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Health Literacy: A Prescription to End Confusion 6 Health Systems Mr. G. is a 64-year-old man with chronic hypertension, diabetes, a high cholesterol level, and gout. He saw his primary care doctor because his left leg was swollen and painful. His doctor diagnosed an early cellulitis and prescribes an antibiotic to be taken for 10 days. After 4 days, Mr. G. went to the emergency department, unable to walk because of intense pain and swelling of his entire left leg. His blood sugar and blood pressure were both very high, and he was admitted to the hospital to treat his infection and control his blood pressure. During his emergency department treatment and admission, he was examined by, and spoke to, four different doctors. The fifth doctor to take a history and examine Mr. G discovered that he had taken none of his seven chronic medications, nor the newly prescribed antibiotic given to him when his infection first appeared. Mr. G. explained “You see, I already take 19 pills a day, and when I got another one I got confused about my timing, and I was just so scared I might mess up. My daughter usually helps me with my medicines, but she’s been sick and I didn’t want to worry her.”
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Health Literacy: A Prescription to End Confusion THE CONTEXT OF HEALTH SYSTEMS Navigating the U.S. health-careand public health delivery systems is a complex task with numerous layers of bureaucracy, procedures, and processes. Consequently, an adult’s ability or inability to navigate these systems may reflect systemic complexity as well as individual skill levels. Patients, clients, and their family members are typically unfamiliar with these systems and the associated jargon. Even highly educated individuals may find the systems too complicated to understand, especially when people are made more vulnerable by poor health. Official documents, including informed consent forms, social services forms, and public health and medical instructions, as well as health information materials often use jargon and technical language that make them unnecessarily difficult to use (Rudd et al., 2000). When you have medical forms and stuff, I don’t think it should be complicated for a person to understand what its saying (Rudd and DeJong, 2000). Some of the complexity of the health-care system arises from the nature of health care and public health itself, the mix of public and private financing, and the health information and health-care delivery settings. Unlike many other countries, the United States does not have a single organized national health-care system. Furthermore, the United States has no national health surveillance system, and few common norms exist for basic preventive services such as immunizations. Threats of bioterrorism and new emerging diseases such as SARS continue to complicate the picture of health care. In the past, health management was primarily the domain of the physician, but greater responsibility for health management has shifted to the patient as health care has evolved and cost pressures on care have increased. This has been called self-management, and was identified in the Institute of Medicine (IOM) Priority Areas for National Action report (IOM, 2003b) as one of two cross-cutting issues in improving health-care quality that present the opportunity to improve health across the lifespan, at all stages of health service. In order to make appropriate self-management decisions, health information consumers must locate health information, evaluate the information for credibility and quality, and analyze the risks and benefits, activities that rely on health literacy skills. Consumers must be able to express health concerns clearly by describing symptoms in ways the providers can understand. Both patients and health-care providers must be able to ask pertinent questions and fully understand the available medical information.
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Health Literacy: A Prescription to End Confusion Improvement of health literacy was identified by the IOM report as an essential component of self-management that would affect nearly all aspects of health care. The IOM report further noted that system and policy changes to improve self-management would require involvement by most health-care organizations and providers to address all types of health conditions, providing a means to improve health care for all Americans. Figure 6-1 below is a depiction of the “ecology of health service organizations” that form the U.S. health system (Shortell and Kaluzny, 2000). This figure illustrates the complex relationships of organizations and programs that form the basis of the U.S. health-care system that adults are expected to navigate. The organizations with the most direct impact on patients are in the inner circles and those with a more indirect influence are in the outer circles. Although this complex system could be simplified somewhat by consolidating some of the depicted organizations (such as hospitals and physician groups) into a variety of health networks and health systems, other factors deter such consolidation. For example, tightly integrated managed care systems have failed to grow in response to consumer demands for more choice. Accessing and using the systems effectively is further complicated by the mix of private and public financing mechanisms and interrelationships. Individuals and families must learn how to interact with employers, supplemental private insurance companies, federal and state government FIGURE 6-1 The concentric ecology of organizations in the health-care sector. SOURCE: Health Care Management: Organization, Design, and Behavior, 4th Edition, by Shortell and Kaluzny. © 2000. Reprinted with permission of Delmar Learning, a division of Thomson Learning: www.thomsonrights.com. Fax 800 730-2215.
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Health Literacy: A Prescription to End Confusion programs, and providers who are paid directly, “out-of-pocket.” To complicate matters further, individuals seldom interact with only one aspect of the health-care system. They make decisions about the severity of illness, the ease and cost of various treatment options, and move from self-care to seeking advice, from public to private options, and from primary to tertiary care in complex “patterns of resort” (Scrimshaw and Hurtado, 1987). Yet studies indicate that individuals and families lack the information needed for these activities. Chapter 2 provides evidence that health literacy affects the interaction of individuals with components of the health-care system, and may further affect health status and outcomes. Studies suggest that health information is often more difficult to comprehend than other types of information (Root and Stableford, 1999). Extensive research shows that communication of health information through printed material, multimedia, and interpersonal exchange is often not successful (Baker and Wilson, 1996; Berland et al., 2001; Davis et al., 1996; Graber et al., 1999; MacKinnon, 1984; Meade et al., 1989; Meeuwesen et al., 2002; Reid et al., 1995; Roter et al., 2001; Rudd, 2003; Rudd et al., 2000; Smith et al., 1998). Print and interactive materials have been consistently found to be less understandable by their audience than the authors intended (Kerka, 2000; Rudd et al., 2000). Complex materials frequently used by employers, insurance companies, government programs, and providers, such as consent forms and questionnaires, are difficult for many people to use appropriately (Gaba and Grossman, 2003; Hochhauser, 1997; Kaufer et al., 1983; Morales et al., 2001; Osborne and Hochhauser, 1999). All but the most sophisticated health policy experts have difficulty understanding the many facets of health and health care. Most of us are confused by our hospital and medical bills, the choices we have to make regarding health plans and health coverage, and the often contradictory news accounts about the most effective treatments or preventive strategies. Imagine having to face this complexity if you are one of the 90 million American adults who this committee has found “lack the functional literacy skills in English to use the U.S. health care system.”1 1 See Finding 3-1: “About 90 million adults, an estimate based on the 1992 National Adult Literacy Survey (NALS), have literacy skills that test below high school level (NALS Levels 1 and 2). Of these, about 40–44 million (NALS Level 1) have difficulty finding information in unfamiliar or complex texts such as newspaper articles, editorials, medicine labels, forms, or charts. Because the medical and public health literature indicates that health materials are complex and often far above high school level, the committee notes that approximately 90 million adults may lack the needed literacy skills to effectively use the U.S. health system. The majority of these adults are native-born English speakers. Literacy levels are lower among the elderly, those who have lower educational levels, those who are poor, minority populations, and groups with limited English proficiency such as recent immigrants.”
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Health Literacy: A Prescription to End Confusion Finding 6-1 Demands for reading, writing, and numeracy skills are intensified due to health-care systems’ complexities, advancements in scientific discoveries, and new technologies. These demands exceed the health literacy skills of most adults in the United States. Emerging Issues in the Health System Context2 In addition to the general complexity of the current system, the committee has identified a number of emerging themes or issues that are important aspects of the health system context with respect to health literacy. These include Chronic disease care and self-management Patient–provider communication Patient safety and health-care quality Access to health care and preventive services Provider time limitations Health expenditures Consumer-directed health care Each of these topics is briefly discussed in the section that follows, with particular attention to the ways in which these issues may function as barriers to those with limited health literacy. Other issues that are currently salient in the health-care context include health disparities and the increasingly complex health information context; these topics are discussed in Chapter 5. Chronic Disease Care and Self-Management Chronic disease, and the problem of people having to cope with multiple, comorbid conditions, is a critical issue in health care, particularly as the health-care delivery system becomes more and more complex and patients must become the integrators of their own care. Chronic disease exemplifies the interaction of health literacy and health, as patients’ health is often dependent on their ability and willingness to carry out a set of health activities essential to the management and treatment of chronic diseases (IOM, 2002c). The last few decades have seen tremendous advances in the 2 The information in this section is drawn in part from the background paper “Improving Chronic Disease Care for Populations with Limited Health Literacy,” commissioned by the committee from Dean Schillinger, M.D. The committee appreciates his contribution. The full text of the paper can be found in Appendix B.
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Health Literacy: A Prescription to End Confusion care of chronic conditions, including an array of therapeutic options, risk factor modification for secondary prevention of comorbid conditions, the availability of home monitoring tools, and the growth of disease management programs (Bodenheimer, 1999; McCulloch et al., 2000). Despite these advances, health quality and clinical outcomes of patients with chronic diseases vary significantly across sociodemographic lines (Fiscella et al., 2000; Piette, 1999, 2000; Vinicor et al., 2000). Care for those with chronic diseases is more difficult for patients, providers, and families when patients cannot understand or remember the given directions, and or when directions that are given are incomplete and unclear (IOM, 2003b). This is also true in other contexts, such as acute care and public health interventions. The collaboration between patients, providers, the system of care, and the community that is required to optimize health outcomes adds a significant layer of complexity to the delivery of health care to individuals with chronic disease. Effective disease management is predicated on systematic, interactive communication between a population of patients with the disease and the providers and health system with whom they interact (Norris et al., 2002a, b; Von Korff et al., 1997), all occurring in the context of a supportive community whose resources are aligned with patients’ needs (Wagner, 1995). Chronic care involves an ongoing process of patient assessments, adjustments to treatment plans, and reassessments to measure change in patient health status. Without timely and reliable information about patients’ health status, symptoms, and self-care, the necessary health education, treatments, or behavioral adjustments may come late or not at all, compromising patients’ health and increasing the likelihood of poor outcomes. Self-management is essential to successful chronic disease care; patients must remember any self-care instructions they have received from their provider, be able to correctly interpret symptoms or results of self-monitoring, and appropriately problem-solve regarding adjustments to the treatment regimen. Patients also must know when and how to contact the provider should the need arise. A number of studies demonstrate that patients remember and understand as little as half of what they are told by their physicians (Bertakis, 1977; Cole and Bird, 2000; Crane, 1997; Rost and Roter, 1987; Roter, 2000). In addition, because they have knowledge deficits, patients with limited health literacy may be less equipped to overcome such gaps in understanding and memory once they are at home (Williams et al., 1998a, b) and difficulties reading or interpreting instructions (Crane, 1997; Williams et al., 1998b). Cross-sectional studies involving patients with diabetes suggest that traditional self-management education may not eliminate health literacy-related disparities in chronic disease outcomes (Schillinger et al., 2002; Williams et al., 1998b). Focus groups of patients with limited health literacy have identified “health system navigation” (such as knowing whom,
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Health Literacy: A Prescription to End Confusion for what, and when to call for assistance with a problem) as a particularly daunting aspect of chronic disease management (Baker et al., 1996). Building on the Chronic Care Model of Wagner et al. (2001), Schillinger has developed a framework that explores ways to improve chronic disease care and is based on health literacy and related research. This framework is discussed in greater detail in Appendix B, but briefly, the model represents the evidence base for chronic disease care and supports the importance of executive leadership and incentives to promote quality, systems to track and monitor patients’ progress and support timely provider decision-making (Piette, 2000), patient self-management training (Lorig et al., 1999; Von Korff et al., 1997), and community-oriented care. Since self-management practices and clinical outcomes in chronic disease care appear to vary by patients’ level of health literacy (Kalichman and Rompa, 2000; Schillinger et al., 2002; Williams et al., 1998b), the Chronic Care Model, and similar comprehensive, population-based disease management approaches, may offer insights into the ways in which limited health literacy affects chronic disease care and could identify points for potentially successful intervention. Patient–Provider Communication To Err Is Human reported that communication failure was the underlying cause of fully 10 percent of adverse drug events (IOM, 2000b). Management of complex drug therapies, especially in elderly patients, is extremely difficult and requires special attention to the ability of the patient to understand and remember the amount and timing of dose, as well as behavioral modifications required by the regimen (e.g., dietary restrictions) (IOM, 2000b). The patient’s health literacy level as it affects the communication process is therefore an important consideration in health outcomes. There is some evidence of a failure of communication with patients with limited health literacy as currently measured. Patients with chronic diseases and limited health literacy have been shown to have poor knowledge of their condition and of its management (Williams et al., 1998a, b), often despite having received standard self-management education. Patients with limited health literacy have greater difficulties accurately reporting their medication regimens and describing the reasons for which their medications were prescribed (Schillinger et al., 2003a; Williams et al., 1995) and more frequently have explanatory models3 that may interfere with adher- 3 “Explanatory models are the lenses through which cultures perceive and understand illness. They consist of interpretive notions about aspects of illness and treatment including the cause, the timing and mode of onset of the symptoms, the pathophysiological processes involved, the natural history and severity, and the appropriate treatment” (Kleinman, 1980).
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Health Literacy: A Prescription to End Confusion ence (Kalichman et al., 1999). Understanding these explanatory models is essential to good communication regarding care (Good and Good, 1981; Kleinman, 1980). While, by definition, patients with limited health literacy have problems with literacy- and numeracy-related tasks in the health-care setting, a recent study among patients with diabetes demonstrated that these patients also experience difficulties with oral communication (Schillinger et al., 2004). Patients appear to have particular problems with both the decision-making and the explanatory, technical components of dialogue. Furthermore, patients with limited health literacy may be less likely to challenge or ask questions of the provider (Baker et al., 1996; Street, 1991) and may cope by being passive or appearing uninterested (Cooper and Roter, 2003; Roter, 2000; Roter and Hall, 1992; Roter et al., 1997). Health literacy is one of a number of influences on the communication process. Communication between a health-care provider and patient during outpatient visits may also be hampered by several related factors. These include the relative infrequency and brevity of visits, language barriers, differences between providers’ and patients’ agendas and communication styles and other cultural barriers, lack of trust between the patient and provider, overriding or competing clinical problems, lack of timeliness of visit in relation to disease-specific problem, and the complexity and variability of patients’ reporting of symptoms and trends in their health status. The complexities that arise from the interplay of cultural processes and variations in health literacy underlie communications and interactions in the health-care system. Typically this balance is part of a healing relationship governed by cultural beliefs and rituals that manifest as a cultural language. Health-care providers need to comprehend this cultural language in order to reduce misunderstanding. Reciprocal to this understanding are the skills of the people among the different cultural groups to understand what health-care providers are communicating regarding their diagnosis, risks, and treatment options. Diverse cultural groups value distinct processes by which harmony and balance is maintained in the relationships of everyday life. Typically this balance is referred to as healing and along with the dynamics surrounding human relationships, these become “healing relationships” governed by cultural beliefs and rituals that manifest as culturally based language during health and illness. Cultural contexts dominate healing relationships. “Physicians and other health care providers need communication skills … to reduce misunderstanding and the risk of incorrect diagnosis and … to develop … treatment plans that are compatible with the patient’s reality” (Molina et al., 1994:35). Reciprocal to this communication are the skills of the people (individual, families, and communities among different cultural
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Health Literacy: A Prescription to End Confusion groups) to understand what health-care providers are discussing about diagnoses, risks, and treatment options. In contrast, aboriginal peoples have a vision of healing that informs the “process of healing oneself, relationships with families” and “maintaining balance among their mental, physical, emotional and spiritual dimensions as human beings” (Ross, 1996:147). In Westernized health care, the concept of healing is typically used during experiences with illness or disruptions in health status. In contrast, some aboriginal cultural languages present healing as an aspect of health and everyday living. “Instead healing is seen as an everyday thing for everyone, something which, like sound nutrition, creates health. In short, the healing perspective must be built into the attitudes and process that shape every aspect of everyday” (Ross, 1996:147). In another example, Native Hawaiians comprehend healing through a system for maintaining harmonious relationships and resolving conflicts within the extended family; this system is called Ho’oponopono, which means setting to right. The Ho’oponopono process is a conceptual framework informed by several cultural concepts that become evident as the steps in the cultural ritual. These include problem identification, discussion, seeking forgiveness; release of conflicts and hurts; and the closing phase. Ho’oponopono is especially useful as a mental health intervention (e.g., for alcohol or substance abuse, domestic violence, anger) but also complements interventions for coping with diseases. “Then the ho’ola said Mom should confess to me and before God Jehovah. She did. She asked me to forgive her and I did. I wasn’t angry….And later Mom’s sickness left her. Of course, she still had diabetes, but the rest—being so confused and miserable—all that left her” (Shook, 1985:109). This broader humanistic perspective of healing is critical to comprehend aboriginal and Native Hawaiian health behaviors and to understand the importance of healing rituals for inclusion in treatment options and caring interventions during health and illness. These culturally based views of health suggest a trajectory for forming healing relationships in that they illuminate a fuller range of human experiences during health and illness. Understanding a greater diversity of healing relationships supports health literacy among different cultural groups. To this end, good health communications are a key pathway to building the continuous healing relationships that have been cited as an important goal for twenty-first century health-care system design (IOM, 2001). Poor communications and relationships translate into unfavorable outcomes, particularly delays in care seeking, refusal, lack of continuity of care, and disparities (IOM, 2003a).
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Health Literacy: A Prescription to End Confusion Patient Safety and Health-Care Quality4 The IOM report To Err Is Human (IOM, 2000b) clarifies the links between miscommunication and medical and health errors and adverse events. Lack of cultural competence and inattention to health literacy can both compromise patient safety through a number of mechanisms. For example, a variety of problems can result if culture and language are not taken into account including Failure to get accurate medical histories Failure to obtain informed consent Poor health knowledge and understanding of health conditions Poor treatment adherence Medication errors Lower utilization of preventive and other health-care services Poor patient satisfaction To the extent that low health literacy may be more prevalent among some racial and ethnic minority groups, these individuals may be at higher risk for adverse events stemming from poor communication. There is a need to understand the independent contributions of cultural competence and health literacy to patient safety, as well as the interactions between cultural competence and health literacy. Patients’ varied perspectives, values, beliefs, and behaviors regarding health and illness are consistently cited as integral to quality care in several IOM reports (2001, 2003a). To protect people from undue harm, eliminate errors and adverse events, prevent unnecessary human suffering, and be more accountable to quality and cost-effective care, cultural processes beckon attention, particularly to erode the culture of blame, reform teamwork, and redesign organizational dynamics within health-care systems. A principle of patient safety is to include patients in safety designs and the processes of care (IOM, 2000b). To do so, it is essential to understand cultural nuances of what patient safety means to different people and what beliefs, values, and actions inform people’s understanding of safe care come into play. The communication process plays a central role in this understanding. For example, a recent study in California of pediatric outpatient visits that used Spanish-language interpreters found an average of 31 interpretation errors per pediatric clinic visit (Flores et al., 2003), two-thirds of which had clinical consequences. The errors included errors in the dose and duration 4 The committee thanks Arlene Bierman, M.D., M.S., for her contributions to this section of the report.
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Health Literacy: A Prescription to End Confusion of prescribed drugs and missed information on patient allergies. Errors were most common with untrained interpreters. Amoxicillin for an ear infection was translated as one teaspoon three times a day in the ears, rather than by mouth. Steroid ointment for a baby’s face was translated as “rub on the body” and twice a day for three or four days was translated as “in four days.” In building a safer health-care system, strategies are needed to include culture and communication, inclusive of patients and families, as an integral component of interventions to reduce medical and health errors and adverse events like these. The interaction of health literacy, culture, language, and safety is not limited to patient safety. Worker safety is also influenced by health literacy. Workers must employ safeguards against hazardous materials and procedures. They are expected to read warning labels and right-to-know postings and take important precautionary measures. Yet, for some, the information may not accessible. The potential of low literacy and limited English proficiency to affect worker safety has been noted by health and safety educators and unions (Wallerstein, 1992). A recent National Academies workshop on Latino worker safety (NRC, 2003) noted that Spanish-speaking workers are four times more likely to be injured or killed on the job than English-speaking workers. The need to improve and properly translate signage, safety and use instructions, and training procedures is noted in that report (NRC, 2003). Strategies suggested to improve worker safety training include participatory education and popular education approaches (e.g., Wallerstein, 1992). Further research in this area is critical to the development of successful safety programs. I prepared all my material, cut all my pieces of Formica, and I opened the can and I didn’t really read the label. There was a red label on the can and even if I would have looked at it, I didn’t know what it was. I couldn’t even read it. Come to find out my lung was poisoned from that material I was using (Rudd and DeJong, 2000). Crossing the Quality Chasm: A New Health System for the 21st Century (IOM, 2001) proposed that health-care processes are to be redesigned according to 10 rules, 6 of which allude to cultural context and 5 of which relate to health literacy via information and communications. These rules are shown in Box 6-1. Twenty-first century health care will unravel the complexities that arise from the interplay of cultural processes and health literacy. Proposed changes include customizing care based on patient needs and values and accommodating differences in patient preferences and an-
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Health Literacy: A Prescription to End Confusion Investigators should involve patients (or subjects) in the research process to ensure that methods and instrumentation are valid and reliable and in a language easily understood. NIH should collaborate with appropriate federal agencies and institutional review boards to formulate the policies and criteria to ensure that appropriate consideration of literacy is an integral part of the approval of research involving human subjects. NIH should take literacy levels into account when considering informed consent issues in human subjects research. IRBs should meet existing standards related to the readability of informed consent documents. REFERENCES Aaronson NK, Visser-Pol E, Leenhouts GH, Muller MJ, van der Schot AC, van Dam FS, Keus RB, Koning CC, ten Bokkel Huinink WW, van Dongen JA, Dubbelman R. 1996. Telephone-based nursing intervention improves the effectiveness of the informed consent process in cancer clinical trials. Journal of Clinical Oncology. 14(3): 984–996. Agre P, McKee K, Gargon N, Kurtz RC. 1997. Patient satisfaction with an informed consent process. Cancer Practice. 5(3): 162–167. Albrecht TL, Ruckdeschel JC, Riddle DL, Blanchard CG, Penner LA, Coovert MD, Quinn G. 2003. Communication and consumer decision making about cancer clinical trials. Patient Education and Counseling. 50(1): 39–42. Allen CE. 2001. 2000 presidential address: Eliminating health disparities. American Journal of Public Health. 91(7): 1142–1143. Appelbaum PS. 1997. Rethinking the conduct of psychiatric research. Archives of General Psychiatry. 54(2): 117–120. Baker LM, Wilson FL. 1996. Consumer health materials recommended for public libraries: Too tough to read? Public Libraries. 35: 124–130. Baker DW, Parker RM, Williams MV, Pitkin K, Parikh NS, Coates W, Imara M. 1996. The health care experience of patients with low literacy. Archives of Family Medicine. 5(6): 329–334. Benitez O, Devaux D, Dausset J. 2002. Audiovisual documentation of oral consent: A new method of informed consent for illiterate populations. Lancet. 359(9315): 1406–1407. Bennett CL, Ferreira MR, Davis TC, Kaplan J, Weinberger M, Kuzel T, Seday MA, Sartor O. 1998. Relation between literacy, race, and stage of presentation among low-income patients with prostate cancer. Journal of Clinical Oncology. 16(9): 3101–3104. Benson JG, Forman WB. 2002. Comprehension of written health care information in an affluent geriatric retirement community: Use of the test of functional health literacy. Gerontology. 48(2): 93–97. Berland GK, Elliott MN, Morales LS, Algazy JI, Kravitz RL, Broder MS, Kanouse DE, Munoz JA, Puyol JA, Lara M, Watkins KE, Yang H, McGlynn EA. 2001. Health information on the Internet: Accessibility, quality, and readability in English and Spanish. Journal of the American Medical Association. 285(20): 2612–2621. Bertakis KD. 1977. The communication of information from physician to patient: A method for increasing patient retention and satisfaction. Journal of Family Practice. 5(2): 217–222.
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