Impact Studies in Health Literacy and Patient Activation - PART 1

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DougSeubert (8 years ago)

For more information, please visit my website: http://www.healthcommunications.org

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This presentation is an expanded version of a webinar sponsored by Krames Patient Education that I facilitated on July 29. You can get more information about Krames at www.krames.com.   My name is Doug Seubert. I’m a health communications specialist, and you can learn more about health literacy and patient activation at my website, www.healthcommunications.org.

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Agenda for this Webinar

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Introduction: My name is Doug Seubert, I am a health communications specialist, and health literacy and patient activation are two things I am very passionate about. I’ve worked several years in health care and have been involved in some research projects, but recently moved over to the adult education/literacy side, working with literacy groups and public health organizations. Most of the information in this presentation comes from the work of others in the field. As a health communications specialist, and also as a health care consumer and patient and full-time care giver, I look for ways to draw from the research and to use available tools and resources to improve health communications. Improved health communications leads to improved health outcomes.   Some disclaimers: I do not have any financial interest in or relationship with any commercial entities producing health care products or services. The information I am sharing with you, especially regarding tools and resources, comes from my personal and professional experience using them, I’m not here to endorse or sell anything.   And I realize we have a mixed audience participating in this Webinar, so some of this information may or may not be new to you. And my health care experience was all within a clinic setting, so I tend to think in terms of patients and providers, but I am learning to now also think in terms of health care consumers and, in the literacy field, “learners” – so patient can also mean member, client, customer, etc.

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With that said, lets begin with the concept of patient-centered, consumer-center, member-centered care. It’s care or services based on individual wants needs and preferences. It includes shared decision-making and respecting the decisions our patients, members, customers make. It’s also about providing them with the education and support they need to participate in their care.

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Access to health information that is easy to understand and act upon is essential to empowering patients and consumers, and we as health care providers, service providers, have a responsibility to provide that information.

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It is, therefore, the very definition of health literacy: the degree to which individuals have the capacity to obtain, process, understand health information and act on that information.   A couple things about this definition form the Institute of Medicine: many tend to interpret the word “individuals” as only meaning patients or health care consumers. And “appropriate decisions” implies an attached judgment, as if to say we need to push people into making the decisions we believe are appropriate for them.

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First, William Smith, who served on the IOM Committee on Health Literacy, participated in a discussion on the definition of health literacy on the national health literacy list-serv, and stated that “individuals” also includes organizations and communities, and health literacy also includes sharing information.   So, this expanded definition includes all of us, on multiple levels: as patients and health care consumers, as community members, as health care professionals and service providers, and as care givers.

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Dr. Schwartzberg, from the American medical Association, participating in the same discussion, made the point that health literacy also refers to the capacity of professionals and institutions to communicate effectively. And it’s about individuals and communities making informed decisions and taking appropriate actions to protect and promote good health.

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Patient activation, as defined by Dr. Judith Hibbard, is simply the ability to manage one’s own health and health care. I’m using this definition and this term “patient activation” in this presentation because it includes a validated measure, backed by research. You may think of patient activation as engagement or empowerment, or even motivation, or self-care management, or self-efficacy. And it is all of these things.   It is also the second part of health literacy definition: acting upon health information and participating in our care. Much of the focus in health literacy is still on the first part of the definition, obtaining, processing and understanding health information, with a large part of the research focused on how we as health professionals and service providers can make health information easier to understand.

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To better understand the challenges of health literacy, we first need to look at literacy in America. There have been two national surveys so far: The National Adult Literacy Survey in 1992, and the National Assessment of Adult Literacy in 2003. A lot of information came out of these surveys and it is still being studied and reported. If you are not familiar with the data from these surveys, you can get full reports and report summaries from the US Department of Education web site.

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This graph summarizes and compares both surveys:   Literacy is divided into 3 types: Prose, document, and quantitative.   Prose literacy involves the skills needed to read and understand passages of text. Examples include newspaper articles, educational brochures, and feature stories in a magazine. Document literacy involves the skills to both read and interact with the document. Examples include filling out job applications, navigating a table that compares different health insurance plans, using bus schedules and maps, and reading drug and food labels. Quantitative literacy involves the skills used in reading to make simple calculations. Examples include balancing a checkbook, figuring out a tip, completing an order form, or determining the amount of a co-payment.   The findings in the first and second national literacy assessments are similar:   Approximately one third of adults in America have basic or below basic prose and document literacy skills, and about one half of the adult population has basic or below basic quantitative literacy skills.

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Reading grade level is another way to evaluate literacy skills. While the national surveys classify literacy skills as proficient, intermediate, basic and below basic, it is also helpful to consider reading grade levels. There is not a clear or direct correlation between the literacy skill levels and reading grade levels, but in general terms, based on related research, we know that the average adult in America reads at the 6th-8th grade level. That puts the majority of American adults in the basic and intermediate literacy levels

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Here’s a good study to reference. I find it helpful to have evidence to back up statements such as this, because many people, when first hearing this statistic, don’t believe it.   This is also the basis for universal design: aim for writing and designing health education documents that can be used with the broadest audience. Writing at the 6th-8th grade level will be appropriate for about 80% of your patients, members, clients or customers. The remaining 20% may be those who need information translated into another language, or those with vision impairment that need materials printed in a larger font, and those who cannot read at all, and those who prefer getting health information and education in other ways besides reading a handout.

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And when you are trying to change the way your organization develops or purchases patient education resources, it’s good to have solid evidence to support aiming for a 6th-8th grade reading level.

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Sometimes pushback comes from thinking we are “dumbing down” health information. First, that term itself is rather offensive, but second, research shows that most everyone prefers as well as benefits from health information that is written in plain language and that is easy to understand.

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“Teaching patients with low literacy,” one of the most important texts in the field, gives the same recommendation to write health education materials at the 6th-8th grade level. But Doak, Doak and Root also provided research that shows most health information is written at a 10th grade level or higher. Thinking back to the national literacy survey results, health information at this level is aimed at the top 13% of the population with proficient literacy skills. In other words, we are making it more difficult for 87% of our patients, members and clients, and more likely that they will misunderstand or misinterpret the information, or greater still that they just won’t read it at all.

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A few years ago I was awarded some grant funding to develop a health literacy toolkit and recommendations for improving patient education materials at a large physician group practice. Part of the project included accessing and evaluating existing documents. A survey went out to staff, and since the topic of the grant focused on healthy lifestyles (healthy eating, physical activity, prevention), I first determined which handouts in the current patient education catalog were used most often. Then I used the SMOG readability formula to calculate at what reading grade level these materials were written at, and came up with an average score of about 12th grade, which verifies the research of Doak and Doak and others that most health education is written at the 10th grade level and above.   The survey also asked physicians, nurses, pharmacists, and other health care providers to agree or disagree with the statement “the education materials I use most often are written at a level that is easy to understand for most patients.” Most agreed, however nurses were more likely to disagree or at least somewhat disagree. As health professionals, we are familiar with the medical terms, and we are used to long sentences with multi-syllable words and lots and lots of prepositions! And when we write, we tend to have a preference for the passive voice.

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Here’s a good example.   What grade level is this written at?   Yes, it has some medical terms, but it is important for patients to become familiar with the language of their condition, especially the words they will hear from doctors and pharmacists. If I need to have an INR blood draw over and over, I’d like to know what INR stands for, even if I may not fully understand it.   But there are also long sentences, and passive voice “medications that are being taken” … and muti-syllable words like regulated and consistently.

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It scores at about the 14th grade level. And that’s just one paragraph in a 30 page booklet given to patients when they enroll into the anticoagulation care management program. Many of these patients are over age 65. Most are reading at around the 6th grade level. As one of those patients would I struggle through this booklet? Would I even try reading it?

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Here is the basically the same information, this time from a book available through the Agency for Healthcare Research and Quality.   Shorter sentences. Information is broken down into three paragraphs. The color bar illustrates the main concept. International Normalized Ratio is still included, but the only other multi-syllable words are medicine and important, which are rather common and familiar.   What grade level is this?

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It scores at the 9th grade level. Without International Normalized Ratio it drops to about 7th grade, right in that 6th-8th grade target range.

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Here’s another example in the form of a letter to a patient explaining recent lab results.   Again, there are medical terms, but it may be important for patient to be familiar with these terms. If this a lab that is done frequently, the patient may be familiar with the medical terms and an explanation isn’t necessary. However, based on the rest of the letter, I doubt this is the case.   This letter illustrates another proclivity of health care providers: they tend to write differently than they speak. When was the last time your doctor advised you to continue to utilize your medications?   The principles of plain language, and a preference for a conversational tone (what the American Medical Association refers to as “living room language”) over medical and technical jargon, goes a long way in improving health communications.

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This letter scores above a 14th grade reading level.

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A quote from Einstein summarizes plain language. By the way, this is a great web site. You can type anything into a text box, hit submit, and it appears on the chalkboard.

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I’m a Krames customer, and I’ve worked for health care organizations who use Krames education materials. In fact, as part of a Centers for Medicare and Medicaid demonstration project, I was part of a team that wrote and designed patient education materials on high blood pressure, high cholesterol, diabetes and heart failure, all of which has now been replaced with Krames products. Krames incorporates plain language guidelines and health literacy recommendations: information is written at the 6th-8th grade level, information is grouped into easy-to-manage sections or topics, and illustrations, graphics and video make the information easier to understand and enhances learning and recall.

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Impact Studies in Health Literacy and Patient Activation Doug Seubert, Health Communications Specialist July 29, 2010

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Agenda Introduction Overview of health literacy and patient activation Examples from the field Available resources Questions and answers

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Disclaimer I, Doug Seubert, do not have any relevant financial interest or other relationship(s) with any commercial entities producing health care related product and/or services. Patient = member = client = customer = consumer = you = me.

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Definitions Patient-Centered Care “Health care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients’ wants, needs, and preferences and that patients have the education and support they need to make decisions and participate in their own care.” (Crossing the Quality Chasm, the Institute of Medicine)

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Definitions Patient-Centered Care Access to understandable health information is essential to empower patients to participate in their care and patient-centered organizations take responsibility for providing access to that information. (Crossing the Quality Chasm, the Institute of Medicine)

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Definitions Health Literacy Health literacy is the degree to which individuals have the capacity to obtain, process, and understand health information and services needed to make appropriate health decisions. (IOM Committee on Health Literacy)

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Definitions Health Literacy Health literacy is the degree to which individuals, organizations and communities obtain, process, understand and share health information and services needed to make appropriate health decisions. (William Smith, Academy for Educational Development)

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Definitions Health Literacy Health literacy also refers to the capacity of professionals and institutions to communicate effectively so that community members can make informed decisions and take appropriate actions to protect and promote their health. (Joanne G. Schwartzberg, MD, Director, Aging and Community Health, American Medical Association)

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Definitions Patient Activation The ability to manage one’s own health and health care. (Judith Hibbard et al.)

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Literacy in America National Adult Literacy Survey (NALS) 1992 National Assessment of Adult Literacy (NAAL) 2003

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http://nces.ed.gov/pubsearch/pubsinfo.asp?pubid=2007480

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Literacy and Reading Grade Levels

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Literacy and Reading Grade Levels The average adult in the United States reads at about the sixth to eighth grade reading level, even if their total number of years of education far exceeds that grade level. Wilson FL, Racine E, Tekieli V, Williams B. Literacy, readability and cultural barriers: Critical factors to consider when educating older African Americans about anticoagulation therapy. J Clin Nurs 2003;12:275-282.

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Literacy and Reading Grade Levels It has been shown that it does not matter how high the reading ability of the targeted group might be; materials written at readability levels of sixth to eighth grade are more effective in conveying health messages and have higher rates of recall across all educational levels. Davis TC, Mayeaux EJ, Fredrickson D, Bocchini JA Jr, Jackson RH, Murphy PW. Reading ability of parents compared with reading level of pediatric patient education materials. Pediatrics 1994;93:460-468.

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Literacy and Reading Grade Levels Even patients who read at the college level have been found to prefer medical information written at the 7th grade level. Davis TC, Crouch MA, Wills G, et al. The gap between patient reading comprehension and the readability of patient education materials. J Fam Pract 1990; 31:533-8.

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Literacy and Reading Grade Levels It is recommended that health education materials developed for the general public should not exceed sixth to eighth grade levels. Most health information is written at a 10th grade level or higher Doak C, Doak L, Root J. Teaching patients with low literacy skills, 2nd ed, JB Lippincott Company, New York 1996.

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Why test for readability?

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http://www.hetemeel.com/einsteinform.php

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Krames Resources Provide essential health education suitable for lower literacy needs. Krames content is designed to maximize comprehension for all reading levels. Detailed artwork supports text written in everyday language. And information is organized into concise sections that help readers focus on the topic at hand. Plus, you can use video content to enhance learning and recall beyond written education.

Summary: This presentation is an expanded version of a webinar sponsored by Krames Patient Education. Low health literacy is a barrier to care, and populations with chronic diseases are at higher risk. Research suggests activation may help compensate for lower literacy skill. This series explores effective methods to increase patient activation and to address the needs of patients with low health literacy.

Tags: doug seubert health literacy communication communications activation patient engagement empower

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