Improving Health Literacy: Role of Executives, Administrators, and Researchers, Lecture notes of Communication

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National Action Plan

to Improve

Health Literacy

Suggested citation: U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion. (2010). National Action Plan to Improve Health Literacy. Washington, DC: Author.

F o r e w o r d

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So many large and small steps are at our disposal. The time to act is at hand. This volume sets forth thoughtful, achievable objectives and describes what is required to create and sustain a health literate Nation.

Accordingly, I wholeheartedly endorse this thoughtful document and the blueprint it offers. Working cooperatively, let us realize the vision it offers in the lives of people everywhere.

Sincerely,

Howard K. Koh, M.D., M.P.H. Assistant Secretary for Health

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Contents

Foreword ..........................................................................................................................................iii

Contents ............................................................................................................................................v

Summary ...........................................................................................................................................

Introduction ...................................................................................................................................... Understanding and Defining Health Literacy ......................................................................................... 4

Section 1: Limited Health Literacy as a Public Health Problem ............................................................. 7 Prevalence of Limited Health Literacy (Epidemiology) .......................................................................... 7 Health Literacy and Outcomes ............................................................................................................... 9 Innovative Approaches To Improve Health Literacy ............................................................................ 10

Section 2: Developing a Societywide Health Response ...................................................................... 13

Section 3: Vision and Goals for the Future ........................................................................................ 16 Goal 1—Develop and Disseminate Health and Safety Information That Is Accurate, Accessible, and Actionable ............................................................................................................ 18 Goal 2—Promote Changes in the Health Care Delivery System That Improve Health Information, Communication, Informed Decisionmaking, and Access to Health Services ........... 25 Goal 3—Incorporate Accurate, Standards-Based, and Developmentally Appropriate Health and Science Information and Curricula in Child Care and Education Through the University Level .............................................................................................................................. 32 Goal 4—Support and Expand Local Efforts To Provide Adult Education, English Language Instruction, and Culturally and Linguistically Appropriate Health Information Services in the Community .............................................................................................................................. 35 Goal 5—Build Partnerships, Develop Guidance, and Change Policies ................................................. 39 Goal 6—Increase Basic Research and the Development, Implementation, and Evaluation of Practices and Interventions To Improve Health Literacy ............................................................... 43 Goal 7—Increase the Dissemination and Use of Evidence-Based Health Literacy Practices and Interventions .................................................................................................................................. 45

Section 4: Creating and Sustaining National Action ........................................................................... 48

Appendix A: References ................................................................................................................... 50

Appendix B: What You Can Do To Improve Health Literacy................................................................ 59

Appendix C: Acknowledgments ........................................................................................................ 63

S u m m a r y

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

Many of the strategies highlight actions that particular organizations or professions can take to further these goals. It will take everyone working together in a linked and coordinated manner to improve access to accurate and actionable health information and usable health services. By focusing on health literacy issues and working together, we can improve the accessibility, quality, and safety of health care; reduce costs; and improve the health and quality of life of millions of people in the United States.

Introduction

E

very day, people confront situations that involve life-changing decisions about their health. These decisions are made in such places as grocery and drug stores, workplaces, playgrounds, doctors’ offices, clinics and hospitals, and around the kitchen table. Only some of these decisions are made when patients and their health care providers are in a face-to-face consultation; many more are made when people are on their own and dealing with often unfamiliar and complex information. For example, they must figure out what type of health insurance they should choose; how much medicine to give a sick child, using the directions printed on a box; or how to respond to a warning about a severe public health outbreak in their area. People need information they can understand and use to make informed decisions and take actions that protect and promote their health. Yet two decades of research indicate that today’s health information is presented in a way that isn’t usable by the average adult. Nearly 9 out of 10 adults have difficulty using the everyday health information that is routinely available in our health care facilities, retail outlets, media, and communities.^1 ,^2 ,^3

At the same time that health-related decisions are becoming more complex, the economic pressure of rising health care costs and the growing prevalence of chronic disease are creating a shift toward consumer-driven health care, where consumers are the primary decisionmaker of the health care they receive. Public policy is increasingly focused on the role of consumers (the public) in managing their own health in partnership with health care providers.^1 ,^6 To make appropriate health decisions and act on them, people must locate health information, evaluate the information for credibility and quality, and analyze risks and benefits. Underlying this shift toward consumer-driven care are assumptions about people’s knowledge and skills that contradict what we know about health literacy in the United States.

This National Action Plan to Improve Health Literacy seeks to engage all people in a linked, multilevel effort to create a health literate society. Healthy People 2010 defines health literacy as the capacity to “obtain, process, and understand basic health information and services needed to make appropriate health decisions.”^4 The goals and strategies support and will help achieve Healthy People objectives in health literacy and related areas, such as chronic diseases. Healthy People is a set of health objectives for the Nation to achieve over a decade. The objectives are informed by the best scientific knowledge and designed to measure the Nation’s health over time.

The action plan identifies the overarching goals and highest priority strategies that we should pursue to create a health literate society. Health literacy is part of a person-centered care process and essential to the delivery of cost-effective, safe, and high-quality health services.^7 ,^8 The expected results of striving for

I n t r o d u c t i o n

The skills of individuals are an important part of health literacy, but health literacy is not only about individuals’ skills. Health literacy in the U.S. reflects what health systems and professionals do to make health information and services understandable and actionable. Professionals, the media, and public and private sector organizations often present information in ways that make it difficult to understand and act on. Publicly available health information can also be incomplete or inaccurate. Reports from HHS and the Institute of Medicine (IOM) highlight a key component of health literacy: the interaction between the skills of individuals and the requirements and assumptions of health and social systems.^1 ,^9 Consequently, the skills of health professionals, the media, and government and private sector agencies to provide health information in a manner appropriate to their audiences are as equally important as an individual’s skills.^1 The interactions between laypersons and professionals influence the health literacy of individuals and society.

Health literacy and literacy are closely related but not identical. Literacy is defined as a set of reading, writing, basic math, speech, and comprehension skills. Numeracy, which is part of literacy, implies a “facility with basic probability and numerical concepts.”^10 We need these skills to function in society every day.^11 Early studies in education and adult literacy demonstrated that literacy influences a person’s ability to access information, use print materials, and participate in society.^12 When we apply these skills to a health context—such as reading a nutrition label, getting a flu shot, or managing a health condition—we are using health literacy skills that have developed over time. General literacy gives us some but not all the skills to understand and communicate health information and concerns.^1 Years of school completed can be misleading when estimating literacy and health literacy skills. A person can have completed the required number of years of school and still have limited health literacy. In fact, approximately 45 percent of high school graduates have limited health literacy.^2

Health literacy requires knowledge from many topic areas, including the body, healthy behaviors, and the workings of the health system. Health literacy is influenced by the language we speak; our ability to communicate clearly and listen carefully; and our age, socioeconomic status, cultural background, past experiences, cognitive abilities, and mental health. Each of these factors affects how we communicate, understand, and respond to health information. For example, it can be difficult for anyone, no matter the literacy skills, to remember instructions or read a medication label when feeling sick.

Health information comes from many different sources and is delivered through multiple channels—for example, discussions with friends and family; TV, radio, and newspapers; schools; libraries; Web sites and social media; doctors, dentists, nurses, physician assistants, pharmacists, and other health professionals; health educators; public health officials; nutrition and medicine labels; product pamphlets; and safety warnings. Many of these sources present different and possibly conflicting information, and some present biased or incomplete information. As a result, people confront a complex and potentially overwhelming set of health messages every day.

I n t r o d u c t i o n

To prevent or manage disease and promote health, Americans need to make sense of the health information they hear, read, and see from all of these sources. Consequently, no single group or organization can address health literacy issues on its own. Initiatives from all sectors must be linked and mutually supportive to achieve measurable improvements in health literacy across all socioeconomic levels.

All of us must work together to make sure that health information and services are provided in ways that meet the needs and interests of all people. Although many individual factors contribute to limited health literacy, eliminating barriers and improving the way health care and public health professionals, educators, and the media communicate health information offer the best opportunity to achieve a health literate society.^1

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literacy.^15 Adults with proficient health literacy skills can perform complex and challenging literacy activities—such as integrating, synthesizing, and analyzing multiple pieces of information in a complex document. An example of health material that requires proficient skills is a table of information about health insurance costs based on income and family size. Materials are often written at a reading level too high for most readers,^16 ,^17 ,^18 ,^19 and many health care professionals^20 use only some of the recommended strategies when working with patients with limited health literacy.

Current population data on literacy and health literacy skills in the United States come from the 2003 National Assessment of Adult Literacy (NAAL). NAAL is commissioned by the U.S. Department of Education and measures literacy among adults. National data on adult literacy (which is related to but not the same as health literacy) document significant barriers. According to the 2003 NAAL, the percentage of adults with limited literacy skills has not improved significantly in the past 10 years. For the first time, the 2003 NAAL also studied health literacy. From the more than 19,000 adults surveyed, only 12 percent demonstrated Proficient health literacy.^2 These data identify limited health literacy as a population-level problem of enormous proportion, affecting nearly 9 out of 10 English-speaking adults in the United States. There are no national data on the health literacy skills in native languages of populations in the United States with limited or no English language skills.

The most current summaries of numeracy research paint a dismal portrait.^21 ,^22 A review of research on adult numeracy concluded that research on interventions is insufficient to provide a meaningful direction for practice or additional research.^22 Following its review, the U.S. Department of Education summarized, “research into instructional practices and curriculum content methodologies... is largely flawed, lacking in the scientific rigor necessary to make sound inferences” and found “no consistent definition of math standards.”^22 The U.S. Department of Education recommended a more precise understanding of reasons for dropout from developmental math and more data collection on math outcomes, learner characteristics, and relationships of characteristics and outcomes.

Although limited health literacy affects most adults at some point in their lives, there are disparities in prevalence and severity. Some groups are more likely than others to have limited health literacy. Certain populations are most likely to experience limited health literacy:

■ Adults over the age of 65 years ■ Racial and ethnic groups other than White ■ Recent refugees and immigrants ■ People with less than a high school degree or GED ■ People with incomes at or below the poverty level ■ Non-native speakers of English

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Of great concern are the 14 percent of adults (30 million Americans) who are unable to perform even the simplest everyday literacy tasks, many of whom are not literate in English. Most of the adults with Below Basic health literacy skills would have difficulty reading a chart or simple instructions. These same adults are more likely to report that their health as poor (42 percent) and are more likely to lack health insurance (28 percent) than adults with Proficient health literacy.^2 Additionally, the 54 million adults with any type of disability, difficulty, or illness are especially vulnerable and more likely to perform at the lowest literacy levels.^23 Although physician awareness of the Americans with Disabilities Act has increased since its passage, adults with disabilities continue to face significant barriers to health care in facilities and communication.^24 ,^25

Based on data about students’ literacy skills, limited health literacy is a significant problem for students in grades K–12. Each day, 7,000 students drop out of school—1.2 million each year.^26 The results from the National Assessment of Educational Progress (NAEP) demonstrated “that high school seniors from low-income families read on a par with middle school students from more affluent families.”^27 However, NAEP scores for all students do not bode well for general literacy. Only 30 percent of fourth-grade students and 29 percent of eighth-grade students scored proficient in language arts on the 2005 NAEP.^27 The differences in scores between States ranged from a high of 44-percent proficient students in both fourth and eighth grades in Massachusetts to a low of only 18-percent proficient students in fourth and eighth grades in Mississippi.^27

Health Literacy and Outcomes

The link between limited health literacy and poor health has been well documented. In 2004, both AHRQ and IOM published reports with comprehensive reviews of the literature on health literacy and health outcomes. Both reports concluded that limited health literacy is negatively associated with the use of preventive services (e.g., mammograms or flu shots), management of chronic conditions (e.g., diabetes, high blood pressure, asthma, and HIV/AIDS), and self-reported health. Researchers also found an association between limited health literacy and an increase in preventable hospital visits and admissions.^1 ,^5 Additional studies have linked limited health literacy to misunderstanding instructions about prescription medication, medication errors, poor comprehension of nutrition labels, and mortality.^28 ,^29 ,^30 ,^31 ,^32 ,^33

Limited health literacy has psychological costs. Adults with limited health literacy skills report feeling a sense of shame about their skill level.^34 ,^35 They may hide their struggles with reading or vocabulary.^36 As a result of this and other issues, limited health literacy is often invisible to health care providers and other public health professionals.^37 ,^38 ,^39

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Using a Universal Precautions Approach

The field of health literacy has adopted the idea of “universal precautions” from infectious disease to make the case that clear communication should be the basis for every health information exchange.^65 Because it is impossible to tell by looking who may be infected with HIV or a similar disease transmitted through blood and bodily fluids, doctors, dentists, and other professionals follow a universal precautions approach. This means that they follow the same precautions, such as using gloves and other barriers, for every patient. Similarly, it is impossible to tell by looking who is affected by limited health literacy.^66 For this reason, many health professionals advocate using a universal precautions approach to health communication—that is, assume that most patients will have difficulty understanding health information.^65 When 9 of 10 English-speaking adults have less than proficient health literacy skills, it is an issue that affects everyone. Parker and Kreps note that even though everyone will not be at the same health literacy level, it is always best to use the clearest language possible.^67

Several studies have shown that while interventions and materials that address health literacy barriers may have greater effects on individuals with limited health literacy, many of those at higher health literacy levels also prefer and benefit from them.^61 ,^68 ,^69 By adopting universal precautions, health professionals use clear communication with everyone, regardless of their perceived health literacy skills. At the same time, providers should assess in real-time if the clear communication is working and if not, incorporate additional targeting and tailoring methods to ensure that people receive the information they need to make appropriate health decisions.^67

Targeting and Tailoring Communication

Several studies have demonstrated that using targeted approaches to communication can improve self- management and related health outcomes among patients with limited health literacy. Targeted approaches are adapted to meet the needs of specific groups of people, such as patients with limited literacy skills. Tailored programs and communication, on the other hand, are individually crafted based on the unique characteristics of each person.^70 ,^71 Additionally, interventions targeted for those with limited literacy skills have resulted in strong ratings for acceptability and usefulness of materials^56 and for improved medication dosing and adherence.^50

Making Organizational Changes

As awareness of health literacy has spread, the demand for tools to help organizations meet the communication needs of their patients has grown. Assessing an organization’s strengths and weaknesses is often the first step in improving quality. Two organizational assessments have been developed to measure how well an organization is responding to the health literacy of their patients. One is a self- assessment for hospitals and health centers. This assessment includes an action plan for reducing literacy-related barriers.^72 A second, designed for pharmacies, includes health literacy assessment tools

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for independent auditors, pharmacy staff, and pharmacy customers.^73 Self-audit tools are being developed for health plans and primary care practices to assess their health literacy practices.

Research has also shown the need for the health care system to be more proactive and take responsibility to meet the needs of the people it serves by reducing the health literacy demands placed on individuals. Some of the changes taking place include modifying consent processes,^74 redesigning forms in advance to meet low literacy needs,^69 and emphasizing the importance of health literacy training for health care professionals.^75 ,^76

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■ Limited health literacy is not an individual problem; it is a societywide problem that should be addressed by making sure that health information and services meet the needs of the public.

■ The costs associated with improving health literacy should be weighed against the financial and human costs associated with ignoring limited health literacy.

As a followup to the Surgeon General’s Workshop and in preparation for this National Action Plan to Improve Health Literacy, in 2007 and 2008, HHS convened town hall meetings across the country to explore promising practices to improve health literacy. Representatives from local organizations serving the health, education, social services, and information needs of the community were invited. To include geographically and culturally diverse perspectives, these 1-day meetings were held in New York City, Sacramento, St. Louis, and Tampa. The summaries to each townhall meeting can be accessed online at http://www.health.gov/communication/literacy/TownHall/. The morning session of each meeting focused on presentations and discussions about promising health literacy practices in the region. Each meeting had a slightly different theme. For example, the meeting in New York City focused on adult education, and the meeting in Sacramento focused on coordinated efforts by State and local governments.

During the afternoon session, participants in the town hall meetings were randomly assigned to one of four small groups and asked to develop goals for achieving a more health literate society. Imagining that it was the year 2025, participants described the characteristics of a health literate society. Based on those characteristics, each group prioritized goals and suggested strategies to achieve them.

Several themes emerged from the public meetings, including the need for cross-disciplinary and community partnerships to improve health literacy. The themes identified in the first meeting in New York City appeared at all the town halls, with varying levels of emphasis. The themes can be summarized as a STEPP approach to health literacy improvement:

■ S haring—We must share, among ourselves and across disciplinary and organizational boundaries, information, findings, program successes, and areas for improvement.

■ T echnology—Being mindful of the digital divide, we must consider technology as an essential tool for improving health literacy. ■ E valuation—More programs need all types of evaluation, especially evaluation that accounts for what is important to different population groups. ■ P artnership—We must create partnerships with communities and each other.

■ P articipation—Health literacy has its roots in community engagement. We must partner with the people whom we are trying to help.

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The goals and strategies proposed in the following section build on the growing evidence base articulated in HHS’ Healthy People 2010 Health Communication Action Plan^9 and IOM’s health literacy report.^1 These goals and strategies reflect the ideas and approaches outlined in the Surgeon General’s Workshop and emphasized in presentations, public dialogue, and themes during the town hall meetings. Research since the 2006 workshop has also been used to identify promising strategies. The goals and strategies also reflect the reviews and comments of many health-related organizations already working in the field of health literacy or beginning to connect health literacy to their work in other areas, such as health disparities and healthy equity.