groups learned from physicians is quite different. Doctors want to inform patients about:

• Severity of diabetes
• Associated health risks
• Meaning of A1c tests
• Importance of checking blood sugar regularly

Some of the problems that came to light were that the physicians wanted to teach their patients but they felt they lacked the time and/or reimbursement. The doctors may give information that is not useful and they may overwhelm patients with too much information or give too little. Young physicians use scare tactics while older physicians may be fatalistic.

The project team took all of this information and set out to write the diabetes guide. They used over 800 photographs to convey the message. The team was not able to find stock photographs or photographs with correct portion sizes, so the team prepared the food and hired a photographer to take the pictures.

Making the guide a success was not easy. Much of the writing was at a fifth grade level to make it more user-friendly. "Developing user-friendly materials is not rocket science. But I am telling you, it is harder and more tedious, and takes a lot longer than you think it would," said Dr. Davis. "You can begin to simplify things, but it's layers and layers to make sure that it is understandable, culturally appropriate, and that the emotional tone is useful, that it lands right and you have got to partner with patients to make sure you do that."

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Breakout Session

"Practical Strategies to Improve Health Care Communication"
Will Harper, M.D.
University of Chicago

As a general internist and associate professor of medicine at the University of Chicago Pritzker School of Medicine, Will Harper, M.D. has created a curriculum that is based on health literacy for medical students. His teaching focuses on training students in history taking, physical exam, communication skills, and clinical reasoning. So it is not surprising that the goal of his session is to improve communication between the patient and the practitioner.

Dr. Harper stressed the importance of health literacy in patient care. Most patient instructions are written. Verbal instructions are often complex, delivered too rapidly, and easily forgotten in a stressful situation. "Health literacy is important because our healthcare environment is so complex," said Dr. Harper, "in that there are more medications, more tests and procedures, and a greater need for self-care requirements."

Low health literacy has been proven to increase the mortality rate of the elderly. A recent study showed that with all things equal (in regards to the status of their disease), with literacy being the only difference, those with low literacy are more likely to die in five years than those with higher health literacy rates.

Patients need to be empowered to be advocates for their healthcare and healthcare providers need to communicate better with patients. The AMA Foundation created a Safe

Communication Universal Precautions to help improve communication. Dr. Harper took it one step further and created a memory aid called "Make Communication S.A.F.E.R."

• S = Slow, short, sensible, specific. Slow down the pace of your speech; use simple language - short words, short sentences, no medical jargon, etc.; and be specific. For example, instead of saying angina, say chest pains; instead of benign, say not cancer; instead of carcinoma, say cancer, etc.
• A = Ask patient questions appropriately. Focus on the critical information patients need to know. Don't say, "Do you have any questions?" "Does this make sense?" or "Any questions?" You should instead ask the patient to explain the information in their own words, and how can you make this clearer for them.
• F = Focus on the fundamentals and repeat. Teach the patient only what is absolutely necessary and try to focus on 2-3 concepts. Dr. Harper uses what he calls "chunks and checks," which he defines as giving the patient a little information and checking to see if it is understood.
• E = Enlist the support of other resources. These can be staff, family, and/or handouts. If you choose handouts, make sure the materials are patient friendly and culturally appropriate.
• R = Repeat back/teach back to confirm understanding such as "I want to make sure I explained everything clearly. If you were talking to your wife, what would you tell her we talked about today?"

Dr. Harper closed his talk with a small group exercise. He had each table practice health literary skills by creating a clinic with a patient, a resident, and observers/feedback. Dr. Harper asked attendees to remember the following: "Focus on what's important. What are the critical pieces of information the patient needs to know? Focus on those and hit 'em hard."

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"Improving Drug Labeling in the U.S."
Michael Wolf, Ph.D., MPH
Northwestern University

As a social/behavioral scientist and health services researcher, Michael Wolf, Ph.D., MPH, has a tremendous amount of expertise in health literacy, learning and cognition, health behavior, and health disparities. Dr. Wolf is an Assistant Professor of Medicine, Institute for Healthcare Studies, and Director of the Health Literacy and Learning Program within the Feinberg School of Medicine at Northwestern University. He has also published numerous articles, is funded by the CDC, and advises the FDA on health literacy matters.

In September 2006, Dr. Wolf and his team set out to investigate the current system for patient prescription communication, targeting container labeling. Their goal was to seek out the root causes, consider steps for improvement, and to find a standard and integrated system of patient medication information. "We wanted to see where patients get their information about their prescription medication," he said.

It is assumed that the attending physician adequately counsels the patient on their prescribed medications, but in actuality, this doesn't happen often. Many missed opportunities on how to take medications arise from lack of communication between provider and patient. But it doesn't end there. Many pharmacists present little verbal communication on how to take the prescription.

Dr. Wolf's findings revealed that:

• 46% of patients misunderstand the prescription directions
• 54% don't understand the sticker warning labels; and
• less than 10% even read the sticker warning labels.

Dr. Wolf and his team uncovered seven significant findings during their study:

1. Inadequate patient understanding of prescription dosing instructions and warnings is prevalent and a significant safety concern.
2. Lack of universal standards and regulations for medication labeling is a root cause for medication error.
3. An evidence-based set of practices should guide all label content and format.
4. Instructions for use on the container label are especially important for patients and should be written in the most clear, concise manner. Language should be standardized to improve patient understanding for safe and effective use.
5. Drug labeling should be viewed as an integrated system of patient information.
6. Health care providers are not adequately communicating to patients, either orally or in print, for prescribed medicines. More training is needed to promote best practices for writing prescriptions and counseling patients.
7. Research support is necessary to advance the science of drug labeling and identify best practices for patient medication information.

Dr. Wolf added that their study revealed 39 different ways to say "take one pill a day," and 24 ways for the pharmacy to interpret this. They sent four prescriptions to 86 pharmacies across the country and found a large degree of variability.

"The sig line, or what we call the dosage instructions, we view as the most problematic piece of information," he said. After much analysis, Dr. Wolf's team was able to come up with an evidence base for labeling standards:

• Use explicit text to describe dosage/interval instructions
• Use a recognizable visual aid to convey dosage/interval instructions
• Use simple language, avoiding unfamiliar words/medical jargon
• When possible include indication for use
• Include distinguishable front and back sides to the label
• Organize label in a patient-centered manner
• Improve typography, use larger, sans serif font
• When applicable, use numeric versus alphabetic characters
• Use typographic cues (bolding and highlighting) for patient content only
• Use horizontal text only
• Use a standard icon system for signaling and organizing auxiliary warnings and instructions

Out of this study came a prototype for improving the prescription label. They created a "Uniform Medication Schedule" (UMS) that helps patients quickly process how to take their medication.

Dr. Wolf proposed that the new labeling begin at the point of prescribing with a prescription pad that uses a UMS or an electronic health record. Testing found that the sig messages that use time intervals (i.e. UMS) reduce misinterpretations by 70% and that inclusion of UMS on the prescription label improved patient comprehension by more than 75% beyond enhanced sig messages and formatting alone.

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Panel

"Research Agenda for Health Literacy"
Moderator - Michael Wolf, Ph.D, MPH, Northwestern University

Terry Davis, Ph.D., Louisiana State University

Denise C. Park, Ph.D., University of Texas at Dallas

Barry Weiss, M.D., University of Arizona

Gloria Mayer, R.N., Ed.D, Institute for Healthcare Advancement

Thursday's panel comprised outstanding professionals in the area of health literacy.  Dr. Terry Davis is a well known advocate of health literacy and was once referred to as the "godmother of health literacy." The moderator then referred to Dr. Barry Weiss as the "godfather of health literacy." Dr. Denise Park is from the University of Arizona and has been doing work in the advancement of health literacy. Dr. Gloria Meyer was asked to join the panel to lend her expertise from working with the Institute of Healthcare Advancement.

The first question asked by the panel was, "What is the difference between literacy and health literacy?"

In response to the question, Dr. Davis remarked, "I think literacy is a root problem.  This country must deal with its broadest implications.  But, second of all, healthcare is increasingly complex and people are increasingly responsible for taking care of themselves, their children and their aging parents.  And it's hard to, and we have got to make things more patient-centered, make it easier for people to be healthy and take good care of themselves." Dr. Mayer remarked, "Even though you could be literate, healthcare is so difficult.  Even if you are health literate, it doesn't mean you really understand your own personal healthcare."

The next question dealt with screening for literary skills in the healthcare setting. It was felt that it has a role, but a narrower one. There's no proof that screening everyone for their literary skills is going to make a difference in their life, their health or anything else. You cannot tell by talking to a person if they have low literacy. However, "Even people who read below a 4th grade level and have very low literacy can speak at a 7th to 8th grade level. And, so, just talking to them, you can't tell, which is good for them," said Dr. Davis.

Dr. Mayer's approach is that, "Everyone likes simple, everyone likes easy. We don't have to test them; we don't have to do anything." Dr. Davis mentioned that when you do a teach-back you can see someone's level of understanding and that is more helpful.

Dr. Park brought up the point that if you have someone imagine completing a task, they are more likely to succeed. She mentioned a study with diabetic patients that had twice the adherence of monitoring blood glucose levels when they imagined completing the task. For three minutes of instruction, she got a lasting three-week adherence to a complicated medical task of using a glucose monitor. She made the point, "It's not all inside the subject's heads and their literacy level. That is important, I don't want to minimize it, but there are other things that are important and it's bypassing the literacy system." Dr. Park further pointed out that the patients that have low literacy may have chaos operating in their life that may operate against them taking their medication. It's not so much a question of, "Do they know what to do," but rather, "Can they remember what to do."

The final question for the panel was, "What are we going to do about the issue of health literacy and what is your single most critical issue that we should be doing right now?"

Dr. Mayer felt everything we write for patients should be written at no higher than a 3rd or 4th grade reading level. Build a business case for organizations and write everything at a much simpler reading level. Dr. Weiss is concerned that the issue of health literacy could fall off the radar screen in the next 10 years if we don't show that it's something more than just a marker for the poor working class. "We need research that shows that dealing with health literacy makes a difference and disease outcomes can be better," he said.

Dr. Park would like to see us use the system as it exists and come up with ways to use people's existing knowledge with the imagination technique, with procedural materials. She believes we overestimate the power of written materials. Dr. Davis said that all medicines have risks and most Americans don't realize it. For the future, she would like to see us doing a better job and having practical health education in the curriculum of our children's schools.

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Breakout Session

"More than Words: Assessing Quality of Translated Materials"
Yolanda Partida, MSW, DPA
Hablamos Juntos/UCSF Fresno

In 2001, the Robert Wood Johnson Foundation created an initiative to address language barriers in health care. The fruit of this initiative is Hablamos Juntos (We Speak Together), a premier national resource on language access and services headed up by Yolanda Partida, MSW, DPA, as the National Program Director.

"When we started to look at language barriers, one of the things we discovered is that we were trying to make the case on it's your obligation, being able to communicate with people across languages mandated by federal law. And where we are 7 years later is this is a real quality issue because it's fundamental to health care," said Dr. Partida.

In populations with language barriers, disparities in health status or health outcomes are much more pervasive. "A small study done by the Seattle Children's Hospital found that adverse events tended to happen more often when there is a language barrier and the consequences tend to be more severe," said Dr. Partida

Hablamos Juntos started with 10 demonstrations across the country. They thought they'd identify the national experts in the country, bring them in and do intensive workshops with their demonstrations and help them with answers. They collected over 100 documents that they each thought were good, quality materials that could be replicated. Before they put them on the website, the documents were reviewed for minor mistakes.

They contracted with some Spanish PhD students to review the papers and they couldn't read the Spanish in the documents because they couldn't figure out what they were trying to say. They needed the English originals to make sense of the documents.

So they went back and found 87 original English documents that could be matched to 100 documents. Then they couldn't go any further in the study until they figured out why the Spanish documents weren't readable by someone who was proficient in the language. So they spent the next three years trying to understand what these patterns of error mean and why did they occur.

Dr. Partida discovered that there are very few programs for translators and that testing the skills of interpreters/translators is not being done. This could be because to date, translation has been the domain of business, science, and government with the structure of translation being business oriented.

Translation is both a product and a process. The government doesn't know how to develop technical specifications for assessing translation quality. It requires new competencies.

"The take-away is that translation projects require a partnership between the requestors and the translator," said Dr. Partida. Many requestors give little support to the translators and are unable to tell the translator what the main objective is. They hand over an English paper and want an equivalent paper in the chosen language. "If you have poor quality English originals, translation doesn't make them better. They just make them more difficult to read," said Dr. Partida.

Dr. Partida took this definition of quality one step further and proposed to redefine quality by specifications. "Translation quality is defined as the degree to which the characteristics of a translation fulfill the requirements of the agreed-upon specifications. In the end, if the patient doesn't get it, we haven't done it right," she said.

To help get it right, Dr. Partida and her team have created the Translation Quality Assessment (TQA) Tool, designed to assist health care requestors assess the adequacy of translated materials and provides a summary evaluation of the overall quality of a translation product. "The purpose of the evaluation is to test the adequacy of translated materials. Does the text achieve the communicative purpose with the intended audience?" asked Dr. Partida. The object of TQA is the translated text. The text is being evaluated, not the translator.

Using the tool, a translation document is then rated by a rater, based on the above criteria and scoring points in each category. A rater is preferably someone with language skills and familiarity with translation. The instructions to use the tool require application of these skills.

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