Health Literacy Barriers in the Health Care System: Barriers and Opportunities for the Profession

Health literacy refers to the extent to which an individual has the skills “to obtain, process, and understand basic health information and services” (Institute of Medicine [IoM, now National Academy of Medicine], 2004, p. 32). Low health literacy is associated with poorer health outcomes and poorer use of health care services. In 2004, the IoM’s landmark report Health Literacy: A Prescription to End Confusion highlighted the need to address health literacy barriers in the U.S. health care system (IoM, 2004). Over the following decades, various national initiatives have similarly advocated for addressing health literacy with the ultimate goal of promoting health equity and social justice (IoM, 2015; U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion, 2010; Wilson-Stronks, Lee, Cordero, Kopp, & Galvez, 2008). However, low health literacy continues to be a barrier to obtaining effective and high-quality care for many individuals from disadvantaged groups. Moreover, its importance remains largely ignored by the increasingly complex U.S. health care system. Lack of structural attention to health literacy affects the potential of individuals to engage in health prevention and promotion activities while also limiting opportunities for social workers to deliver optimal services to patients who need it most. Indeed, it is likely that low health literacy is a greater obstacle in providing services than perceived by practitioners. In this Viewpoint, we seek to increase the awareness of health literacy among social workers by discussing relevant literature on its role in health outcomes and the complex process of navigating the health care system. We conclude by suggesting strategies for social workers to address health literacy barriers in the health care system.

Health Outcomes

Low health literacy is highly prevalent in the United States, particularly among older adults and racial or ethnic minorities (Rikard, Thompson, McKinney, & Beauchamp, 2016). Abundant and consistent research has shown that low health literacy is associated with a wide array of adverse health outcomes including poorer self-rated overall health status (Sentell, Zhang, Davis, Baker, & Braun, 2014), limited knowledge of chronic disease management (Poureslami, Nimmon, Rootman, & Fitzgerald, 2017), and lower medication adherence (Zhang, Terry, & McHorney, 2014). Studies have also documented that low health literacy is associated with higher health care costs (Palumbo, 2017), higher use of emergency services (Griffey et al., 2014), and increased likelihood of 30-day hospital readmission (Mitchell, Sadikova, Jack, & Paasche-Orlow, 2012), among others. Available evidence underscores that low health literacy is a significant public health problem projected to worsen as the U.S. population is aging and becoming more racially and ethnically diverse (Vespa, Armstrong, & Medina, 2018).

Navigating the Health Care System

Health literacy encompasses how individuals navigate the health care system. Those in need of health care services need to apply a wide range of health literacy skills to obtain health care coverage, access services, communicate with health care providers, and understand their options and act on them. First, individuals with low health literacy may experience challenges in applying and obtaining health insurance coverage: The process is complex and there can be many options. Programs in which social workers or navigators empower consumers by assisting them in understanding their health insurance options could have a major impact on enrollment experiences among adults with low health literacy. Second, poor oral communication quality with health care providers is another challenge for individuals with low health literacy. Effective oral communication is essential because it may be the most important method by which health information is obtained, yet it has been shown that patients only recall about half of the information a physician conveys during an encounter (Schillinger et al., 2003). Furthermore, providers often overestimate their patients’ level of health literacy (Dickens, Lambert, Cromwell, & Piano, 2013). Various strategies have been proposed in the literature to improve oral communication between providers and patients with low health literacy, such as integrating routine brief health literacy screening tools into clinical assessments and electronic health records (Cawthon, Mion, Willens, Roumie, & Kripalani, 2014), increasing the use of plain and contextualized language while limiting the use of medical jargon (Roter, 2011), presenting five (or fewer) fragments of information to a patient per encounter (Baker et al., 2011), and assessing patient recall and comprehension of concepts to identify knowledge gaps (Schillinger et al., 2003).

Third, processing and understanding written forms of communication such as consent forms, medication adherence instructions, and brochures can be a challenge. Such written materials often involve the use of a computer, arithmetical, or financial skills. For example, dietary information usually incorporates instructions regarding portion sizes and interpretation of food labels, and medication adherence instructions can require complex details about schedule, dose, and side effects. Therefore, targeting all written materials for individuals with low health literacy may be an effective intervention at the organizational level. For optimal comprehension of written materials, it is recommended that information is written in clear and concise language at a sixth-grade or lower reading level. The use of visual aids such as pictures, illustrations, and tables is also commonly recommended. Many hospitals and clinics are now providing patients with health information through Internet-based portals, but racial or ethnic minorities and patients with lower income, education, and health literacy are significantly less likely to access and effectively use them (Sarkar et al., 2010)—a phenomenon known as the digital divide. The use of formative research, focus groups, and participatory design efforts involving those with limited health literacy to inform the content of e-health portals and programs has much potential for addressing the digital divide.

Fourth, language and cultural barriers among individuals with limited English proficiency, including immigrants and refugees, can interfere with the process of successfully navigating the health care system (for example, scheduling an appointment and communicating with providers). Written and oral communication must be available in a variety of languages in accordance with the target population. Notably, translation by itself is not enough; written and oral communications should reflect the beliefs, customs, and traditions of the target population. Finally, the fragmented nature of the U.S. health care delivery system represents an enormous challenge for individuals with low health literacy. Highly prevalent chronic conditions such as cardiovascular disease and cancer require patients to navigate between the primary care physician, surgeon, specialist, nutritionist, pharmacist, and social worker, among others. To promote the provision of high-quality health care, some encouraging innovations are happening including integrated health care services promoting the use of social services in communities (for example, CommunityRx and Michigan Pathways to Better Health) to address social, economic, and clinical factors that promote the health of individuals. Community health teams comprising nutritionists, behavioral and mental health specialists, nurses, and social workers have been proposed as a promising approach for integrating clinical care and community-based health promotion and prevention services.

Implications for Social Workers

Combined and bold efforts by multidisciplinary teams of health professionals including social workers are required to reduce and eliminate health literacy barriers in the U.S. health care system. Social workers can promote integrated approaches to address health literacy as a social determinant of health influenced by multiple socioecological levels including the social, physical, and economic environments in which people live. Intersectionality theory, referring to the multiple social categories such as age, racial or ethnic background, gender, sexual orientation, and immigration status that shape patient–provider encounter, also provides an underused but potentially powerful lens to address health literacy. Social workers can promote the use of intersectionality as a lens to inform the design and implementation of integrated structural interventions focused on changing the health care environment. Social workers can engage in training other health care providers, navigators, and community health workers on strategies to address health literacy, such as the ones described in this Viewpoint. Health care professionals should use health literacy and social needs screening tools, and tailor advice to a patient’s health literacy level and socioeconomic status. Furthermore, as members of integrated health care systems, social workers can support and guide patients through complex processes. Increased awareness of health literacy issues is imperative to meet the needs of the increasingly diverse patient populations; thus, it is also recommended that undergraduate and graduate-level curricula include training on health literacy for social workers and strategies to address health literacy, cultural competency, and intersectionality. Finally, there is a gap in social work scholarship on the role of social workers in promoting health literacy. It is therefore recommended that social work practitioners partner with researchers to systematically document and evaluate their role as health literacy champions.

Paula Allen-Meares, PhD, is executive director, Brienne Lowry, MPH, is research associate, and Mayra L. Estrella, PhD, is research assistant professor, Office of Health Literacy and Institute for Minority Health Research, Department of Medicine, University of Illinois at Chicago. Sudaba Mansuri, MSc, is clinical research assistant, Rush University, Chicago. Address correspondence to Paula Allen-Meares, Office of Health Literacy, Department of Medicine, University of Illinois at Chicago, 1819 West Polk Street (MC 764), Suite 246, Chicago, IL 60612; e-mail: pameares@uic.edu.