Health Literacy A Prescription to End Confusion (2004) / Chapter Skim
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6 Health Systems
6 Health Systems
Pages 167-239
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G went to the emergency department, unable to walk because of intense pain and swelling of his entire left leg.
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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)
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Individuals and families must learn how to interact with employers, supplemental private insurance companies, federal and state government Research Employers Insurers Medical Device Education Groups Biotech Health Networks Accreditation Health Systems Hospitals Heart Community Centers Health Centers Consulting Patients/Enrolled Populations/Community Hospices Health Departments Technology Information Cancer Nursing Homes Centers Physician Groups Home Health Ambulatory vernment Go Venture Agencies Surgery Centers pose Multipur Local Capital Pharmaceutical Suppliers Associations Federal Government essional State Government Prof Foundations 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.
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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)
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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 · Patientprovider 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.
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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. Selfmanagement 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.
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, 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. PatientProvider Communication To Err Is Human reported that communication failure was the underlying cause of fully 10 percent of adverse drug events (IOM, 2000b)
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. 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)
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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)
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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.
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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)
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The health-care system should make available to patients and their families information that allows them to make informed deci sions when selecting a health plan, hospital, or clinical practice, or choosing among alternative treatments.
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are contextual qualities that fuel health disparities among particular groups and individuals in the United States. In this way, limited health literacy may be a precursor to and condition of health disparities.
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Preliminary evidence discussed in Chapter 3 suggests that these socioeconomic, cultural, and health literacy factors may be associated with higher costs in the long run, when expensive tertiary care and emergency department services become necessary. Limited local health resources and services can also impede access to care.
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Ironically, the result of poor communication and abbreviated or no patient education is higher use of emergency services, greater severity of illnesses, failure to follow instructions and use medications properly, and other "errors" which ultimately result in increased health-care costs. In this regard, Linzer and colleagues (2000)
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. Preliminary evidence on the cost implications of limited health literacy (presented in Chapter 3)
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If this is the case, the burden for persons with limited health literacy -- who already face the challenges outlined in this report-will surely increase significantly. Finding 6-2 Health literacy is fundamental to quality care, and relates to three of the six aims of quality improvement described in the IOM Quality Chasm Report: safety, patient-centered care, and equitable treatment.
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Two areas of health law and health care that are particularly central to health literacy are the standard of reasonable care and the informed consent process. It is around these areas that policy likely to affect common law could be developed.
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The concept of reasonable care can be applied to considerations of health literacy in the context of health care. The case of Incollingo v.
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Providers could also be responsible when their knowledge indicated that a lack of patient understanding would expose the patient to an unreasonable risk of harm. The Doctrine of Informed Consent The doctrine of informed consent, which obligates the physician to inform the patient of the risks, benefits, and alternatives to undergoing or 10282 A.2d at 216.
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Figure 6-2 shows the difference between the readability of informed consent forms and the readability required by the IRBs. Furthermore, while patients who sign consent documents often report their understanding of the research or treatment and satisfaction with the consent process, they may not fully understand the consent given (Horng et al., 2002; Pope et al., 2003; Vohra et al., 2003; Williams et al., 2003)
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ity and nature of informed consent information. But, it also relates to the multitude of psychosocial, ethical, and situational factors that may surround the clinical need for informed consent, such as hospitalization, emergency heart surgery, participation in Phase I cancer clinical trial, genetic testing, new vaccine for HIV, use of surgical placebos for Parkinson's disease, or separation of conjoined twins.
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A signature on a consent form is not adequate evidence that informed consent has been obtained. In providing informed consent, a research participant faces significant challenges, which are not adequately addressed through standard policy procedures (Triantafyllou et al., 2002)
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While no case directly addresses health literacy, cases exist in which theories of negligence, informed consent, and literacy have been brought to bear. A case that illustrates the potential issues that must be considered when examining literacy and informed consent is Hidding v.
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Finding 6-3 The readability levels of informed consent documents (for research and clinical practice) exceed the documented average reading levels of the majority of adults in the United States.
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Chapters 4 and 5 highlight some of the health literacy-related activities of federal agencies in the contexts of the educational system and culture and society, including those related to language issues and interpretation in health care. Office of the Secretary, Office of Disease Prevention and Health Promotion As the lead agency for the health literacy objective of Healthy People 2010 16Health Insurance Portability and Accountability Act of 1996.
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has been actively working to raise awareness about health literacy, to identify and coordinate health literacy activities across HHS, to convene HHS agencies to work collaboratively on health literacy, and to identify external partners. In 2000, ODPHP established a partnership with the National Center for Education Statistics of the U.S.
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The FDA also performs research on label comprehension and the actual use of labels by consumers, monitors the prescription information provided to consumers by the private sector, carries out consumer outreach, and monitors prescription drug advertising. An FDA regulation requires that over-the-counter medication labels be written: ".
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The evaluation showed that consumers looking for basic health information regarding disease and disease prevention are the largest segment of visitors to the CDC web site. The National Institutes of Health The National Institutes of Health (NIH)
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"Low-literacy" components were included in studies in cancer, childhood development and reading, arthritis, asthma, diabetes, HIV, mental health, Alzheimer's, health disparities, and studies in Spanish-speaking populations. In addition, "low literacy" was included in seven Requests for Applications since 2000, in studies such as Environmental Justice (sponsored by the National Institute of Environmental Health Sciences)
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The service programs utilize community health workers (also known as promotoras, outreach workers, or lay health workers) who are lay members of the community and work in association with the local health-care system, providing health education, interpreting health information, and assisting in obtaining access to services.
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They report that while no state is addressing health literacy in a comprehensive, multifaceted manner, individual agencies in a handful of states -- including Georgia, Illinois, Massachusetts, and Virginia -- have established programs, hired staff, or created task forces to respond to low health literacy and its effects on health-care delivery. A number of states are involved in activities that make it easier for someone with low health literacy to navigate public assistance programs -- such as simplifying enrollment materials and procedures -- or to increase health literacy by setting health education standards in both K-12 and adult literacy classes.
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These standards include assessing patient and family involvement in care and care decisions, the informed consent process, and hospital patient education tailored to patients' assessed needs, abilities, learning preferences, and readiness to learn. Compliance with these standards is assessed through document review, staff interviews, and review of patient complaints.
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Language in medicaid managed care contracts, valid as of 2001, shows that although a number of states' contracts do address some literacy- and lan guage-related issues, there are no specific requirements related to health literacy in any state, and many states do not address these issues at all or do so inconsis tently. Among the 42 states with risk contracts that are captured in the Medicaid Managed Care database, 33 states and the District of Columbia included in their Medicaid managed care contracts some type of requirement pertaining to the provision of easily understood information.
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The Medicaid managed care contracts of 12 states do not include a requirement for services to be provided to persons whose primary language is not English. Although 25 states include a requirement that Medicaid managed care providers must insure cultural competence, only 10 of these states explicitly define what is meant by cultural competence.
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There are a few examples of interventions specifically designed to incorporate health literacy into health systems, and some information is available from the literature regarding interventions in other related fields such as health communication and health education. However, scientific investigation of interventions to minimize the impact of limited health literacy and promote the development of health literacy skills in the context of the health-care system is in its infancy.
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to instruct and inform 39% 40% 19% 0 3% Test for reading levels in clients 25% 20 (21%)
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For heuristic purposes, we have structured the following discussion around six categories of interventions under which most efforts appear to fall. These categories are as follows: · Provision of Simplified/More Attractive Written Materials · Technology-Based Communication Techniques · Personal Communication and Education · Combined Approaches · Tailored Approaches · Partnerships In addition, it is important to note that training of educators and providers is one of the most important areas of current activity in the health literacy field.
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Davis and colleagues (1998b) found that those with the lowest literacy levels, after receiving a simplified and more appealing brochure, did not show a similar increase in comprehension similar to those with higher literacy skills.
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206 HEALTH LITERACY TABLE 6-3 Samples of Published Studies of Interventions in Health-Care Settings Citation Setting Study Design Population Provision of Simplified/More Attractive Written Materials Davis et al., Private and Nonrandomized n = 183 1998c university trial 53 patients with cancer or oncology another medical clinics, and a condition and 130 low-income apparently healthy housing participants complex Davis et al., Three pediatric Randomized n = 610 1998b care facilities controlled trial Parents bringing children in Louisiana to pediatric care facility Eaton and Outpatient clinic Randomized n = 108 Holloway, at Veterans controlled trial Outpatients who could 1980 Administration read English, see normal hospital in size type, and were not Minneapolis, receiving warfarin MN therapy Hussey, 1994 Geriatric Controlled trial n = 80 outpatient (nonrandomized) Patients of clinic 65 years clinic in a or older with at least county one chronic health hospital in the problem, and either of southwestern low socioeconomic status U.S.
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Patient drug information guide Comprehension was greater for 5th-grade-level about warfarin written at either information compared to 10th-grade-level 5th- or 10th-grade reading levels. information (p < 0.001)
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208 HEALTH LITERACY TABLE 6-3 Continued Citation Setting Study Design Population Jacobson et al., Ambulatory Randomized n = 433 1999 clinic at Grady controlled trial Primary care patients that Memorial had not previously been Hospital, vaccinated, and had one Atlanta, GA of the following: diabetes, heart failure, other chronic illness, 65 years or older Michielutte A private family Randomized trial n = 217 et al., 1992 practice and Women age 18 or older three public Women who reported no health clinics ability to read or who -- OB/GYN, reported "serious illness" family were excluded planning, and sexually transmitted diseases Powell et al., Pediatric clinic at Prospective cohort n = 66 families 2000 Northwestern Parents of children 6 years University or younger who obtained Medical primary care from the Center, clinic Chicago, IL Technology-Based Communication Techniques Kim et al., Urology clinics Uncontrolled trial n = 30 2001 in two VA 100% male hospitals in Chicago Meade et al., Cancer clinic Randomized trial n = 1100 1994
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When results were analyzed illustrated brochure, 105 received by reading level, the illustrated brochure was nonillustrated version. better comprehended by lower literacy patients.
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University Patients at sleep clinic 18 Health Sciences years or older Center If younger than 18, caregiver participated Pepe and Urban health Uncontrolled n = 20 Chodzko-Zajko, department in trial Low-income, inner-city 1997 the Midwest adults aged 6080 Wydra, 2001 Four Randomized trial 86 intervention patients, comprehensive 88 controls cancer centers Patients over age 18 who were receiving outpatient cancer treatment Those with less than 5th grade reading level or brain or visual dysfunction were excluded Personal Communication and Education Mulrow et al., Diabetes clinic in Randomized trial n = 120 1987 London Patients with diabetes who were overweight and not taking insulin Patients with a history of diabetic ketoacidosis, diabetes onset prior to age 29, or over the age of 70 where excluded. Paasche-Orlow, Two urban Uncontrolled n = 80 2003 medical Adults hospitalized for centers asthma exacerbation
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One-on-one oral and written After instruction, about 1 in 3 high-risk adults intervention at discharge covering required additional instruction about medication schedule and metered medication regimen. Higher acute care dose inhaler technique utilization, not low health literacy, predicted the need for additional instruction.
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212 HEALTH LITERACY TABLE 6-3 Continued Citation Setting Study Design Population Rothman et al., University-based Randomized trial n = 206 2003 general Patients with diabetes and internal poor glucose control medicine practice Schillinger Two primary Uncontrolled n = 74 et al., 2003b care clinics in trial Patients with type 2 San Francisco diabetes mellitus Combined Approaches Davis et al., Public hospital in Randomized n = 445 1998a Shreveport, LA controlled trial Women 40 years old or over, attending ambulatory or eye clinic, and no mammogram in the past year Tailored Approaches Hayes, 1998 Emergency Randomized trial n = 60 departments, Elderly emergency room Midwestern patients rural area
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A measure of the extent to which Higher health literacy and physician application physicians assess patient recall of interactive communication strategy were and comprehension in a public associated with good glycemic control (p < hospital setting.
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For example, while simplification of informed consent information resulted in less intimidation (Davis et al., 1998c) and lower consent anxiety and higher satisfaction (Coyne et al., 2003)
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The National Cancer Institute (1998) has prepared a set of templates and recommendations for the development of easy-to-understand informed consent documents for cancer clinical trials that are available online and were distributed to IRBs, hospitals, cancer centers, patient groups, and researchers.
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Revised Simplified Consent Document Introduction You are being asked to take part in a study that looks at ways to help pregnant women stop smoking. We want to know if booklets can help you to stop smoking.
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In addition, evaluation of interventions to improve the informed consent process provide support for technology-based communication techniques such as computerized decision aids (Rostom et al., 2002) , videotape plus physician communication (Agre et al., 1997)
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· The Improving Diabetes Efforts across Language and Literacy project, devel oped at San Francisco General Hospital, intends to implement and evaluate disease management programs tailored to the language and literacy levels of patients with diabetes. The project will test the feasibility and acceptability of health communication interventions in a public delivery system and compare the effects of technologically oriented vs.
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and are lay members of the community who work in association with the local health-care system to provide health education, interpret health information, and assist in obtaining access to services. HRSA's Bureau of Primary Health Care plays a large role in training and providing support to community health workers in a number of settings, including farm worker promotoras at its Migrant Health Centers.
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Results of this randomized controlled trial showed that this combined approach intervention was the only significant predictor of increased mammography usage at 6 months after controlling for literacy,
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Research on the informed consent process that has looked at the experience from the perspective of the patient has found that this can aid in untangling the complex dynamics associated with the process (Albrecht et al., 2003; Cox, 2002; Ruckdeschel et al., 1996)
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grounded within the sociopolitical and environmental structures of the community and can better reflect the everyday lives of people. Furthermore, health information that is developed from an interdisciplinary approach is more likely to be effective, adopted, and successfully diffused within individual communities (Allen, 2001; Manderson, 1999; Watters, 2003)
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However, such approaches may not meet the needs of those with limited health literacy. Investigators from the Department of Obstetrics and Gynecology at the University of CaliforniaSan Francisco have developed and evaluated a computerized, prenatal-testing, decision-assisting tool ("PT
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Furthermore, women viewing PT Tool differed in their testing inclination toward and utilization of prenatal testing. That these effects were particularly strong in college-educated women, raises questions about whether the tool would be effective for individuals with limited health literacy.
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. Healthy People 2010, as previously discussed, includes an objective on health literacy which is "to improve the health literacy of persons with marginal or inadequate literacy skills." The Office of the Secretary, ODPHP is the lead agency for this objective, and has been working to identify and coordinate health literacy activities across HHS, to convene HHS agencies to work collaboratively on health literacy, and to identify external partners.
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This type of approach to the problem of limited health literacy is not sufficient to ensure continued interest and improvement in health literacy interventions. The next decade must see a significant increase in the number of programs and approaches that are developed and evaluated, as well as more systematic approaches and partnerships within and across both the public and private sectors.
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Unfortunately, there is not one solution that fits everyone." · "Information is only useful if it is appropriate for the intended audience." · "Sending a message is not enough, you need to be sure that your message has been conveyed properly." · "To be effective health communication needs to involve the intended audi ence in the development of information/education products." · "Language and cultural competence and varied strategies and methods ap propriate to the identified audience are key to creating useful materials."
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Finding 6-3 The readability levels of informed consent documents (for research and clinical practice) exceed the documented average reading levels of the major ity of adults in the United States.
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1996. Tele phone-based nursing intervention improves the effectiveness of the informed consent process in cancer clinical trials.
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2002. Patient education and informed consent in head and neck surgery.
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1994. Are informed consent forms that describe clinical oncology research protocols readable by most patients and their families?
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1995. Informed consent forms for clinical and research imaging procedures: How much do patients understand?
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1991. Level of reading difficulty in educational pamphlets and informed consent documents for cancer patients.
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1992. Consent forms: How to determine and improve their read ability.
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Readability of informed consent forms used in research. Ethics and Behavior.
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1992. Evaluating the readability of informed consent forms used in contraceptive clinical trials.
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2003. Perceptions of informed consent in the care of elderly people in five European countries.
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1990. Readability of pediatric biomedical research informed consent forms.
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1990. Informed consent documents: increasing compre hension by reducing reading level.
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