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Health Literacy: Challenges and Strategies

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Nichole Egbert, PhD
Kevin M. Nanna, MSN, RN, BC-NE

Abstract

Although health literacy is a concept new to many members of the healthcare community, it has quickly caught the attention of researchers, policy makers, and clinicians due to its widespread impact on health and well-being. Despite the enormous implications of low health literacy, there remains a significant amount of confusion surrounding the concept and its connection with healthcare outcomes. The purpose of this article is to outline the scope of low health literacy as a concept and explore ways that researchers and clinicians can reduce its negative impact on health outcomes. First, the major definitions of health literacy are presented in a brief overview. Then, the concepts of obtaining, processing/understanding, and using information serve as a working framework for discussing both the challenges of low health literacy and strategies to address low health literacy. The authors conclude by identifying areas of research that are needed to advance the conceptualization of health literacy.

Citation: Egbert, N., Nanna, K., (Sept. 30, 2009) "Health Literacy: Challenges and Strategies" OJIN: The Online Journal of Issues in NursingVol. 14, No. 3, Manuscript 1.

DOI: 10.3912/OJIN.Vol14No03Man01

Keywords: health literacy, decision-making, health information, Internet navigation, patient empowerment, patient-provider relationship

Although health literacy is a concept new to many members of the healthcare community, it has quickly caught the attention of researchers, policy makers, and clinicians due to its widespread impact on health and well-being. Health literacy is believed to be a stronger predictor of health outcomes than social and economic status, education, gender, and age (American Medical Association, 1999). Only 12 percent of Americans have an adequate level of health literacy, resulting in an additional $73 billion annually in healthcare expenditures (National Academy on an Aging Society, 1999; White, 2008). Persons with inadequate health literacy have poorer health regardless of the illness in question (DeWalt, Berkman, Sheridan, Lohr, & Pignone, 2004). Health literacy is a dynamic process that involves both the patient and the provider (Paasche-Orlow & Wolf, 2007). Inadequate health literacy is more prevalent among vulnerable populations, such as the elderly, minorities, persons with lower education, and persons with chronic disease (DeWalt et al.). The ramifications for people with low to moderate healthcare literacy skills include the inability to assume positive self management, higher medical costs due to more medication and treatment errors, more frequent hospitalizations, longer hospital stays, more visits to their healthcare provider, and a lack of necessary skills to obtain needed services (National Academy on an Aging Society).

Despite the enormous implications of low health literacy, there remains a significant amount of confusion surrounding the concept and its implications for healthcare professionals. The purpose of this article is to outline the scope of low health literacy as a concept and explore ways that researchers and clinicians can reduce its negative impact on health outcomes. First, the major definitions of health literacy are presented in a brief overview. Then, the concepts of obtaining, processing/understanding, and using information serve as a working framework for discussing both the challenges of low health literacy and strategies to address low health literacy. The authors conclude by identifying areas of research that are needed to advance the conceptualization of health literacy.

Definitions of Health Literacy

The term health literacy was introduced in 1974 in a paper calling for minimum health education standards for all grade-school levels in the United States (US) (National Library of Medicine, 2000). However, widespread attention to the concept did not emerge until the publication of the 1992 National Assessment of Adult Literacy (NAAL). Despite the increase in attention to this concept, a consensus amongst researchers as to a definition of the term has yet to be reached; many definitions of health literacy have been developed, each providing a slightly different perspective.

Some of the most widely accepted definitions of health literacy have been developed by the World Health Organization (WHO), the American Medical Association (AMA), and the Institute of Medicine (IOM). The WHO has defined health literacy as “the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand, and use information in ways that promote and maintain good health” (WHO, 1998, p. 10). The AMA has offered the following definition of health literacy: “a constellation of skills, including the ability to perform basic reading and numerical tasks required to function in the health care environment” (American Medical Association Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, 1999, p. 553). Finally, the IOM has defined 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” (Nielsen-Bohlman, Panzer, & Kindig, 2004, p. 32).

As the latter definition has received the most support, being adopted by Healthy People 2010 and a number of organizations, it provides the framework for this discussion. This overview article is organized according to the definition’s focus on the ability to obtain health information, process/understand health information, and use health information for decision making. These three factors should not be considered to be mutually exclusive to one another, but rather to provide a working framework through which the concept of health literacy can be discussed.

Obtaining Information

One of the most difficult challenges healthcare providers may need to overcome when speaking with persons having low health literacy is gaining their trust. It stands to reason that the most obvious approach to addressing low health literacy is related to making information more accessible. Without accessible information, there is no basis by which an individual, organization, or community can process messages to improve health outcomes. Because information accessibility is closely related to communication channels, i.e., the methods by which people receive messages, this section will overview how people obtain information through healthcare providers, print sources, and the Internet. Both obstacles and strategies for obtaining information through these channels will be presented.

Challenges Related to Obtaining Information

Historically, people have gone to their healthcare providers to receive credible health information. Although health information is now widely available via the Internet, individuals who are less educated, have less money, and are minorities are more likely to have inadequate health literacy (Paasche-Orlow & Wolf, 2007) because these individuals often do not have regular access to the Internet. They continue to receive most of their health information from healthcare providers. Speaking with a knowledgeable healthcare provider offers (among other advantages) the opportunity for interactivity between patients and healthcare professionals; yet this method of information delivery poses many challenges related to health literacy (Schillinger, Bindman, Wang, Stewart, & Piette, 2004). One of the most difficult challenges healthcare providers may need to overcome when speaking with persons having low health literacy is gaining their trust. When the provider is different from the patient in terms of age, ethnic background, education, and socio-economic status, it may be difficult for the patient to feel comfortable asking questions or disclosing personal health information. In fact, many patients work hard to hide the fact that they have trouble understanding something they are told or given to read because they are embarrassed and/or do not want to appear to challenge the healthcare provider in any way (Barrett & Sheen Puryear, 2006). To make matters worse, many persons low in health literacy often do not see the same provider each time they seek care, making it even more challenging for providers to develop and maintain good relationships. Additionally, time is often in short supply during medical interviews and examinations, as pressures continue to mount for healthcare providers to increase the number of patients they see each day. When time is limited, and patients do not feel comfortable communicating, it can be very difficult for a healthcare provider to determine what the patient does not understand and to address this knowledge gap adequately.

...many persons low in health literacy often do not see the same provider each time they seek care, making it even more challenging for providers to develop and maintain good relationships. In an effort to bridge the gap of understanding, many healthcare providers will offer patients printed health information in the form of brochures, articles, and/or books. Some insurance companies, clinics, and other health organizations will mail text-based information to their publics or provide on-site “libraries” of health information. Unfortunately, these efforts at promoting health information are inconsistent and highly dependent upon level of public funding and geographic location, with the poorer and more rural populations at a greater disadvantage. Individuals who cannot regularly visit healthcare organizations may not have access to these materials, and those who do have access may not understand how to navigate a library or even a health reference text if it is too complex or scientific.

There are also challenges related to obtaining information via the Internet. As mentioned above, patients with access to the Internet are more likely to be White, have higher income levels and more education, be under 65 years of age, and have higher health literacy (Bodie & Dutta, 2008). In contrast, marginalized populations, such as ethnic groups that speak English as a second language, the poor, and the elderly have less access to online health information. Even when patients do have access to the Internet, because there is no regulatory agent guarding the quality of health information on the Internet, the information is often inaccurate and out-of-date (Smith & Malone, 2008; Walji et al., 2004). These issues, which are vital to promoting health literacy online, have been highlighted by the U.S. Department of Health and Human Services (2000) in Healthy People 2010 in their goals for improving health communication.

Finally, the content of Internet information and the structure of this information are two additional obstacles for Internet users with low health literacy. Health information websites are notorious for using overly complex and scientific language that makes the content difficult to understand and use (Zarcadoolas, Pleasant, & Greer, 2006). Website navigation is another common challenge in obtaining online information. Although language use is discussed more in the next section, it is mentioned here because it can also interfere with the user’s ability to navigate the website and find the most pertinent pieces of information. Using a website correctly requires computer literacy skills, such as understanding how links, graphics, and interactive features, e.g. chat and search boxes, work. Although these barriers are formidable, they are not insurmountable; interventions using this technology with persons having low health literacy skills have been shown to be successful (Eichner & Dullabh, 2007).

Strategies Related to Obtaining Information

Some of the challenges related to improving communication with patients having low health literacy involve allowing nurses and other healthcare providers more time to interact with patients. In addition, just raising awareness of the issues by incorporating health literacy content into the nursing and medical school programs and continuing education offerings is a step in the right direction (Barrett & Sheen Puryear, 2006; Williams, Davis, Parker, & Weiss, 2002). A toolkit for those wishing to conduct training on the topic of health literacy is available online from the American Library Association (2008). Other helpful materials include the video "Low Health Literacy: You Can't Tell by Looking"  (AMA, 2001) and the AMA Health Literacy Manual (Weiss, 2007) for healthcare providers. These resources offer providers ways to introduce the health literacy concept to their institutions and colleagues through ready-to-use educational materials, such as videos, worksheets, and case studies for discussion.

With regard to producing Internet content, there are several strategies for increasing the accessibility of health information to populations with low health literacy. Although lack of computer availability can be an obstacle, patients may be able to use computers with Internet connectivity in public facilities, such as libraries, hospitals, schools, and senior centers. For those individuals with low health literacy who choose the Internet for health information, the guidelines suggested below help to make online information more accessible:

  • Make Web pages simple, with the number of links, graphics, and text items minimized as much as possible. When links and graphics are used, they should be labeled with clear instructions (Zarcadoolas, Blanco, Boyer, & Pleasant, 2002).
  • Choose HTML over nonstandard formats such as PDF and Flash that require more advanced computer skills and additional software to open (Eichner & Dullabh, 2007).
  • Avoid requiring the user to scroll or click too many times to get to the information (Zarcadoolas et al., 2002).
  • Provide a table of contents and links back to the main page (Zarcadoolas et al.).

Processing and Understanding Information

Once a health message has been delivered successfully to its intended recipient, either through a human channel, a print source, or the Internet, there is still a risk that it is not being processed or understood as intended. This situation may be especially prevalent in clinical settings where patients may feel pressure to “agree” that they understand, even when they do not. It is important for healthcare providers to identify patients who are at high risk of not being able to process and understand the health information they are provided. This section reviews some of the major challenges and strategies related to processing information once it has been obtained, and strategies for overcoming these challenges.

Challenges Related to Processing and Understanding Information

...the people who need the healthcare system the most are least likely to be successful in using it to gain needed information and use the information in a productive manner... In general terms, much of processing and understanding information is related to a person’s level of basic literacy. The National Literacy Act of 1991 defined literacy as “an individual’s ability to read, write, and speak in English and compute and solve problems at levels of proficiency necessary to function on the job and in society, to achieve one’s goals, and to develop one’s knowledge and potential (National Institute for Literacy, 1991, section 3).” These components are the foundational skills needed to interact successfully within the healthcare system. Given this 1991 definition, the 1992 National Assessment of Adult Literacy (NAAL) survey findings revealing that 90 million persons in America do not possess adequate literacy skills (Kirsch, Jungeblut, Jenkins, & Kolstad, 1993) were especially alarming to healthcare researchers, policy makers, and clinicians.  

The implications of these findings are that health literacy is not an issue only for clinicians serving urban or poor populations, but that low health literacy is a widespread problem in many communities. For example, the elderly are more likely to have low health literacy skills compared to their younger counterparts due to a decline in their reading and cognitive abilities (Baker, Gazmararian, Sudano, & Patterson, 2000). In addition, people are more likely to develop a chronic illness as they age. Thus, the people who need the healthcare system the most are least likely to be successful in using it to gain needed information and use the information in a productive manner. To assess the situation more comprehensively, in 2002 the NAAL added questions to their survey specific to health literacy. Responses to these questions reinforced the concern that many Americans do not have the skills necessary to meet the expectations of the healthcare system (National Assessment of Adult Literacy, n.d.).

The Newest Vital Sign (NVS) is a recent measure of health literacy available in English and Spanish and intended for clinical use. Several diagnostic tools have been developed to identify patients most at risk for having inadequate health literacy. The Test of Functional Health Literacy in Adults (TOFHLA) and Rapid Estimate of Adult Literacy in Medicine (REALM) are widely used measures of health literacy and have been translated into multiple languages (DeWalt, et al., 2004). The TOFHLA measures a patient’s ability to read and understand commonly used medical skills within a maximum time of 22 minutes (12 minutes for the short version of the TOFHLA) (Baker, Williams, Parker, Gazmararian, & Nurss, 1999). The REALM is a word recognition test that is completed with a clinician in less than three minutes (Baker et al.). In the REALM test, the patient reads aloud a list of medical words presented in the order of increasing difficulty. The clinician then totals  all of the words that the patient pronounced correctly to obtain a final score which is then computed into a grade level. Critics of these measures have identified the need to develop a more complete and practical measure of health literacy (Paasche-Orlow & Wolf, 2007; Pleasant, 2008). In response to these critics, new measures of health literacy have been developed. The Newest Vital Sign (NVS) is a recent measure of health literacy available in English and Spanish and intended for clinical use (Weiss, et al., 2005). It serves as a quick, accurate screening test for limited literacy in primary care settings. The NVS consists of a nutrition label accompanied by six questions; it requires three minutes for administration. Patients with more than four correct responses are unlikely to have low literacy, whereas fewer than four correct answers indicate the possibility of limited literacy.

Instead of looking for new ways to “test” patients’ health literacy, a more practical and effective approach may be to produce more accessible and easier-to-understand materials for all patients (Wilson-Stronks, Lee, Cordero, Kopp, & Galvez, 2008). A majority of available health information is written at a 12th grade reading level. This exceeds the eighth grade reading level of the average American (Wilson, 2003). Therefore, a patient’s score of health literacy using the TOFHLA or REALM is incomplete without an assessment of the information being delivered by the healthcare organization. Any healthcare organization can easily assess the reading level of their printed materials by using Microsoft Word’s Flesh-Kincaid method to assess for reading level. These reading statistics can be viewed by clicking on the “Grammar & Spelling” function in Microsoft Word. Examples of easier-to-understand materials could include videos, picture-based messages, or text-based material that is written at a lower reading level. Therefore, measures of health literacy would be better suited for research purposes, whereas more patient-centered strategies should be implemented in the clinical setting.

Identifying patients who may be low in health literacy is not always easy in a clinical setting. For one thing, many patients may be in denial as to their limitations regarding reading and understanding health information. Other patients may acknowledge their limitations, but try very hard to hide them so as to avoid embarrassment (Vezeau, 2008). For example, patients with low health literacy may avoid asking questions when medical information is not clear to them (Nielsen-Bohlman et al., 2004). Nurses, through their holistic practice and intimacy with patients, are uniquely positioned to assess these signs of inadequate health literacy (National Patient Safety Foundation, 2003). As the nurse-patient relationship evolves over time, the patient may feel more comfortable disclosing health literacy deficiencies or be willing to seek clarification when health information provided by the clinician is not understood (National Patient Safety Foundation, 2003). In the short run, nurses and other healthcare providers can learn to pay attention to signs that may indicate a patient has inadequate health literacy skills or is completely illiterate, such as the signs listed below that have been identified by the National Patient Safety Foundation (National Patient Safety Foundation, 2003):

  • Forms that are incompletely or incorrectly filled out
  • Patients who do not read any printed material during the patient-healthcare provider interaction
  • Statements, such as “I will read this at home,” or “I can’t read this now; I forgot my glasses.”
  • Patients who are unable to assume the self-management role successfully

A complicating factor in identifying patients who may have difficulty understanding health information is the differences among racial/ethnic groups with regard to level of health literacy skills (Kutner, Greenburg, Jin, & Paulsen, 2006). Hispanics were found to be the group with the highest percentage of their population below basic literacy levels (41%) as compared to Whites with the lowest percentage at 9% (Kutner, et al.). Whites also were found to have the highest percentage at the proficient level (14%) compared to Blacks with the lowest percentage (2%) at this level (Kutner, et al.). The health literacy problem and its consequences are compounded for the 18% of Americans who do not speak English as their primary language at home (Language Use and English Speaking Ability: 2000, 2003). Not only do these individuals often lack access to health information, but when the information is obtained, they also struggle to process and understand it.

Strategies Related to Processing and Understanding Information

...information should be presented in the order it is needed so the reader is able to understand subsequent information. One of the most common strategies leveraged against the problem of low health literacy is the “plain language agenda.” Using plain language does not refer only to reducing the reading level of a text, but also to improving the tone and organization of the information (Nagel et al., 2008). Put simply, using plain language means replacing medical or technical terms with words that people use every day in their conversations with one another. Plain language presents information in a user-friendly manner by organizing ideas into units headed by appropriate titles and by surrounding each idea with plenty of white space. Also, when structuring written text in plain language, information should be presented in the order it is needed so the reader is able to understand subsequent information. More guidelines for creating materials according to plain language guidelines can be found at the following Web sites:

In addition, the following plain language thesaurus is available:

What complicates the plain language agenda, however, is the fact that what is plain language to one cultural group may not be clear to another. Hence, developing communication strategies that are culturally sensitive is another important consideration when sharing health information. It is important to recognize the difference in meaning that words may have between different ethnic- and age-based cultures.

When talking directly with a patient, use of the teach-back method, in which patients repeat back to the provider the information they believe they have just heard, can be an effective strategy. Teach-back strategies allow the healthcare provider to understand what the patient heard and enable the patient to rephrase the information into his or her own language. However, one should be careful when using the teach-back method so as not to allow the experience to become intimidating or “test like” in nature for the patient. Instead, the teach-back method should be used to create constructive dialogue between the patient and the healthcare provider to ensure that the intended message was properly received.

Interacting with the healthcare system can be a very stressful, especially when coupled with the fear of an unknown diagnosis or the fear associated with receiving instructions for self-care behaviors. Nurses and other healthcare providers can help their patients find resources, such as local support groups, health education classes, community services, health web sites, blogs, and listservs that will reinforce the information provided and further empower patients to take control of their health. Sometimes the help needed may be very close to home, as when patients bring a family member or friend to healthcare encounters to provide an extra set of ears and to either reinforce the information provided by the healthcare provider or to seek clarification when needed. For some non-English speaking patients, translators can be provided by the healthcare organization to assist with communication between the patient and healthcare provider. There are also certified patient navigators and patient advocate companies for patients who need assistance in understanding a healthcare professional. However, the extent and quality of services provided by these companies vary and they are not yet available in every state.

Using Information

The vast majority of attention in health literacy research has been focused on information accessibility, namely the delivery and readability of health-related information. Accessible information that one understands is a necessary but not sufficient condition for addressing health literacy. One’s ability to use the information in making healthcare decisions based on the information accessed is also an important part of health literacy.

Challenges Related to Using Information

Even if one assumes that information is written at a reading level that can be understood by its readers, translated into a culturally appropriate vernacular, and delivered via a communication channel that is accepted and easily accessed, there is still no guarantee that the information will be utilized as it was intended. At best, having accurate information will lead to a basic understanding of what the message sender desires the recipient both to know and to do, which is what  Nutbeam (2000) characterized as functional health literacy. Functional health literacy is a vital first step to realizing improvements in many health-related outcomes. Failing to move beyond the basic communication issues discussed above can be likened to a healthcare system that is only concerned with emergency medicine, rather than addressing problems at their source. Nutbeam (2000) has gone on to describe a second level of health literacy, namely, interactive health literacy. This level refers to the personal capacity to build skills and “act independently” (p. 266) when armed with factual information. Finally, critical health literacy is the empowerment of an individual to be his or her own health advocate despite difficult economical or social situations, even to the point of working to establish changes in those circumstances through community action.

In the clinical setting The Joint Commission (TJC) has also begun to consider how patient empowerment through health literacy efforts may be increased (TJC, 2007). Among the suggestions made by the TJC roundtable is system-wide change that fosters provider-patient relationships through open, honest communication. However, achieving this type of communication is hampered by the current business model of clinical medicine that forces healthcare providers to maximize the number of patients they see each day. The need to address this concern is noted in research findings indicating a relationship between patients with low health literacy and decreased levels of satisfaction with their primary care (Shea et al., 2007). Thus, those patients most at risk for not understanding what their healthcare providers are telling them are also more likely to be dissatisfied with their care, resulting in a further breakdown of trust and continuity in the patient-provider relationship.

Strategies to Increase Information Use

...increasing a population’s health literacy across multiple health contexts will result in that population being empowered to take more control when addressing future health-related challenges. Addressing the interactive and critical health literacy needs of a population presents an increasingly complex set of issues for health providers and researchers. Similar to health promotion efforts, the scope of the problem becomes exponentially large when one considers the need to equip and empower people to be their own educated, capable health advocates. Some researchers have begun to consider how such large-scale efforts could be conceptualized. For example, Ratzan (2001) suggested a four-pronged approach, including integrated marketing communication (drawing upon public relations and social marketing experts), health education (using the Internet and other multi-media channels), shared decision making (building partnerships with key groups), and efforts to increase the social capital of disenfranchised groups (providing social and relationship resources that are more scarce for underprivileged people). Kickbusch (2001) has suggested that by considering health literacy broadly (as opposed to isolating diseases or specific health risks), and working to increase a population’s social capital, healthcare advocates can achieve a more integrated and sustained program of health and social change. Simply put, increasing a population’s health literacy across multiple health contexts will result in that population being empowered to take more control when addressing future health-related challenges.

Implications for Training, Research, and Practice

There are many fruitful areas of research in health literacy. One good starting point includes the development of a definition that engenders all aspects of health literacy. A clear definition will lead to conceptual clarity of this ambiguous concept. Subsequently, new measures need to be developed that provide conceptual-empirical consistency. Third, there are many areas of health literacy that remain unexplored. Much of the research has focused on patient characteristics; future research is needed to investigate the relationship between patient/provider characteristics and health literacy. Insights from this research can guide providers, healthcare organizations, and the community in achieving a health-literate society. Research is also needed to identify the cultural and age-related issues that intersect with health literacy. These areas of research will give healthcare providers the tools necessary to deliver more appropriate care that is tailored towards an individual patient’s needs.

Future Directions

Drawing upon the initial health literacy research and involving the community in programs and projects may be the best formula for success in improving health literacy. Today’s researchers and healthcare providers can benefit from the current proliferation of health literacy research. Although much has been done to clarify the challenges associated with the various populations that are coping with a multitude of health issues, a disconnect remains between these research findings and best practice in most health delivery organizations. This means that organizations need to embrace a health literacy agenda, such as the one articulated by the Agency for Health Research and Quality (2004). Once these values and practices are prioritized, policies and procedures can be implemented. Clinicians are encouraged to develop interdisciplinary teams that include communication experts, marketing professionals, visual designers, health information technology experts, and librarians to deliver oral, visual, print, and Internet-based information. Developing these materials will require teams to consider the specific needs of the population they serve. This practice will result in tailored health information that will best serve each population. Drawing upon the initial health literacy research and involving the community in programs and projects may be the best formula for success in improving health literacy.

Authors

Nichole Egbert, PhD
E-mail: negbert@kent.edu

Nichole Egbert is an Associate Professor in the School of Communication Studies at Kent State University. Her research interests include health literacy, communication and aging, social support, and religiosity/spirituality in health contexts. Her work can be found in such journals as Health Communication, Journal of Health Communication, Communication Quarterly, Journal of American College Health, and Journal of Communication and Religion.

Kevin M. Nanna, MSN, RN, BC-NE
E-mail: knanna@kent.edu

Kevin M. Nanna is a doctoral student in the College of Nursing at Kent State University. He holds a Master of Science in Nursing and Healthcare Management and is a board certified nurse executive through the American Nurses Credentialing Center. His clinical and management experience have motivated him to further understand how to empower patients in managing their chronic illness. His research interests include health literacy, patient navigation, patient-provider relationships, and self management.

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© 2009 OJIN: The Online Journal of Issues in Nursing
Article published September 30, 2009


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