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Health Literacy and Health/Risk Communication

Summary and Keywords

Health literacy—defined as the ability of an individual to obtain, process, understand, and communicate about health information—contributes significantly to health outcomes and costs to the U.S. health-care system. Approximately one-quarter to one-half of U.S. adults struggle with health information, which includes understanding patient education materials, reading medication labels, and communicating with health-care providers. Low health literacy is more common among the elderly, those who speak English as a second language, and those of lower socioeconomic status. In addition to conceptualizing health literacy as an individual-level skill, it can also be considered an organizational or community-level ability.

Increased attention to the field of health literacy has resulted in debates about the definition and the best ways to assess health literacy; there is also a strong and growing movement within the field of health literacy research and practice to frame health literacy less as a deficit to overcome and more as an approach to empowering patients and improving outcomes. As health-care providers have recognized the importance of health literacy, workshops, and training programs have been developed and evaluated to improve the care of low-health-literate patients. Similarly, health promotion professionals have developed best practices for reaching low-health-literate audiences with traditional and new digital media, which can also increase access for patients with hearing or visual impairments. Additionally, recent policy changes in the United States, including those related to the Affordable Care Act, contribute to a greater focus and regulation of factors that impact health literacy. Researchers and practitioners together are advancing understanding of health literacy, its relationship to health outcomes and health-care costs, and improved strategies for improving the health of lower health literate patients. Development and review of health literacy pieces can aid in shared decision making and provide insights for patients on various health-care services.

Keywords: health literacy, health outcomes, health communication, healthcare systems, shared decision making

Introduction

Health literacy—the degree to which individuals can obtain, process, understand, and communicate about health-related information needed to make informed health decisions (Berkman, Davis, & McCormack, 2010)—is a driver of both individual health outcomes and broad health-care system costs. Although there are many different ways to define health literacy, this particular definition was proposed by Berkman et al. (2010) in a review and synthesis of the numerous definitions of health literacy. It is important for the success and clarity of any health literacy project to be clear on the definition selected and the rationale behind that choice. The Berkman et al. (2010) definition was adopted to guide this entry given the rigor of the review that led to its creation and its utility for thinking about health literacy—both as a factor to be considered when designing interventions and as an approach for empowering patients.

The personal and public health implications related to health literacy, coupled with the high prevalence of this important health issue have brought increased attention to health literacy from both scholars and health-care practitioners. This entry provides background information on health literacy, including the demographics of health literacy and a description of the link between health literacy and health outcomes. This is followed by an overview of relevant conceptual models of health literacy, a description of measurement tools to assess health literacy, guidelines on how to communicate more effectively with low-health-literate patients for health-care providers and with print materials, strategies for improving health literacy, and a discussion of current issues facing the field.

Background

Prevalence of Low Health Literacy around the World

Low health literacy is a prevalent and impactful health concern. In the United States, an estimated one-quarter to one-half of adults are thought to struggle with finding, understanding, using, and communicating about health information (Kutner, Greenberg, Jin, & Paulsen, 2006; Nielsen-Bohlman, Panzer, & Kindig, 2004; Paasche-Orlow, Parker, Gazmararian, Nielsen-Bohlman, & Rudd, 2005; Williams et al., 1995). However, this prevalence is not distributed evenly across American adults—there are several demographic indicators that are thought to predict a greater likelihood of having low health literacy. These often include racial/ethnic minority status, being over the age of 65, and not completing high school (Kutner et al., 2006; Nielsen-Bohlman et al., 2004; Paasche-Orlow et al., 2005; Paasche-Orlow & Wolf, 2007).

It should be noted that there have been only a limited number of studies that address health literacy at a population level in the United States. This could be a result of most measures of health literacy requiring face-to-face administration, given the limited literacy abilities assumed when assessing this concept. This limitation severely restricts our ability to understand the impact that demographic traits have on this concept and more research that aims to better understand this relationship is needed. A brief review of the existing population-based studies from the United States follows.

The National Adult Literacy Survey (NALS), initially conducted in 1992, was the first study to note the low prevalence of general literacy levels in the United States. These findings brought to light the idea that many patients could be struggling with understanding health information (Ad Hoc Committee on Health Literacy, 1999). Soon after, Williams and colleagues (1995) designed and implemented a measure of health literacy (the Test of Functional Health Literacy in Adults, TOFHLA, described in a later section) in a survey administered in two hospitals located in urban settings. Through these procedures, Williams and colleagues (1995) determined that nearly 60% of their large patient sample (N=2,659) had difficulty comprehending informed consent and more than 40% could not follow specific medication instructions. In this study, there was a considerable difference in the prevalence of low health literacy among those who spoke English (35.1% with low health literacy) and those who spoke Spanish (61.7% with low health literacy). As such, evidence began to grow in support of “health literacy” and the important implications this concept had for health outcomes, especially across demographic characteristics.

Similar to the NALS, the International Adult Literacy Survey (IALS) was administered in the late 1990s to countries throughout the world in an effort to better understand general literacy in different geographic areas (Kirsch, 2001); several reading tasks were included in this initiative, some of which focused on health topics including preventive measures (e.g., accident prevention), substance misuse, and how to stay healthy in general. Results from the IALS found that literacy performance among U.S. adults was similar to that in other countries including Canada, Belgium, Australia, the United Kingdom, Ireland, and Germany, where about 20% of adults surveyed exhibited the lowest level on prose, document, and quantitative literacy scales (Binkley, Matherson, & Williams, 1997); in contrast, Sweden, New Zealand, and the Netherlands had higher rates of literacy than in the United States, while Poland and the German-speaking area of Switzerland exhibited lower rates of literacy in these areas than did American adults.

More than five years later, the National Center for Education Statistics conducted the National Assessment of Adult Literacy (NAAL). This survey is considered “the nation’s most comprehensive measure of adult literacy since the 1992 National Adult Literacy Survey” and included almost 20,000 participants (National Center for Education Statistics, n.d.). Although the specific goal of the NAAL was to determine general prevalence rates for American adults, direct attention to health literacy was also included. Health-oriented tasks such as reading health labels and pamphlets, as well as calculating dosage amounts, were included in NAAL. Overall, 36% of this generalizable sample had basic or below basic health literacy. Findings from this assessment depicted the sizeable differences in health literacy across demographic groups. This large study found that 41% of Hispanic adults in the United States had below basic health literacy, in comparison to only 9% of white adults, 24% of black adults, 25% of American Indian and Alaskan Native adults, 13% of Asian adults, and 9% of multiracial adults (Kutner et al., 2006). Similar findings from the NAAL suggest that adults who spoke Spanish only before starting school generally had below basic health literacy scores (Kutner et al., 2006), thus supporting this similar finding from Williams et al. (1995).

Given the impactful findings from the previous efforts, Rudd, Kirsch, and Yamamoto (2004) integrated findings and tasks from both surveys to generate the Health Activities Literacy Scale (HALS), which was then “linked back to the NALS database” (p. 1) to determine how participants performed on each of the tasks outlined by HALS. The HALS scale was designed on a 500-point scale and reflected five levels of health literacy. Although this is a newly developed scale, Rudd and colleagues found that nearly 20% of American adults scored in the level-one category of the HALS scale or lower. Again, among those participants in the lowest level of health literacy, more than 40% reported being born in a Spanish-speaking country.

Despite recognizing the importance of health literacy in Europe and countries outside the United States, there is a comparative lack of research of health literacy to determine prevalence across countries using population-based studies (Barry, D’Eath, & Sixsmith, 2013). World Health Organization (2013) offers a collection of findings related to this concept from around the world entitled, “Health Literacy: The Solid Facts.” Included in this publication are outcomes from the European Health Literacy Survey, which employs the European Health Measurement Instrument to capture health literacy, and includes large (N=1,000) sample sizes across Ireland, the Netherlands, Greece, Germany, Bulgaria, Austria, Poland, and Spain. Findings from this survey suggest that almost 50% of Europeans may also struggle with health information.

A limited number of examples suggest that 20% of 2,000 U.K. adults had difficulty understanding basic health information (Sihota & Lennard, 2004), and 41% of Australian adults had inadequate health literacy (Australian Bureau of Statistics, 2009). The fact that many health literacy instruments are developed in English first may cause some lag as these instruments are translated and validated for use in other languages and countries.

Demographic Impact on Health Literacy

The relationship between race/ethnicity and health literacy has been supported through additional U.S. research efforts. One extensive example comes from a systematic analysis in which statistics were compiled for this relationship across a number of studies. As a result, it was concluded that participants who completed health literacy surveys in Spanish often had lower health literacy than those who completed studies in English. However, health literacy studies included in this analysis often explicitly excluded participants who could not read or speak English fluently (Paasche-Orlow et al., 2005). Other studies have focused on the influence of language in health literacy tests. One study conducted in Canada showed that inadequate health literacy was prevalent in older adults (Todd & Hoffman-Goetz, 2011). The Chinese immigrants in this study had higher scores of health literacy regarding colon cancer information when they were asked in Chinese than English, but the difference was relatively minor and suggests language may not be as large a factor when measuring health literacy.

In contrast, additional research designed to create a new measure of health literacy based solely on imputed demographic variables (the Demographic Assessment for Health Literacy or DAHL) found black adults to have lower health literacy than Hispanic adults. Using the DAHL scale, black adults exhibited a 16-point lower health literacy score than did white adults of the same age and number of years of schooling, whereas Hispanic adults in this study scored 6.7 points lower than their white counterparts on the DAHL scale, which ranges from 19 to 93 (Hanchate, Ash, Gazmararian, Wolf, & Paasche-Orlow, 2008; Institute of Medicine (IOM), 2009). Despite the inconsistency in research that attempts to conclude the racial/ethnic demographics that may put an individual at greatest risk for having low health literacy, it is clear that racial/ethnic minorities tend to have lower health literacy than white adults. Nielsen-Bohlman and colleagues (2004), in their Institute of Medicine report on health literacy, note there are more white adults with low health literacy by quantity in the United States than there are low-health-literate adults of other racial/ethnic backgrounds. As such, interventions dedicated to improving health literacy may be advised to target rates across all racial/ethnic demographic groups.

In addition to racial/ethnic differences in health literacy, adults over the age of 65 exhibit notably lower health literacy skills than adults who are younger. Based on the NAAL findings, almost one-third of adults over the age of 65 have below basic health literacy skills. This is a marked change from adults aged 50 to 64 years, where only 13% showed difficulty with finding, understanding, using, and communicating about health information. Health literacy may continue to decrease after the age of 65, where imputed demographic information estimated that adults aged 85 years and older could have a 28-point lower health literacy score (indicated by the DAHL) than adults who are only 65 years old (Hanchate et al., 2008). Indeed, one study conducted with adults aged 65 years and older found that when controlling for other impactful variables, a one-year increase in age corresponded with a 1.3-point decrease in health literacy when this concept was measured with the Short Test of Functional Health Literacy in Adults (S-TOFHLA). This negative relationship persisted (a one-year increase yielded a 0.9 point decrease in S-TOFHLA score) even after taking into account adult cognitive dysfunction (Baker, Gazmararian, Sudano, & Patterson, 2000).

Finally, education is a well-documented social determinant of health (Marmot, Friel, Bell, Houweling, & Taylor, 2008), sharing a number of inverse relationships with beneficial outcomes, including those related to health. Similarly, limited education tends to be associated with having low health literacy. Among adults who did not complete high school, nearly half of these individuals are thought to have below basic health literacy skills. Findings from the NAAL also suggest that an increase in education even after acquiring a high school diploma may be associated with a decreased likelihood of having low health literacy (Kutner et al., 2006). The European Health Literacy Survey (HLS-EU) used Dutch data to show that socio-demographic information (e.g., low level of education, a lower perceived social status, and male) influences low health literacy (van der Heide et al., 2013a). Findings from the Adult Literacy and Life Skills Survey (ALL) in the Netherlands also indicated that education is associated with health literacy (van der Heide et al., 2013b). A nationally representative survey at the EU level found that economic status, education, and age are associated with health literacy (Sørensen et al., 2015). In the causal pathway model created by Paasche-Orlow and Wolf (described in greater detail in the next section), race/ethnicity, age, and education are the three demographic characteristics thought to predict an individual’s health literacy capacity (Paasche-Orlow & Wolf, 2007).

Additional research suggests that income and geographic location in the United States may also be related to low health literacy (Nielsen-Bohlman et al., 2004), where adults who have an income below the poverty line tend to have low health literacy (Kutner et al., 2006). Also, Nielsen-Bohlman and colleagues suggest that it is more common for individuals to have low health literacy if they live in southern and western states. Still, more research is needed on how health literacy differs across geographic areas. One example of efforts in this area of research is the development of a new measure of health literacy that uses demographic imputation with the intention to map predicted areas of low health literacy (IOM, 2009).

Finally, the mixed results of gender effects show a need for more accurate measurement of health literacy. Some findings report that health literacy is not thought to differ between men and women (e.g., Paasche-Orlow et al., 2005), whereas some suggest that men are more susceptible to low health literacy (e.g., van der Heide et al., 2013a). This could be an implication of how health literacy is measured, as additional research notes that men may have greater quantitative skills related to health literacy, while women exhibit greater prose and document literacy skills (Kutner et al., 2006); however, health literacy is often measured as one entity rather than one with multiple dimensions.

Health Literacy and Health Outcomes

The prevalence of low health literacy and its distribution across demographic categories in the United States warrants critical and immediate attention because of the harmful impact it has on health decisions and outcomes. These associations are well documented in health outcome research. In 2004 the Agency for Healthcare Research and Quality (AHRQ) produced an initial systematic review of the literature to better understand the relationship between “literacy” and health outcomes (Berkman et al., 2004). A majority of the measures included in the reviewed studies were indeed measures of health literacy such as the Rapid Estimate of Adult Literacy in Medicine (REALM). In addition to this full report, a peer-reviewed journal article was created that devotes specific attention to the relationships between literacy and health outcomes, rather than emphasizing the implications these relationships have for policy and health-care-related practice, as was outlined in the 2004 Berkman AHRQ piece (DeWalt, Berkman, Sheridan, Lohr, & Pignone, 2004). This second report, led by DeWalt and colleagues, outlines the relationships between low health literacy and overall poorer health—including health knowledge, disease indicators, and an individual’s use of health services (DeWalt et al., 2004). Moreover, given the substantial increase in attention to and development of health literacy in the 21st century, a subsequent systematic review was performed in 2011 by Berkman and colleagues. This review supported results concluded by DeWalt, adding a number of points not covered by the first review. A brief overview of the findings from these reviews follows in the next sections.

First, the review by DeWalt and colleagues depicts that adults having low health literacy tended to have less knowledge, in general, about health topics. Through this review it was determined that low health literacy was associated with less knowledge about a health topic or concern such as smoking (Arnold et al., 2001), asthma, hypertension, diabetes (Williams, Baker, Honig, Lee, & Nowlan, 1998), HIV (Kalichman et al., 2000; Kalichman & Rompa, 2000b), and reproductive health (Gazmararian, Parker, & Baker, 1999). Having less knowledge about important health documentation such as medical discharge instructions (Conlin & Schumann, 2002) was also related to having low health literacy. The second systematic review, conducted by Berkman and colleagues, added that patients lacking health literacy skills struggled with interpreting labels on prescription medications and packaged foods (Davis et al., 2006; Rothman et al., 2006; Wolf et al., 2007).

Links between health literacy and various health behaviors are not limited to the United States. Higher health literacy is inversely related with behaviors such as smoking, drinking, and physical inactivity in China (Liu, Liu, Li, & Chen, 2015) and positively associated with vegetable consumption in the United Kingdom (von Wagner, Knight, Steptoe, & Wardle, 2007). Additionally, a survey in the Netherlands showed that health literacy and patient activation partially influence each other, and these two variables predict health information seeking and use (Nijman, Hendriks, Brabers, de Jong, & Rademakers, 2014). Given these findings, it may be that patients with low health literacy have a poor general understanding of health topics and how to use this information. As such, it is likely that making health-related mistakes or poor decisions is more common among those with low health literacy.

Indeed, in addition to having less knowledge about health topics and health documents, low health literacy is often associated with a variety of negative health indicators and behaviors. For example, depression (Gazmararian, Baker, Parker, & Blazer, 2000; Gordon, Hampson, Capell, & Madhok, 2002; Kalichman & Rompa, 2000a) and poor monitoring and control over chronic illnesses such as type 2 diabetes (Schillinger et al., 2002), HIV (Kalichman & Rompa, 2000b), and hypertension (Williams, Baker, Parker, & Nurss, 1998) are all related to having low health literacy. The updated systematic review performed by Berkman and colleagues (2011) adds that having low health literacy may also be associated with a decreased likelihood of taking medications appropriately, where patients included in one study exhibited difficulty identifying the medications for which they were prescribed (Kripalani et al., 2006a).

Low health literacy is also associated with an individual’s use of the health-care system. Patients having low health literacy tend to experience a greater number of hospital visits (Baker, Parker, Williams, & Clark, 1998; Baker et al., 2002) and receive fewer health screenings than patients who have adequate health literacy. A key finding highlighted that patients with low health literacy often lacked knowledge about critical health screenings such as that for cervical (r=0.31) (Lindau et al., 2002) and breast cancer (r=0.20) (Davis et al., 1996). Research regarding health literacy and health-related screenings traverses a number of health contexts, where low health literate patients are also less likely to get vaccinations, pap smears, mammograms (Scott, Gazmararian, Williams, & Baker, 2002), and some STI screenings (Fortenberry et al., 2001). Studies from other countries support this line of research. For example, a survey targeting elderly Chinese showed that higher levels of health literacy were associated with a decreased likelihood of partaking in risky health behaviors (e.g., smoking, drinking) (Liu, 2015). A U.K. study identified that health literacy is related to actual health (e.g., physical fitness, BMI, and natural teeth) (Mõttus et al., 2014). When people had low health literacy, their level of physical fitness was low, body mass index was greater, and they had fewer natural teeth. This association between health literacy and physical and psychological well-being was also found in Japan (Tokuda, Doba, Butler, & Paasche-Orlow, 2009).

The second systematic review adds that several studies determined that patients with low health literacy were more likely to visit an emergency room (Berkman, Sheridan, Donahue, Halpern, & Crotty, 2011), which results in exorbitant health-care costs each year. Complications related to low health literacy result in a tremendous price in health-care costs with annual estimates over $100 billion (Vernon, Trujillo, Rosenbaum, & DeBuono, 2007). These costs are only expected to increase if efforts are not devoted to improving health literacy. In addition, despite the number of studies focused on understanding the impact that having low health literacy has on health decisions and outcomes, it should be noted that much of this evidence is weak and inconsistent (Berkman et al., 2011). International studies have shown different patterns from U.S. findings or unexpected results, making it more difficult to reach a firm conclusion. For example, a Taiwanese survey using the Mandarin Health Literacy Scale (MHLS) found that health literacy was not related with ER utilization, and when demographic information is controlled for there is no relationship between health literacy and self-rated mental health (Lee, Tsai, Tsai, & Kuo, 2010).

Finally, it must be recognized that findings of health literacy across countries are inconsistent—especially health literacy research conducted in non-English-speaking countries and published in academic journals in those countries (see Barry et al., 2013). Therefore, it is challenging to arrive at a better global understanding of link between health literacy and outcomes.

Conceptual Models

Given the immense research devoted to understanding the factors that impact health literacy and how health literacy relates to health outcomes, it is important to begin to organize these findings into a conceptual model that can be used to guide future research. There are several existing conceptual models of health literacy, each of which argues for a different view on this important concept. Perhaps one of the most common health literacy frameworks is the causal pathway model developed by Paasche-Orlow and Wolf, which incorporates findings from a number of studies to place health literacy in the context of health outcomes (Paasche-Orlow & Wolf, 2007). In this model, health literacy is thought to be a product of numerous demographic and individual-level variables including the aforementioned race/ethnicity, education, and age factors. Additionally, one’s occupation, employment, income, social support, culture, and language are also thought to have a direct relationship with health literacy. This model also incorporates an individual’s cognitive and perceptual capacities (e.g., vision, hearing, etc.) and their impact on health literacy. Health literacy, in this model, is thought to directly impact a patient’s access and utilization of health services, communication exchanges and relationship with health-care providers, and a patient’s self-care. It is clear, given findings described in the previous section, that research supports each of these described relationships.

The causal pathway model summarizes the existing findings in the field of health literacy. Additional models of health literacy focus on outlining what health literacy is, conceptually speaking. One argument in the field is that health literacy is the interaction between the skills of a patient and the demands of the health-care system (IOM, 2009). As such, this model suggests that there are two key modes for increasing health literacy—one through promoting patient skill sets and the other through making improvements in the health-care system, such as health-care materials that are easier to read and use. This model is thought to reflect the “dual nature of communication” (p. 91), where individuals interact with information to which they are presented (IOM, 2009). More information about the specific communication efforts developed in the field of health literacy research are outlined in a following sections:“Health-care Provider Education and Interpersonal Communication” and “Print Materials.

Still other models of health literacy propose that this concept includes multiple perspectives, all of which play key roles in making health-related decisions. Zarcadoolas and colleagues argue that in addition to general literacy, a patient must also have adequate science, civic, and cultural literacy in order to be “health literate” and make appropriate health decisions (Zarcadoolas, Pleasant, & Greer, 2005). Science literacy is directly tied to health literacy in this “expanded model” because the scientific method and “fundamental scientific concepts” (p. 197) are an integral part of how health decisions and recommendations, especially in public health, are made. Similarly, civic and cultural literacy are needed to determine the relevance of health-related issues in a community and how they are presented through different sources, including the media. For example, having an awareness and understanding of current events can have direct implications for the type of decision made about a personal health issue and how that decision is made. It is important to consider that “health” topics do not exist in a vacuum—they are deeply entwined with other concepts that could directly impact one’s ability to find, understand, use, and communicate about health information in an effort to make informed health decisions.

Conceptual models of health literacy pose a number of ways to explore this important topic. Research that aims to test these models is needed and could shed light on the strength of these relationships. It is necessary that future research builds from existing models so that a conceptual base can be established for health literacy. A key component in moving forward with these initiatives is a focus on the measurement of health literacy, which, as it stands currently, is highly fragmented (Pleasant, McKinney, & Rikard, 2011).

Measurement

The concept of “health literacy” originally emerged from general “literacy”—a person’s ability to read text materials (Sorensen et al., 2012). In the early 1990s assessments of general literacy suggested that as much as one-half of the American population had low to marginal literacy abilities (Ad Hoc Committee on Health Literacy, 1999). This alarming prevalence became a central concern for research during that time. A relationship between low general literacy and having poorer health outcomes became apparent through these research efforts. As a result, specific attention was devoted to understanding “literacy” in a health context (Sorensen et al., 2012). One key effort was the development of the Rapid Estimate of Adult Literacy in Medicine (REALM), one of the first measures of health literacy. This measure requires individuals to pronounce three lists of progressively challenging medical and health-related words such as cancer (list one), fatigue (list two), and allergic (list three) (Davis et al., 1991, 1993). This measure, and its reliance on individuals having to read health-related words, truly reflects how health literacy was born out of general literacy.

As the relationship between literacy and health became more apparent, new measures of health literacy began to flood this area of research. The Test of Functional Literacy in Adults (TOFHLA) (Parker, Baker, Williams, & Nurss, 1995) and its corresponding short form (S-TOFHLA) (Baker, Williams, Parker, Gazmarian, & Nurss, 1999) are measures of health literacy that employ Cloze reading passages that incorporate both written and numerically based questions. The full TOFHLA includes seven numeracy and three reading passages, while the short form includes four numeracy and two reading passages. For correct responses to the questions associated with these passages, patients are given points ranging from zero to 100. A score of 75 is the cut-off point for having “adequate” health literacy.

Both the REALM and the TOFHLA use health contexts to capture patient health literacy; however, neither measure specifically includes commonly used health information. As such, a new measure of health literacy was created, which measures this concept based on a patient’s ability to answer questions about a nutrition label. The Newest Vital Sign (NVS) was the first measure to take existing health information and incorporate it into health literacy measurement. In response to a nutrition label, patients are asked six questions and are awarded a point for each correct response. Scores range from 0 to 6, where a score of 4 and higher indicates adequate health literacy (Weiss et al., 2005).

Another effort during this time was the creation of the NAAL. The development of a health literacy-specific survey was initiated as a response to a call from Healthy People to include a branch of the general literacy survey, the National Adult Literacy Survey (NALS), to be specifically devoted to health literacy (Berkman et al., 2010). Findings from the NAAL were alarming—where 36% individuals had basic or below basic health literacy (Kutner et al., 2006). This survey was the first (and only) survey to measure health literacy at a national level. Additionally, the NAAL measured health literacy as three components: prose, document, and quantitative literacies, rather than focusing on reading ability alone, as used by the REALM (Kutner et al., 2006). Unfortunately, the NAAL has strict restrictions on who can access the data and instruments used in the study (IOM, 2009), which severely limits the ability to conduct NAAL follow-up studies.

Two trends are largely found in the measurement research in other countries. First, the health literacy measures used in the United States are translated to each country’s version; the existing scale is refined according to each country’s culture. Mantwill and Schulz (2016) showed that the simplified Chinese version of the S-TOFHLA is reliable to use in China. However, in contrast to the U.S. findings, no significant relationships between income, age, and education and health literacy were found. Rowlands et al. (2013) added evidence that NVS-UK is valid. Since the instrument measuring text comprehension and numeracy skills was applied in English culture, the application was easy. Contrary to this, the Dutch version of NVS showed the difficulties in applicability (Fransen, Van Schaik, Twickler, & Essink-Bot, 2011). This is because the layout and content of U.S. food labels are different from those in the Netherlands.

The second trend of the health literacy measures is to develop each country’s own measurement. Commonly, more reliable measures could be created by considering cultural sensitivity and the difference of language/sentence structure. The Korean Health Literacy Scale (KHLS) includes comprehension, numeracy, health-related terms to measure health literacy, and adds demographic variables (Lee, Kang, Lee, & Hyun, 2009). Leung et al. (2013) developed the Chinese Health Literacy Scale for Chronic Care (CHLCC), and four levels of cognition—remembering, understanding, applying, and analyzing—were included. The important finding in this study was to eliminate the confounding effect of language shown in the U.S. studies by identifying the correlations of the CHLCC and Chinese literacy. That is, low health literacy is not a result of using a second language (e.g., English), so even if one’s native language is used, the literacy of the language lowers health literacy.

In the early 21st century there have been a number of calls to improve health literacy measurement specifically (IOM, 2009). As a result of this call, there are now at least 51 different measures of health literacy (Haun, Valerio, McCormack, Sorensen, & Paasche-Orlow, 2014). Although there are now several methods of measuring health literacy (which capture the different ways of conceptualizing this concept), this introduces a host of new issues to the area of health literacy research. One includes a compromised ability to compare findings across studies. For example, several of the measures developed for health literacy are specific to a given health context, such as oral health (Naghibi Sistani, Montazeri, Yazdani, & Murtomaa, 2014) and diabetes (Yamashita & Kart, 2011). This fragmentation limits our ability to study health literacy and build a research evidence base (Mackert, Champlin, Su, & Guadagno, 2015; Pleasant, McKinney, & Rikard, 2011). The weaknesses of the existing health literacy tools are discussed in Europe as well; the tools do not measure various dimensions of health literacy and some of them are overly focused on patients in the clinical setting (Sørensen et al., 2013).

It has been criticized that the diverse aspects of health literacy are clouded because the measurements of health literacy across countries tend to focus on functional health literacy. However, health literacy affects empowerment beyond reading and writing skills, and the development of these skills can yield beneficial personal and social outcomes (Nutbeam, 2000). Nutbeam (2008) argues that health literacy measures should extend beyond general literacy skills to ensure that health literacy is represented “comprehensive[ly]” and as a “distinctive” concept (p. 2076) (Nutbeam, 2008).

Health-care Provider Education and Interpersonal Communication

Another important aspect of health literacy research is the impactful role that health professionals contribute to patient health literacy, especially regarding patient-provider communication exchanges. The Berkman et al. (2010) definition of health literacy incorporates the important skill of communicating about health information, which is particularly crucial when it comes to how health-care providers of all types interact with patients. The breakdown in provider-patient communication due to low health literacy is one reason these patients suffer poorer outcomes, as they do not understand provider instructions and may make errors in managing their own conditions as a result (DeWalt et al., 2004; Schillinger, Bindman, Wang, Stewart, & Piette, 2004).

One way to deal with this problem is to provide resources for healthcare providers interested in improving their communication skills, such as the American Medical Association’s Health Literacy: A Manual for Clinicians (Weiss, 2003). This and other resources emphasize interpersonal communication skills for providers, especially slowing down when speaking to give the patient time to process information and using plain and nonmedical language whenever possible. Other specific techniques for ensuring information is delivered (e.g., drawing pictures) and checking on patient comprehension (e.g., the teach-back approach) can give providers specific tools to improve their communication with lower-health-literate patients. It is also recommended that health-care organizations create a shame-free environment to help ensure that patients feel they are in a trusted setting—one in which they can safely ask questions when uncertain about what they are being told.

Another approach to improving provider-patient communication is to implement formal training programs. One such program for physician education was designed and implemented, and it achieved positive results (Kripalani et al., 2006b; Kripalani & Weiss, 2006). A similar program for health-care workers of all kinds was delivered across a range of health-care organizations with similarly positive results (Mackert, Ball, & Lopez, 2011). A key finding of that research was that health-care workers reported overestimating their own knowledge of health literacy before participating in the training, suggesting a need to continue raising awareness about health literacy among practitioners.

Developing Print Materials

Just as there are guidelines to help ensure effective interpersonal communication between health-care providers and patients, manuals and tools for helping develop clear print materials for lower-health-literate patients are also a critical resource for promoting health literacy.

One example is the National Cancer Institute’s Clear & Simple: Developing Effective Print Materials for Low-Literate Readers (National Cancer Institute, 2003). Similar to recommendations for health-care providers, there is an emphasis on using plain language whenever possible. Other tools for improving print materials include writing with shorter sentences, using bulleted lists, relying on consistent headings and subheadings, and using relevant images to support text content. The goal should be to limit educational materials to a small number of key points of content to avoid information overload.

Other tools are available to help assess existing print materials for their suitability and help provide guidance for improving them. One such tool is the Suitability Assessment of Materials (SAM), which was originally designed for print materials but is also used for audiovisual materials (Doak, Doak, & Root, 1996); the SAM scoring sheet includes scoring around content, literacy demand, graphics, layout and typography, learning stimulation and motivation, and cultural appropriateness. More recently, the Centers for Disease Control and Prevention developed the Clear Communication Index (CCI) to support its efforts to comply with federal plain language guidelines (Centers for Disease Control and Prevention, 2014). The CCI assesses materials in seven areas: main message and call to action, language, information design, state of the science, behavioral recommendations, numbers, and risk. Tools such as the SAM and CCI provide important practical guidance for the development of materials that will work for audiences of all levels of health literacy.

The usage of other approaches, such as the development of audio or interactive content in addition to print materials, have critical implications beyond enhancing the understanding of the materials—including increasing access to reach specific populations. For example, patients with visual impairments (VIs) require different routes to health information from sighted patients and may also require specific health information that is different from sighted populations (Harrison, Guy, Mackert, Walker, & Pound, 2012; Harrison & Lazard, 2015). As such, it is necessary for future research to push further the adaptation of existing visual focused materials to become audio-based or tailored to other patient needs.

Improving Health Literacy

Given the negative health implications and prevalence of low health literacy in the United States, research aimed at improving health literacy is needed. However, there are a number of obstacles already outlined in this entry that stand in the way of developing interventions for building health literacy, such as the fragmentation in measurement and inconsistency in conceptualization. In an Institute of Medicine report on health literacy measurement, Pleasant argues for eight principles to improve health literacy measurement (IOM, 2009). For example, Pleasant views health literacy as a multidimensional construct that should be measured through several different data collection methods (p. 20). These ideas could also be incorporated to improve how we discuss and conceptualize health literacy.

Additionally, Pleasant argues that a central component of progress for the field is thinking about health literacy as more of a social or public health issue rather than one that operates solely in clinical settings. Historically, health literacy has been observed and discussed within health-care environments. Pleasant notes that many of the existing measures of health literacy were created as “screening instruments,” used to determine whether or not someone has low health literacy and not how much this person differs across a health literacy scale. This emphasis on understanding health literacy in clinical settings clearly neglects a large span of other health-related areas, especially those of public health, which emphasize the greatest health for the greatest number of people. Given this, Pleasant and Kuruvilla developed a “Facts of Life” list that includes health facts that apply to everyone, across the globe. For example, “Cigarette smoking causes lung cancer” (p. 156). Interestingly, in a study where the Facts of Life were administered as a true/false series of survey questions, health professionals scored lower on the scale than did members from the general public in two (Mexico, China) of four countries tested (no difference in Ghana and in India professionals performed better) (Pleasant & Kuruvilla, 2008). Findings from this study suggest that “public health” health literacy may be different from health literacy, which currently has a greater focus on clinical and health-care settings.

Although there are a number of challenges facing the field of health literacy research, some scholars argue that recent changes in U.S. policy might contribute to overall improvements in this critical area of health care. For example, Koh and colleagues (2012) note that the Affordable Care Act, enacted in 2010, emphasizes the importance of health literacy training for health-care practitioners, which can be a direct benefit to patients. Additionally, this policy promotes better patient understanding and use of health insurance by “streamlining” plan options and functions in the United States and requiring “clear, consistent, and comparable” (p. 436) health insurance choices. Likewise, these scholars point to a number of other patient-centered policies including the National Strategy for Quality Improvement in Healthcare, the National Prevention and Health Promotion Strategy, the U.S. Department of Health and Human Service’s Partnership for Patients, and the Plain Writing Act of 2010, which similarly aim to devote greater attention to the concerns and needs of the patient (Koh et al., 2012).

The emphasis on patient-centered care and health literacy is also echoed in the U.S. National Action Plan to Improve Health Literacy (Koh et al., 2012; U.S. Department of Health and Human Services, 2010). Similar to the aforementioned policies, this plan devotes specific attention to what practitioners, hospitals, and health-care settings, and organizations can do to promote health literacy and highlights that patients of any background should be able to receive interpretable and actionable health information (U.S. Department of Health and Human Services, 2010). Although in U.S. healthcare policy there is increasing interest in the topic of health literacy, there are a number of avenues for future research to address that might continue to push this field forward.

Issues Facing the Field

Like all academic fields, health literacy research faces a variety of challenges to advancing knowledge of health literacy itself, as well as how it is related to patient outcomes in a variety of health contexts. Here we highlight three such issues: fragmentation, measurement, and the need to broaden the focus of health literacy research.

The first issue, that of fragmentation, results from what could also be considered a strength of the field—people interested in health literacy come from a host of background and trainings, and they care about health literacy in an almost endless assortment of health contexts. But Mackert et al. (2015) argued that fragmentation driven by the interests in particular populations, diseases, and communication channels has several negative outcomes. These include scholars sometimes “reinventing the wheel” with regard to measurement or definitions of health literacy in situations where they could build on the existing literature and related research of other scholars. A narrower focus on health literacy—at the expense of a broader view of health literacy and its impact across health conditions—can also lead to research findings that are harder to apply to other health conditions and populations.

The second issue, that of health literacy measurement, has been acknowledged previously by a variety of scholars (Pleasant & McKinney, 2011; Pleasant et al., 2011). Although the field has shown tremendous growth in terms of the number of available instruments, many of these do not fully capture all aspects of health literacy that are reflected in a definition such as that provided by Berkman et al. (2010): the degree to which individuals can obtain, process, understand, and communicate about health-related information needed to make informed health decisions. This is in part a reflection of the fragmentation issue just discussed, as there are disease-, population-, and channel-specific health literacy measures created for a host of studies (Mackert et al., 2015). Further it can be difficult to determine what even established health literacy assessments are measuring. With the Newest Vital Sign (NVS), for example, does a low score indicate a person who could not obtain the information from the ice cream label or understand how to use the information they find? The application of newer methods such as eye tracking can help untangle these issues—people who score lower on the NVS spend more time on irrelevant information, for example (Mackert, Champlin, Pasch, & Weiss, 2013)—but there remains much work on improving understanding of what current measures are assessing, as well as better linking future measurement instruments to widely agreed upon conceptualizations of health literacy.

A third major issue facing the field relates to trends in the studies being conducted. Weiss (2015) argues that much health literacy research focuses on limited areas: assessing health literacy skills, measuring health literacy among patients, and assessing the readability of patient education materials. The argument is that we need to spend less time demonstrating things we already know (e.g., patient education materials are frequently written at too high a reading level) and instead focus on research that links health literacy to patient-oriented outcomes. This could mean testing interventions designed to improve health literacy and communication to assess impacts on quality and efficiency of care, assessing different teaching approaches to improving health-care provider communication with low-health-literate patients, and moving away from only written patient education materials to explore other innovative models of improving patient education.

Conclusion

Health literacy is a rich and active field, with implications ranging from how organizations can best deliver care to the quality of interpersonal interactions between health-care providers and their patients. Although substantial challenges face scholars and practitioners focused on health literacy, the continued growth of research interest—and funding support for that research—should help the field continue to advance and directly improve the outcomes of lower-health-literate patients. Successfully improving health-care delivery and building health literacy capacity among patients will require a focus on health-care organizations, health-care providers, and the patients themselves. The end result of successful interventions across all of these levels and areas will be better health for patients and reduced costs for the health-care system.

Historiography

Emerging from research that pointed to a relationship between general literacy and health outcomes, it is clear that health literacy has endured a number of transformations over the years. Additionally, there are still a number of persistent challenges that need to be tackled by scholars in the field of health literacy and fields related to this important topic. For example, to date there is only one nationally representative survey of health literacy in the United States. As such, the prevalence of low health literacy in the United States in the early 21st century is not known but rather estimated using the NAAL data, which is now over a decade old at the time of this writing. Similarly, given its origination from general “literacy” capacities, health literacy research tends to emphasize functional skills and the development of printed reading materials; more can be done to improve health materials for those with audio, visual, cognitive, or other impairments. With the quickly evolving abilities of new technology, scholars and practitioners alike should be working to develop health literacy tools that aid in patients’ skills to find, understand, use, and communicate about health information.

Health literacy exhibits relationships with a number of health decisions and outcomes; however, findings are often inconsistent across methodological approaches and health topics. More research that helps to further explicate the concept of health literacy is needed. For example, reviews by Berkman and Sorensen and their colleagues uncovered 13 (Berkman et al., 2010) and 17 (Sorensen et al., 2012) different definitions of health literacy in their respective evaluations on the topic. An agreed-upon definition, conceptualization, and measurement used consistently across studies are needed to advance the research in this area. Notably, as the concept stands currently, it would be difficult to quantify the change in health literacy that resulted from an intervention aimed at improving this concept: many of the instruments designed to measure health literacy are viewed as “screening” measures, capable only of putting patients into “health literate” and not “health literate” categories (IOM, 2009).

As already discussed earlier in this paper, there are a variety of challenges facing the field. There is the issue of how health literacy is framed—as a deficit to be overcome vs. a skill and capacity to be developed. Others include the potential for fragmentation as researchers from different fields bring their own interests and perspectives to health literacy research, improving measurement, and better linking health literacy interventions to positive outcomes such as improved patient health and reduced health-care costs.

Primary Sources

A foundational reading in the area of health literacy is Health Literacy: A Prescription to End Confusion, published by the Institute of Medicine (Nielsen-Bohlman et al., 2004). This book provides a summary written by the Committee on Health Literacy, comprising leaders in the field. Although over a decade old, many of the findings and challenges continue to be relevant today. For scholars new to this field, this is an excellent introductory piece of reading to get acquainted with the benefits and problems faced by the area of health literacy.

Although direct access to the NAAL instruments and data is limited and it is now twelve years after its administration (IOM, 2009), the summary of the NAAL findings is substantial and offers detailed evidence of the relationship between prose, document, and quantitative health literacies and health outcomes (Kutner et al., 2006). As of this writing, this is the only health literacy study to include a nationally representative sample and thus is another quality resource for new scholars. This source is most commonly cited to support the prevalence of low health literacy in the United States.

Additionally, the systematic reviews outlined in this entry (the two by Berkman and another by DeWalt and their respective colleagues) also serve as important works in the field of health literacy. In the early 21st century there have been a large number of research efforts aimed at exploring health literacy. These reviews organize the findings from these important studies and can serve as a collection of information on a specific finding related to health literacy. As scholars move toward agreement on a definition, conceptual model, and measurement tool, it is hoped that comparison of research findings across studies will become more efficient.

Further Reading

Ad Hoc Committee on Health Literacy. (1999). Health literacy: Report of the council on scientific affairs. Journal of the American Medical Association, 281, 552–557.Find this resource:

    Berkman, N. D., Davis, T. C., & McCormack, L. (2010). Health Literacy: What Is It? Journal of Health Communication: International Perspectives, 15(2), 9–19.Find this resource:

      Berkman, N. D., Sheridan, S. L., Donahue, K. E., Halpern, D. J., & Crotty, K. (2011). Low health literacy and health outcomes: An updated systematic review. Annals of Internal Medicine, 155(2), 97–107.Find this resource:

        Coleman, C., Kurtz-Rossi, S., McKinney, J., Pleasant, A., Rootman, I., & Shohet, L. (2008). The Calgary charter on health literacy: Rationale and core principles for the development of health literacy curricula. The Center for Literacy of Quebec. Retrieved from http://www.centreforliteracy.qc.ca/sites/default/files/CFL_Calgary_Charter_2011.pdf.Find this resource:

          DeWalt, D. A., Berkman, N. D., Sheridan, S., Lohr, K. N., & Pignone, M. P. (2004). Literacy and health outcomes: A systematic review of the literature. Journal of General Internal Medicine, 19(12), 1228–1239.Find this resource:

            Doak, C. C., Doak, L. G., & Root, J. (1996). Teaching patients with low literacy skills (2d ed.). Philadelphia: J. B. Lippincott.Find this resource:

              Frosch, D. L., & Elwyn, G. (2014). Don’t blame patients, engage them: Transforming health systems to address health literacy. Journal of Health Communication, 19(2), 10–14.Find this resource:

                Harrison, T., Guy, S., Mackert, M., Walker, J., & Pound, P. (2012). A study of the health literacy needs of people with visual impairments. Research and Theory for Nursing Practice: An International Journal, 26, 142–160.Find this resource:

                  Harrison, T., & Lazard, A. (2015). Advocating for a population-specific health literacy for people with visual impairments. Health Communication, 30, 1169–1172.Find this resource:

                    IOM. (2009). Measures of health literacy: Workshop summary. Washington, DC: National Academies Press.Find this resource:

                      Nielsen-Bohlman, L., Panzer, A., & Kindig, D. (Eds.). (2004). Health literacy: A prescription to end confusion. Washington, DC: National Academy of Sciences.Find this resource:

                        Paasche-Orlow, M. K., & Wolf, M. S. (2007). The causal pathways linking health literacy to health outcomes. American Journal of Health Behavior, 31(1), 19–26.Find this resource:

                          Pleasant, A., & Kuruvilla, S. (2008). A tale of two health literacies: Public health and clinical approaches to health literacy. Health Promotion International, 23(2), 152–159.Find this resource:

                            Sorensen, K., Van den Broucke, S., Fullam, J., Doyle, G., Pelikan, J., Slonska, Z., & Brand, H. (2012). Health literacy and public health: A systematic review and integration of definitions and models. BMC Public Health, 12, 1–13.Find this resource:

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