ABSTRACT. Health literacy, as defined by the Affordable Care Act of 2010, Title V, is the degree to

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2 ABSTRACT Health literacy, as defined by the Affordable Care Act of 2010, Title V, is the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services to make appropriate health decisions (Health and Human Services, 2010). Poor health literacy can affect how patients understand their health care providers and their instructions. Results of the National Assessment of Adult Literacy found that 12% of adults are listed as proficient when it comes to health literacy (Kutner et al., 2006). Health literacy is a global and domestic issue. With more effective ways of measuring and assessing health literacy, at-risk groups such as minorities and the elderly can make informed decisions about their health. This will eliminate redundancy in services, and will save the United States (U.S.) billions of dollars annually (Vernon, Trujillo, Rosenbaum, & DeBuono, 2014). Models to improve literacy will be discussed in this paper along with tools that are currently in place to help providers and public health researchers better assess literacy levels. Recommendations to improve communication with patients will be described as well as resources for empowerment. Key words: health literacy, proficient ii

3 ACKNOWLEDGEMENTS At this moment I would like to thank the people who have helped advise me through my matriculation through the Public Health Leadership Program at UNC-Chapel Hill. This program has been a great experience, and I have grown so much professionally while going through the curriculum. Most importantly, I have grown as a person. The skills that I have developed and refined have improved how I relate to my family and friends. I have also been able to be a more inspiring leader to those who work under me. I am thankful for Susan Randolph, and the role she has played as an advisor and confidant. She always made herself available, and helped keep me on schedule with my classes. The effort that she has put into reviewing this paper is without measure, and I am beside myself with thanks to have such an involved advisor. My next set of thanks is reserved for Angel Alexander for being a peer reviewer of this paper. I have always valued your opinion as a colleague. As I move further into the field of public health, I hope that we can work together on future projects. You are a great representative for the Meharry School of Public Health, and I hope to one day return the favor. iii

4 TABLE OF CONTENTS Abstract... ii Acknowledgments... iii Table of Contents... iv List of Tables... vii List of Figures... viii CHAPTERS I. INTRODUCTION...1 Definitions...1 Health Literacy...1 Health Disparity...1 Relevance to Healthcare...2 Purpose of Paper...3 II. LITERATURE REVIEW...4 Current Literacy Statistics...4 U.S. Statistics...4 International Statistics...5 Populations at Risk...9 Ethnic Groups...9 Older Adults...9 Immigrant Populations...10 Low Income Groups...10 iv

5 Affected Groups...11 Patients...11 Providers...11 Economic Impact...12 National Costs...12 State Level Costs...13 Chronic Diseases...13 III. HEALTH LITERACY TOOLS...17 Assessing Health Literacy...17 TOFHLA...17 REALM...17 SAHSLA...18 SILS...19 Models to Improve Health Literacy...19 Nutbeam Model...20 Health Literate Care Model...22 IV. PROGRAMS FOCUSED ON HEALTH LITERACY...27 National Action Plan...27 Resources...29 Canadian Plan Language Service...29 Ask Me Universal Precautions Toolkit...30 v

6 V. RECOMMENDATIONS...31 Education...31 Policy...32 Collaborative Dialogue...33 References...35 vi

7 LIST OF TABLES Page 2.1 Number of Adults in America Below Basic Literacy Using NAAL Results Levels of Health Literacy AHRQ Universal Precautions Toolkit vii

8 LIST OF FIGURES Page 2.1 International Literacy Levels N.C. Projected Costs for Selected Chronic Diseases U.S. Projected Costs for Selected Chronic Diseases Health Literate Care Model viii

9 CHAPTER I INTRODUCTION Definitions Health Literacy Health literacy is a term that has a variety of accepted definitions that are used widely. According to the Affordable Care Act (ACA), Title V (2010), health literacy is defined as the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services to make appropriate health decisions (U.S. Department of Health and Human Services, 2010, p. 1252). This definition varies slightly from other definitions. The Institute of Medicine (IOM) defines health literacy as the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions (Institute of Medicine, 2004, para 3). The definitions are similar except health literacy is not defined by a person s ability to communicate health information (Marshall & Eberle, 2012) By adding the need to communicate to the definition of health literacy, the ACA has raised the bar for healthcare professionals to acknowledge cultural differences. The ability to communicate is affected by one s belief systems, communication styles, and understanding of health information, which is recognized by the U.S. Department of Health and Human Services (Eberle, 2013). Health Disparity According to the National Institutes of Health (2010), health disparity is defined as differences in the incidence, prevalence, mortality, and burden of diseases and other adverse health conditions that exist among specific population groups in the U.S. (para 2). The 1

10 international community uses terms such as health inequity and health inequality to define differences in health outcomes and conditions for population groups (Carter-Pokras & Baquet, 2002). These two terms have their own definitions and shape how health disparities are currently defined. Inequality is defined as a condition of being unequal or lack of equality as of opportunity, treatment or status (Carter-Pokras & Baquet, 2002, p. 427). Inequity indicates an ethical process where an injustice or unfairness is placed on a group. Within the public health community, disparity has taken on an implied meaning of injustice placed on a specific population group within the U.S. (Carter-Pokras & Baquet, 2002). It is important to examine differences in environment, access to and utilization of quality of care, and health status or outcome deserving of scrutiny, as well as to understand that what is unequal is not necessarily inequitable (Carter-Pokras & Baquet, 2002). Relevance to Healthcare The significance of health literacy among patient groups may not be intuitively understood as having a major impact on their health. How important is it for health professionals and experts to teach patients on health topics? According to a American Medical Association (AMA) report, poor health literacy is a stronger predictor of a person s health rather than age, income, employment status, education level, and race (Weiss, 2009). Poor health literacy can affect how patients understand their providers and their instructions. According to Weiss (2009), people had difficulty understanding common medical terms like: bowel, colon, tumor, or blood in the stool (p. 12). People with limited literacy skills also did not understand when their next appointment was scheduled (26%), and instructions to take medication on an empty stomach (42%) (Weiss, 2009). If almost half of the patients seen by physicians do not understand how to take their medication, this underscores the importance of 2

11 health literacy. Patients may not be satisfied with their care because they have misunderstood their medical instructions, and are not aware of it. There has to be two way exchange of information and response by physician and patient. Purpose of Paper This paper will discuss health literacy in the U.S. and its importance in achieving a healthier population. With the introduction of the ACA, people who have never interacted with the health community or have not done so in a long time will be seeking health care. By understanding the impact of health literacy, the medical community and the public health communities can engage these new patients to be satisfied consumers of health services. Redundancy in treatments and frustrations of the healthcare providers and patients can be decreased, leading to fewer office visits and shorter treatment regimens for ephemeral conditions. Patients need to feel empowered and in charge of their health. It is essential that patients can demonstrate effective communication on health topics. Models to improve health literacy, such as Nutbeam and the Health Literate Care models, will be discussed in this paper along with tools from the Agency for Healthcare Research and Quality and the Department of Health and Human Services. 3

12 CHAPTER II LITERATURE REVIEW Current Literacy Statistics U.S. Statistics In 2003, a National Assessment of Adult Literacy (NAAL) was conducted in the U.S. to determine adult literacy. Along with this assessment, tools were designed to evaluate health literacy in adults (age 16 and older). The NAAL measured literacy through assigned tasks that the participants had to complete. The scales for health literacy determination were guided by the definition of health literacy used by IOM and Healthy People 2010 (Kutner, Greenberg, Jin, & Paulsen, 2006). The NAAL classified health literacy tasks as a prose, document, or quantitative task. Results on the health literacy scale were assigned as: Below Basic, Basic, Intermediate, and Proficient (Kutner et al., 2006). Someone who scored Below Basic could be non-literate in the English language, and only capable of performing simple addition when the information is very familiar. An adult who scored at Basic level would have the skills to perform simple everyday literacy tasks. This person would be able to read and understand simple information provided in documents. Intermediate skills would mean a person would be able to handle fairly challenging literacy activities. A person at the Intermediate level of literacy will be able to read through complex documents and have some understanding of the information gathered. Proficient means that the person can take abstract quantitative information to solve problems involving multiple steps, be able to read high content text, and make conclusions about the information given (Kutner et al., 2006). 4

13 Findings from the assessment showed that overall 53% of adults showed Intermediate health literacy (Kutner et al., 2006). Twelve percent of adults were Proficient in health literacy. The remaining population scored at Basic or Below Basic levels in health literacy. Results of the NAAL highlight some differences in health literacy among defined demographic groups. Women on average showed a higher level of health literacy than men. Adults who had higher levels of education had higher average levels. Forty-nine percent of adults without a GED or high school diploma had Below Basic health literacy (Kutner et al., 2006). Of the entire U.S. population, 15% of adults 25 years and older (around 31 million Americans) never received a high school diploma (Ryan & Siebens, 2012). Since this study is representative of the U.S. population, there are over 15 million adults who will score at Below Basic for health literacy (Table 2.1). This number drops to only 15% for adults who obtained a high school diploma, and 3% for adults who obtained a bachelor s degree (Kutner et al., 2006). International Statistics According to the World Health Organization (WHO) (2014), health literacy is cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health (para 1). Even though health literacy may have a different definition in the U.S., it is a concept that is ubiquitous to the international community and needs to be addressed. The World Bank World Development Report says that access to education is a primary action that can be taken to improve public health in developing nations. Research has shown that women who are better educated are more likely to apply their knowledge to the care of their family. This impact has been shown to have an intergenerational effect. Daughters with mothers who are educated do 5

14 TABLE 2.1 NUMBER OF ADULTS IN AMERICA BELOW BASIC LITERACY USING NAAL RESULTS 2013 U.S. Census Data Indicators Total Population Number % Age Less than 25 Years 111,504, % 25 Years and Older 205,810, % Education Level No High School Diploma 30,871, % High School Diploma 269,7171, % Literacy Level of Adults without High School Diploma/GED Below Basic 15,127, % Basic; Intermediate, Proficient 15,744, % Source: Kutner et al., 2006; Ryan & Siebens,

15 remarkably better on key social indicators and are more empowered (Nutbeam & Kickbusch, 2000). Health literacy can be measured in ways similar to general literacy. It can be recorded at the individual, organizational, community, and population levels. A survey conducted by the WHO on European health literacy reported that nearly half of all Europeans showed inadequate or problematic health literacy skills. Bulgaria has the greatest percentage of its population with inadequate health literacy (27%), and the Netherlands showed the lowest percentage of people with inadequate health literacy (2%) (Figure 2.1) (World Health Organization, 2013). Assessing health literacy rates for all developing and developed nations is an arduous task. It can be encumbered by social matters such as politics and religion. If a country has a high rate of poor health literacy, it can be extrapolated from the reading literacy rates that a country may not score well when dealing with basic understanding of health information and the ability to communicate health concepts. According to the United Nations Educational, Scientific and Cultural Organization (UNESCO) Institute of Statistics (UIS), 16% of the world s adult population lack basic literacy skills. Baker and colleagues (1996) found a correlation with inadequate health literacy when measured by reading fluency and increased mortality rates. Using Medicare plan members, there was a 50 to 80% increase in mortality risks. This mortality risk is being observed in a nation where around 99% of its people can read and write (Central Intelligence Agency, 2014). Of the 22 plus countries in the WHO-Eastern Mediterranean Region, at least half of these countries have literacy rates below the international average of 79%. Jordan is projected to have a literacy rate of 94% by 2010, which is still below the literacy rate seen in the U.S. (Kanj & Mitic, 2009). 7

16 FIGURE 2.1 INTERNATIONAL LITERACY LEVELS Source: World Health Organization,

17 Populations at Risk Populations at risk need to be defined to better understand the kinds of people most affected by lower literacy. This information will help to test theories and better refine health programs to be beneficial for a specific group. Health literacy is no different; there are groups that show higher levels of proficiency when it comes to literacy, and other groups that need to be targeted aggressively before their illiteracy or lack of proficiency becomes a systematic form of neglect by the health community. Ethnic Groups Among racial/ ethnic groups, Hispanic adults show lower than average health literacy than adults in any other group. Caucasian and Asian/Pacific Islander adults had the highest average. Only 9% of White respondents scored at the lowest (Below Basic) level. Kutner et al. (2006) reported that 24% of Blacks, 41% of Hispanics, 13% of Asians, and 25% of American Indian and Native Alaskan respondents scored at the "Below Basic" level. Older Adults When looking at age groups, adults who were 65 years and older showed the lowest levels of health literacy compared to adults in younger age groups. Within the same cohort, twothirds of adults 65 and older are not able to comprehend prescription information (Eberle, 2013). This group is a good example of how lack of literacy may lead to redundancy in health services and prolonged treatment regimens. People 65 and older make nearly twice as many physician office visits per year than adults 45 to 65 years of age (Eberle, 2013). As the country s workforce moves into retirement, the Baby Boomers who move into this age group will live longer and will be seeking more health services. The Centers for Disease Control and Prevention (CDC) estimates that by year 2030, over 71 million people will be over age 65 in the U.S. (Eberle, 9

18 2013). If the trend does not change, then it means that over 46 million of these people age 65 and older will not be able to properly take their prescribed medications. Immigrant Populations People who have recently moved to the U.S. are at risk of becoming a disenfranchised group when it comes to health literacy. The immigrants migrating to the U.S. are not at risk from a lack of formal education, but because of barriers when it comes to language. In the U.S around 12% of the population is immigrant (Derose, Escarce, & Lurie, 2007). Out of this group, over 53% of immigrants arise from Latin America, 28% from Asia, and 12% from Europe (Grieco et al., 2012). According to the ACA definition of health literacy, a person needs to be able to understand and communicate health information. Results from the NAAL found that people who learned Spanish before starting school showed the lowest levels of health literacy (Kutner et al., 2006). Low Income Groups Rural Americans are most vulnerable for low health literacy due to higher levels of poverty (Rural Assistance Center, 2014). Adults living below the poverty level score the lowest when it comes to health literacy, while adults 175% or more above the poverty line have scored the highest (Kutner et al., 2006). There are many things to consider when it comes to poverty and health literacy. People who are well above the poverty line are typically more educated than those who live below or at poverty. They may also have a better social network of people from whom they receive information. 10

19 Affected Groups Patients Many patients have difficulty communicating with their physician due to poor understanding of health vocabulary, and limited health knowledge (Parker, 2000). According to the National Adult Literacy Survey, around 40 million Americans are functionally illiterate. To be considered functionally illiterate people, would not be able to use printed or written material to achieve a objective or read with a purpose (Kutner et al., 2006). The highest rates of illiteracy are among the elderly population who are frequent consumers of health services in the U.S. When taking into account health status and socioeconomic indicators, patients with inadequate literacy are twice as likely to have been hospitalized within a given year (Parker, 2000). There are six recurring themes that illustrate patient difficulty in utilizing healthcare: navigating the healthcare system, completing forms, following medication instructions, interacting with providers, making appointments, and using coping strategies (Baker et al., 1996). Patient-centered care needs to focus on these themes to improve communication for the consumers of healthcare. Providers Physicians tend to rely on easy to digest information to bridge the gap of any miscommunication between themselves and patients. However, if patients are illiterate, then they may not find the information given to them as helpful. It may be detrimental to the relationship because the patients are reminded that they are deficient readers and will feel even more isolated from the healthcare provider. As information becomes more diffuse, healthcare workers become more reliant on printed material and online resources for people to stay current on health. In the same NAAL study, two-thirds of respondents who showed the lowest skill level have 11

20 disillusioned themselves into believing they are well or very well readers (Kutner et al., 2006). Another issue related to patient-provider communication is the amount of background information on an issue that a provider will give, which will leave patients feeling overwhelmed. Instead, the provider should focus on essential information that patients can use (Parker, 2000). Hospital professionals should not assume that all patients are near or at levels of proficiency when it comes to health literacy. Clinicians and hospital staff should pick up on cues when patients fill out a form incorrectly (Parker, 2000). Instead of administration staff and nurses handing the forms back, the healthcare worker should make notes of the mistake and on subsequent visits begin to identify if the patient(s) is illiterate. Another clue for healthcare workers would be if the patient(s) is filling out surveys and all the questions have been marked identically. To address this issue, healthcare workers should ask the questions orally to the patients and mark the responses. Economic Impact National Costs Healthcare in the U.S. has become a major industry that contributes significantly to the gross domestic product of the nation. With healthcare being a vital industry not only in terms of capital produced, it is also the only industry that is vital to keeping the American public healthy and productive. Since it plays such an important role, it is imperative that government leaders, health administrators, and public health leaders ensure that the healthcare industry is effectively serving its customers. Poor health literacy undermines the ability of the healthcare industry to run optimally. Low health literacy is estimated to cost the country up to $238 billion annually, accounting for 12

21 17% of all personal healthcare expenditures (Vernon et al., 2014). The money attributed to low health literacy is of such magnitude that it would have been enough to insure every one of the 47 million Americans who were uninsured before the introduction of the ACA (Vernon et al., 2014). State Level Costs Chronic disease in the U.S. is the most costly and preventable of all health problems (Centers for Disease Control and Prevention [CDC], 2013). With the U.S. Baby Boomer generation entering into the later years of life, a growing number of chronic conditions will place a burden on state and national budgets. Figure 2.2 illustrates the cost chronic conditions such as cancer, diabetes, cardiovascular disease (CVD), and asthma will have on the N.C. state budgets The per capita cost in N.C. to treat asthma, cancer, diabetes, and total CVD is estimated at $17,080 (CDC, 2013). The entire state has a gross domestic product per capita of $38,847 according to 2009 N.C. commerce reports (Bunn & Ramirez, 2011). By the year 2020, N.C. spending on chronic conditions will rise 80%, which is higher than the projected 74% increase for the entire country (CDC, 2013). For the entire country, costs associated with CVD are estimated to be around $600 billion dollars by the year 2020 (Figure 2.3). Chronic Diseases The costs of treating chronic diseases are staggering, and poor health literacy will only exacerbate the situation. Poor health literacy will impact cancer screening programs effectiveness by preventing patients from being diagnosed early to improve survival rates (Eberle, 2013). This can lead to patients being diagnosed in later stages, and having to face more aggressive and costly forms of treatment. Patients may not understand the treatment options nor make the best decisions about treatment or reject treatment all together. Patients with asthma and poor health 13

22 Cost (in millions) FIGURE 2.2 N.C. PROJECTED COSTS FOR SELECTED CHRONIC DISEASES $25,000 $20,000 $15,000 $10,000 Asthma Total CVD Cancer Diabetes $5,000 $ Source: Centers for Disease Control and Prevention,

23 Cost (in millions) FIGURE 2.3 U.S. PROJECTED COSTS FOR SELECTED CHRONIC DISEASES $700,000 $600,000 $500,000 $400,000 $300,000 $200,000 Asthma Cancer Total CVD Diabetes $100,000 $ Source: Centers for Disease Control and Prevention,

24 literacy will improperly use their metered-dose inhaler (Eberle, 2013). Half of the patients with poor reading skills will go to the emergency department in their local hospital when having an asthma attack. One third of these same patients knew that they should follow up with their doctor if the asthma was not symptomatic as compared with 90% of literate patients who have asthma (Eberle, 2013). Patients with Type 2 diabetes and inadequate health literacy have shown less control of their glycemic levels and higher rates of retinopathy. Forty eight percent of patients with hypertension or diabetes did not have knowledge of their disease or modifications that they could make to manage their condition (Eberle, 2013). 16

25 CHAPTER III HEALTH LITERACY TOOLS Assessing Health Literacy TOFHLA Test of Functional Health Literacy in Adults (TOFHLA) is the first tool that could measure a patient s health literacy and assess if the patient is able to perform health-related tasks such as reading comprehension. TOFHLA utilizes actual health-related materials such as forms, prescription labels, and appointment slips. When TOFHLA is administered, it can determine if the patient is able to comprehend directions on taking medication, monitoring glucose levels, and scheduling the next doctor appointment (Parker, 2000). A downside of TOFHLA is that the unabridged form takes around 22 minutes to administer. A shorter version (s-tofhla) of the assessment can be done in 12 minutes, and can be utilized as a valid measuring tool of the functional health literacy of a patient (Parker, 2000). The shorter version, taking questions from the reading comprehension portion of the full assessment, has 36 items to answer and responses are scored as inadequate, marginal, or adequate based on foundational knowledge and comprehension of health information (N.C. Program on Health Literacy, 2013). REALM Rapid Estimate of Adult Literacy in Medicine (REALM) is a word recognition test that can be completed in less than 5 minutes. The assessment starts with a set of easy to pronounce medical words, and as words are read through the list, they become increasingly more difficult to pronounce. Only 5 seconds is allowed to correctly pronounce the word. If the person is unable to do so, then the person has to move on to the next word in the list (Agency for Healthcare 17

26 Research and Quality [AHRQ], 2009). Since this test provides an estimate of a person s literacy level, it is not able to provide quantifiable information to the clinician (Parker, 2000). SAHLSA The Latino population is the fastest growing ethnic group in the U.S. With over half of immigrants arriving to the U.S. being of Latin American descent, the healthcare community needs to have ways of assessing their health literacy. Therefore, health professionals developed an assessment for people who speak Spanish. The Short Assessment of Health Literacy for Spanish-speaking Adults (SAHLSA) is a word recognition assessment tool that is similar in design to REALM (Lee, Bender, Ruiz, & Cho, 2006). A limitation of using REALM to assess the health literacy of Spanish speaking people is that a high level could be scored if the letters were recognized. The Spanish language has regular phoneme-grapheme correspondence, which means that one sound is usually represented by one letter. This design of the Spanish language may lead a test administrator to believe that the correlation between reading ability and comprehension level are dependent, when in actuality this is not true (Lee et al., 2006). SAHLSA was developed to accurately assess health literacy by using the 66-term part of the REALM test as one component of the assessment. The patient is also given a set of multiple choice questions. The interviewer asks a question, and the respondent has the key (correct choice) and a distractor (incorrect choice) (Lee et al., 2006). The person taking the test would have to know which choice most appropriately fits given the context in which the question was asked. SAHLSA is ideal for administering in a clinical setting because it can be given in a brief amount of time. There is a Spanish version of TOFHLA, but it takes a longer time to administer. Another assessment tool, the Instrument for Diagnosis of Reading (IDL), has been translated into 18

27 Spanish. This tool tests a person s comprehension of written text. However, it is best suited for the medical research setting because it can take minutes to administer (Lee et al., 2006; N.C. Program on Health Literacy, 2013). SILS Many practitioners do not want to rely on staff intuition to determine if a patient is health literate. A lot of adults are good at masking their deficiencies; practitioners may need more than the minutes spent in the office to pick up on these cues. Clinicians need a tool that allows them to screen patients who may need to take REALM, TOFHLA, or SAHLSA assessment on their next visit so that time can be allotted for theses assessments to be properly administered. Single Item Literacy Screener (SILS) is not an assessment but a simple screening instrument to identify a patient with limited ability to read health-related materials (Morris, Maclean, Chew, & Littenberg, 2006). The instrument asks one question: How often do you need to have someone help you when you read instructions, pamphlets, or other written material from your doctor or pharmacy? (Morris et al., 2006, p. 2). The patient is scored on a scale of 1 to 5, where 1 is never and 5 is always. Based on these results, the practitioner can determine whether to administer the TOFHLA, REALM, or SAHLSA on the patient s next visit. This instrument was designed to identify if an adult needs help with printed material, and to identify who may be susceptible to poor health literacy (Morris et al., 2006). Giving a 95% confidence interval, SILS has been found to be 54% sensitive and 83% specific in detecting limited reading ability (Morris et al., 2006). Models to Improve Health Literacy Health literacy has a long-term impact on the health of susceptible groups, the economy of a nation, and the effectiveness of healthcare in treating chronic conditions. There are two 19

28 models that seek to mitigate the impact of poor health literacy. The Nutbeam Model, which was first proposed in 2000, focuses on three sequential levels of health literacy. The Health Literate Care Model, which uses a system approach, promotes the integration of health literacy practices into planning and operations of the healthcare facility. Nutbeam Model According to Nutbeam (2000), improving health literacy meant more than transmitting information, and developing skills to be able to read pamphlets and successfully make appointments. By improving peoples access to health information and their capacity to use it effectively, it is argued that improved health literacy is critical to empowerment. (p. 259) With previous models, health literacy and literacy have been closely linked as two functions that need to be in place for a patient to properly utilize healthcare services. Nutbeam and Kickbusch (2000) argue that high literacy does not a guarantee that a person will respond to health education and engage in more meaningful forms of communication. Outside of more proficient literacy, health education could serve to raise awareness of social, economic, and environmental determinants of health; and that this awareness could lead to the modification of these determinants (Nutbeam & Kickbusch, 2000). There are three levels to the proposed Nutbeam Model of health literacy: Level 1 Literature should use relevant examples and avoid using medical terminology that might decrease reading comprehension (Mitchell & Begoray, 2010). Functional health literacy should benefit the individual by ensuring that education is in place, so that communication about health risks and use of the health system are properly understood. Activities geared toward functional health literacy do not encourage autonomy or focus on the 20

29 person s ability to interact with health professionals (Nutbeam, 2000). Functional health literacy only makes it possible for information to be transmitted to the person, or in some instances toward an entire population (Mitchell & Begoray, 2010). Under this functional level of health literacy, literature and technology applications should use relevant examples (pictures or talkingtouch screens) that overcome cultural barriers and avoid using medical terminology that might decrease individual reading comprehension (Mitchell & Begoray, 2010). Level 2 Level 2 health literacy is focused on improving a person s capacity to be autonomous and make decisions or act independently on knowledge given (Nutbeam, 2000). The person is asked to use advanced cognitive, literacy, and social skills for participatory activities (Mitchell & Begoray, 2010). Someone who appropriately applies these advanced skills will be able to better manage health issues, seek out social networks for support and discuss strategies, and seek out health information. Interactive health literacy is best applied as an individual benefit to give the patient more confidence, but not necessarily empowered (Nutbeam, 2000). Level 3 Critical health literacy helps develop cognitive skills that are directed toward supporting not only the individual but also social and political action (Nutbeam, 2000). A person who can critically apply health literacy skills can extend the benefits to make improvements in the community. By targeting health education to support healthy lifestyle choices and more effective use of health services, the individual is empowered to make clear choices and take decisive actions (Mitchell & Begoray, 2010). With the Nutbeam Model, the patient will develop the key components of interactive and critical health literacy skills which allows them effective movement through the healthcare system (Nutbeam, 2000). Nutbeam wanted to introduce that some practices of health literacy initiatives/programs are not effective at covering the different levels of health literacy as believed. Simply making a 21

30 person literate does not correlate to empowerment. Helping a patient develop social skills does not necessarily mean that he/she will understand how to take medication or to properly fill out medical forms. The Nutbeam model with its different levels of health literacy will aid public health professionals in implementing health literacy initiatives. Table 3.1 illustrates the different levels of the Nutbeam model along with examples of educational activity and outcomes. Health Literate Care Model In 2013, a systems approach to health literacy was published in the Health Affairs journal (Koh, Brach, Harris, & Parchman, 2013). This new model, termed Health Literate Care Model, was adapted from a long standing Chronic Care Model. The Health Literate Care Model looks at health literacy as something the patient is at risk of not having. The patient is assumed to not fully understand his/her health and does not have any basis to deal or manage a health condition. Given that only 12% of adult Americans are proficient in completing health related tasks, the model takes into account that most patients will need some kind of intervention (Koh et al., 2013). The Health Literacy Care Model sees health literacy as an issue that needs to be improved by the organizations, and not just solely a responsibility of the individual. The IOM coined the term health literate organization, which means that the organization will support the patient as he/she navigates, understands, and uses information and services for the betterment of his/her health. A health literate organization needs a commitment from leadership, and follow-up on literacy activities to ensure the organization is achieving the desired outcomes. To help organizations that want to become health literate organizations, the AHRQ released a toolkit in 2010 that will increase the awareness of providers about health literacy and how to properly address it (Table 3.2) (Koh et al., 2013). 22

31 TABLE 3.1 LEVELS OF HEALTH LITERACY Health Literacy Level and Educational Goal Functional health literacy: communication of information Interactive health literacy: development of personal skills Critical health literacy: personal and community empowerment Content Outcome Examples of Individual Benefit Community/ Social Benefit Educational Activity Transmission of factual information on health risks and health services utilization As above and opportunities to develop skills in a supportive environment As above and provision of information on social and economic determinants of health, and opportunities to achieve policy and/or Improved knowledge of risks and health services, compliance with prescribed actions Improved capacity to act independently on knowledge, improved motivation and self-confidence Improved individual resilience to social and economic adversity Increased participation in population health programs (screening immunization) Improved capacity to influence social norms, interact with social groups Improved capacity to act on social and economic determinants of health, improved community empowerment Transmit information through existing channels, opportunistic inter-personal contact, and available media Tailor health communication to specific need; facilitation of community selfhelp and social support groups; combine different channels for communication Provision of technical advice to support community action, advocacy communication to community leaders and politicians; facilitate community development Source: Nutbeam,

32 TABLE 3.2 AHRQ UNIVERSAL PRECAUTIONS TOOLKIT Tools to Start on the Path to Improvement Tool 1: Form a Team Tool 2: Assess Your Practice Tool 3: Raise Awareness Tools to Improve Spoken Communication Tool 4: Tips for Communicating Clearly Tool 5: The Teach-Back Method Tool 6: Follow up with Patients Tool 7: Telephone Considerations Tool 8: Brown Bag Medication Review Tool 9: How to Address Language Differences Tool 10: Culture & Other Considerations Tools to Improve Written Communication Tool 11: Design Easy-to-Read Material Tool 12: Use Health Education Tool 13: Welcome Patients: Helpful Attitudes, Signs and More Tools to Improve Self-Management and Empowerment Tool 14: Encourage Questions Tool 15: Make Action Plans Tool 16: Improve Medication Adherence and Accuracy Tool 17: Get Patient Feedback Tools to Improve Supportive Systems Tool 18: Link Patients to Non-Medical Support Tool 19: Medication Resources Tool 20: Use Health and Literacy Resources in the Community Source: Koh et al.,

33 The Health Literate Care Model can be time consuming for organizations to implement. However, this model can be more efficient by improving patient engagement and avoiding duplication of information over time. By utilizing the AHRQ toolkit and by implementing the Care Model, an organization can be more effective with its strategies. The Health Literate Care Model will merge the six main components of the Care Model, and the AHRQ health literate toolkit to guide its application in an organization. Under this model, health leaders will approach health literacy as a continuous quality improvement objective. For example, by utilizing the assessment tool of the toolkit, staff members are consciously aware if the patient needs are being met and are constantly engaging the patient for feedback (Koh et al., 2013). As part of communication, providers ask patients to provide their interpretation of the information they received and how they plan to act on it. Using this data, the health team can be proactive on subsequent visits in scheduling interpreters, calling patients to go over laboratory results, and following up if they expressed difficulty in understanding complex medication regimens (Koh et al., 2013). With this kind of active engagement from healthcare staff, the Health Literate Care Model is a living model that is able to adapt to the patients as they move through the health system. An illustration of how an organization can structure itself to improve patient outcomes with the Health Literate Care Model is provided (Figure 3.1). This model not only ensures that the patient is given information, but also constantly reevaluates how information is being delivered to better anticipate and provide more tailored and efficient services. 25

34 FIGURE 3.1 HEALTH LITERATE CARE MODEL Source: Koh et al.,

35 CHAPTER IV PROGRAMS FOCUSED ON HEALTH LITERACY National Action Plan According to the U.S. Department of Health and Human Services (2010), nine out of ten adults have difficulty using everyday health information that is widely available through a variety of different forms of media (p. 1). Poor health literacy is pervasive and the cost to the U.S. has been estimated in the hundreds of billions of dollars each year (Vernon et al., 2014). If the costs are prospectively adjusted then poor health literacy will cost the U.S. trillions of dollars (U.S. Department of Health and Human Services, 2010). The National Action Plan on Health Literacy was drafted to collaboratively engage organizations, professionals, communities, and individuals to improve health literacy. The plan works on two premises: (1) everyone has the right to health information that helps them make informed decisions and (2) health services should be delivered in ways that are understandable and beneficial to health, longevity, and quality of life (U.S. Department of Health and Human Services, 2010). Based on these two premises, the National Action Plan established seven goals to achieving health literacy. They are: 1. Develop and disseminate health and safety information that is accurate, accessible, and actionable. 2. Promote changes in the health care system that improve health information, communication, informed decision making, and access to health services. 27

36 3. Incorporate accurate, standards-based, and developmentally appropriate health and science information and curricula in child care and education through the university level. 4. Support and expand local efforts to provide adult education, English language instruction, and culturally and linguistically appropriate health information services in the community. 5. Build partnerships, develop guidance, and change policies. 6. Increase basic research and the development, implementation, and evaluation of practices and interventions to improve health literacy. 7. Increase the dissemination and use of evidence-based health literacy practices and interventions. (U.S. Department of Health and Human Services, 2010, p. 1) Some of these goals have already been implemented prior to the development of this plan. However they may not be operating effectively. For example, Goal 1 can be difficult to achieve because health and safety content can be created and disseminated easily using current technology without knowing if sources are credible. However, it is important for health officials to understand that a considerable number of people, who may be affected by poor health literacy, may not be using current technologies to stay up to date on health information. While it is important that leaders and organizations provide information through current media, they need to realize that vulnerable populations may still engage in traditional forms of media such as news broadcasts, local papers, or radio as their source of reliable information. 28

37 Resources As organizations and public health leaders look for ways to concisely address health literacy, there are different strategies and approaches that can be used. Health professionals should know the objective of the intervention. For example, if a clinical practitioner believes that patient forms or questionnaires might be too complex, then a simple language document might be better to gather more accurate information. Canadian Plain Language Service The Canadian Public Health System has a Plain Language Service that was cited in Healthy People 2010 as a model for patient forms. The Plain Language Service uses 4 components to judge if a document is written at the appropriate reader level by: 1. Revising vocabulary to make it simpler, 2. Reducing sentence and list lengths, 3. Changing the tone of the text, and 4. Explaining concepts (Canadian Public Health Leader, n.d.). Ask Me 3 If clinicians are looking for more robust communication with their patients, then they may want to utilize the Ask Me 3 campaign. This program encourages patients to ask their doctors three questions: 1. What is my main problem? 2. What do I need to do? 3. Why is it important for me to do this? (National Patient Safety Foundation, 2014) These questions help patients understand exactly what their problems are instead of just being given a diagnosis and a prescribed treatment regimen. The patients take an active role in their 29

38 health management by asking what steps they need to take to better manage their condition. It also removes a barrier perceived by a lot of patients that their condition is not serious, and that it does not have to be dealt with immediately. Universal Precautions Toolkit If an organization or private practice wants to take a systems approach to health literacy, and do a bottom-up restructuring, the Health Literacy Universal Precautions Toolkit is a good resource to help identify, assess, and implement areas of focus. This toolkit can be utilized independently of the Care Model. There are 20 tools provided in the toolkit to help with patient engagement on all literacy levels (refer to Table 3.2). The toolkit can be used by healthcare staff, and it is broken down into segments to help with implementation. When first using the Universal Precautions Toolkit there is Quick Start Guide that has a 6 minute video produced by the American College of Physicians Foundation that addresses the importance of health literacy. An organization can use a quick assessment tool to see where they can begin their health literacy interventions and how the Universal Precautions Toolkit can help address them. The Path to Improvement section of the toolkit provides 6 essential steps to implementation in the clinical practice. The 20 tools that are listed helps identify areas of improvement to provide a more responsive, efficient, and tailored health literacy program. At the end of the Universal Precautions Toolkit is an appendix that provides forms, worksheets, and presentations that support the implementation of the toolkit for more effective health literacy programs (Koh et al., 2013). 30

39 CHAPTER V RECOMMENDATIONS Education When educating patients and organizations, healthcare staff need to take time to educate themselves about how to best relate information to the patients. This can be done through community engagement activities such as sponsoring health events or conducting screening events with churches or schools. By collaborating with these civic organizations, information will be gained on how events are structured and information is tailored to reach the targeted population. The Health Literate Care Model encourages an organization to be reflective and adaptive. The model is a constantly improving system where the professionals are responsive to the patients (Koh et al., 2013). An organization that is striving to follow this model should tailor information to best engage the target population(s). By utilizing the Health Literate Care Model, organizations could provide patients with options of how they prefer to receive information such as through print material, social discussion boards, or text alerts. In addition, the organizations should engage in communitybased participatory research before initiating health literacy programs. Different strategies are needed based on the population group. For example, the strategy needed to improve literacy among Spanish speaking groups may not work effectively with Asian, African-American, or Native American groups. According to the U.S. Department of Health and Human Services (2010) National Action Plan, studies have demonstrated that targeted approaches for communication can improve self-management and health outcomes for patients with limited literacy (p. 11). Using this model, a health literate organization has an opportunity to gather data 31

40 with all patients to become more effective at developing programs to improve health literacy within an entire community. Policy There are many areas for improvement within the U.S. As new policies and laws are introduced to provide coverage to disenfranchised groups, there is an ever pressing need for healthcare organizations to position themselves as a service that is open to this new group of consumers. Poor health literacy has significant consequences on the economy, the ability of a community to thrive, and the impact of chronic disease on peoples quality of life. With only 12% of Americans showing proficiency with health literacy, this problem persists within everyday lives (Kutner et al., 2006). Simple things like having nutrition facts on food labels may not have the intended effect policy makers desired when first introduced. With 22% of the U.S. population having only basic health literacy skills, people may not have the proper skills to make informed judgments about their diet based on the information listed on food labels (Weiss, 2009). If people are not able to manage a healthy diet with proper food choices, then the cost of poor health literacy on this nation will result in a unhealthy workforce that will not be able to compete globally. To address health literacy, it is important to remember that health literacy is a societal issue, and not solely the responsibility of the patient. The costs associated with improving health literacy should be weighed against the impact of ignoring poor health literacy (U.S. Department of Health and Human Services, 2010). The National Action Plan committee developed five main themes to consider when addressing health literacy. They are: 1. Sharing must share across disciplinary and organizational boundaries, information, findings, program successes, and areas for improvement. 32