4

The Role of the University in Improving States’ Health Literacy

HOW THE UNIVERSITY CAN ADVANCE STATE HEALTH LITERACY

Dean Schillinger, M.D. University of California, San Francisco

Schillinger reviewed the seven goals of the 2010 Department of Health and Human Services (HHS) National Action Plan to Improve Health Literacy. He then described examples of community-engaged research that improve the health literacy of the state’s population at the University of California, San Francisco (UCSF) and at other health sciences campuses in California. The UC campuses are a resource for training the future healthcare workforce, for providing clinical care, innovating care, advancing public policy, and conducting impactful research.

The seven goals of the National Action Plan to Improve Health Literacy are to (HHS, 2010)

  1. develop and disseminate health and safety information that is accurate, accessible, and actionable;
  2. promote changes in the healthcare system that improve health information, communication, informed decision making, and access to health services;
  3. incorporate accurate, standards-based, and developmentally appropriate health and science information and curricula in child care and education through the university level;


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4 The Role of the University in Improving States’ Health Literacy HOW THE UNIVERSITY CAN ADVANCE STATE HEALTH LITERACY Dean Schillinger, M.D. University of California, San Francisco Schillinger reviewed the seven goals of the 2010 Department of Health and Human Services (HHS) National Action Plan to Improve Health Lit - eracy. He then described examples of community-engaged research that improve the health literacy of the state’s population at the University of California, San Francisco (UCSF) and at other health sciences campuses in California. The UC campuses are a resource for training the future health- care workforce, for providing clinical care, innovating care, advancing public policy, and conducting impactful research. The seven goals of the National Action Plan to Improve Health Lit- eracy are to (HHS, 2010) 1. develop and disseminate health and safety information that is accurate, accessible, and actionable; 2. promote changes in the healthcare system that improve health information, communication, informed decision making, and access to health services; 3. incorporate accurate, standards-based, and developmentally appropriate health and science information and curricula in child care and education through the university level; 33

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34 IMPROVING HEALTH LITERACY WITHIN A STATE 4. support and expand local efforts to provide adult education, Eng- lish language instruction, and culturally and linguistically appro - priate health information services in the community; 5. build partnerships, develop guidance, and change policies; 6. increase basic research and the development, implementation, and evaluation of practices and interventions to improve health lit - eracy; and 7. increase the dissemination and use of evidence-based health lit- eracy practices and interventions. Research on health literacy can be viewed as translational research. The National Institutes of Health (NIH) has in the last few years revis - ited its mission and has focused on developing expertise and products in translational research, moving from bench to bedside, and then from bedside to community. Over the past half century NIH primarily funded Translational 1 (T-1) research, which is research on “the transfer of new understandings of disease mechanisms gained in the laboratory into the development of new methods for diagnosis, therapy, and prevention and their first testing in humans” (Sung et al., 2003). Translational 2 (T-2) research involves bedside-to-community research, as does some Transi - tional 3 (T-3) research, which is defined as “the translation of results from clinical studies into everyday clinical practice and health decision mak - ing” (Sung et al., 2003). Much effort has been put into T-1 discovery. While the gap in funding between T-1 and T-2 research is immense, increased attention is now being paid to how T-1 discoveries can be incorporated into clinical and public health practice to promote behavior change and reduce health disparities. Unfortunately, the results of bench research do not spontaneously diffuse throughout the practice community. For example, the findings from randomized controlled trials may not affect community practices for years to decades. The Clinical Translational Sci - ence Awards from the NIH are accelerating the pace of discovery from the bench all the way to population health, Schillinger said. The UCSF received an NIH Translational Sciences Award and estab- lished the Clinical and Translational Science Institute (CTSI). CTSI chal - lenges, encourages, and supports UCSF researchers to take the research capital at UCSF—the great wealth of clinical research discoveries, knowl - edge, and know-how—and link it with community partners’ expertise and priorities to effectively translate research into interventions that can be scaled to make a measurable impact on the health of the local com - munity and eliminate disparities. CTSI has developed four working prin - ciples. These are as follows:

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35 THE ROLE OF THE UNIVERSITY 1. Take a population health perspective. 2. Invest in community partnerships. 3. Require transdisciplinary science. 4. Translation is itself a subject matter for research. While there are outstanding schools of medicine, nursing, pharmacy, and dentistry at UCSF, there is no school of communication or a school of education, thereby hampering efforts to involve those disciplines in research, Schillinger said. There are, however, pockets of expertise in these areas, and collaboration with investigators at the University of California, Berkeley, for example, help fill these transdisciplinary gaps. A transdisciplinary research approach would ideally involve such fields as epidemiology, biomedical science and technology, behavioral science, psychology, communication and information technology, politi - cal science, sociology, cognitive science, social marketing, and economics. These fields are integral to understanding the ecological model for health. This model assumes that many factors affect individual health and that individuals can be considered to be striving for health and the mainte - nance of health in the context of multiple environmental influences from the family all the way up to local and national political decisions. CTSI is committed to the notion that translation is itself a subject mat- ter for research. There is a science to dissemination and a science to imple- mentation. Schillinger pointed out that in such research, an emphasis on external validity sometimes comes at the expense of internal validity. The methodology underpinning the controlled clinical trial often dictates that a narrowly defined set of people be included in the trial. Many times individuals are excluded from participation if they are not within certain age ranges or have comorbid health conditions. The clinical trial may be internally valid insofar as it advances our understanding of important questions for those groups represented in the trial, but it may have little relevance to the real-world patients in real-world settings. Schillinger suggested that a balance must be struck; that is, the representativeness of study samples, the study settings, and the study interventions as they relate to the real world all need to be attended to, while also trying to maximize internal validity. Schillinger cited the work of Lawrence Green, who through his work at the Centers for Disease Control and Prevention (CDC) and the National Cancer Institute, has eloquently and persistently advocated for the need not only to put research into practice, but to also “put practice back into research.” This principle has been at the heart of the primary care practice-based research networks that have engaged community settings in framing research questions, designing interventions that are feasible, and testing them in the real world. This approach, if expanded beyond

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36 IMPROVING HEALTH LITERACY WITHIN A STATE primary care research, would represent a sea change for research institu- tions such as UCSF. UCSF has used this community-based approach, for example, in researching the role of chronic hepatitis B on the development of hepa- tocellular cancer. Chronic hepatitis B-related cancer is a leading cause of cancer deaths among Asian and Pacific Islanders in the San Francisco Bay Area. Fundamental clinical and epidemiologic research has been con- ducted on hepatocellular carcinoma, surveillance, screening, and antiviral treatments, but high rates of infection and cancer death have persisted. With the leadership of Dr. Tung Nguyen, CTSI has linked researchers and clinicians with public health advocates and community members to try to address these epidemics. To further public awareness, social marketing campaigns among the Asian and Pacific Islander community in the San Francisco Bay Area have emerged to promote testing, vaccination, and treatment. Schillinger provided another example of research at UCSF related to health literacy, health promotion, and health communication, research that is in response to the first goal of the National Action Plan to Improve Health Literacy. With support from the Agency for Healthcare Research and Quality (AHRQ), medication summary guides are being developed for vulnerable populations with rheumatoid arthritis (RA) (Edward Yelin is the principal investigator [PI]). In describing the context for the study, Schillinger discussed how the treatment of RA has advanced greatly over the last decade. A number of new biologic therapies are remarkably effec - tive if prescribed to the patient early in the disease course. These medica - tions can change the trajectory of the disease such that people are much less likely to be disabled from RA than they were 15 years ago. Yet the medications are very costly and have to be taken exactly as prescribed. There can be serious side effects if too much medication is taken, there is a narrow therapeutic window in terms of dosage, and monitoring for adverse events is critical. To be effective, patients must be extremely involved in their medication management and care. Descriptive studies have shown that there are significant sociodemographic disparities in the degree to which patients receive these highly effective treatments. The investigators have hypothesized and shown that health communication is one of the contributors to these disparities. Box 4-1 presents the study objectives, and Box 4-2 lists the anticipated outcomes of the study. Another example of UCSF research is the Bay Area Breast Cancer and the Environment Research Program (Robert Hiatt, PI) which involves basic, applied, and community-based approaches. There are three core projects:

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37 THE ROLE OF THE UNIVERSITY 1. Environmental Influences and the Windows of Susceptibility in Breast Cancer Risk Project—NCI funded, a highly technical project that includes T-1 research 2. Early Environmental Exposures and Human Puberty Project, con- ducted in collaboration with investigators at Kaiser Permanente 3. Community Outreach and Translation Core, in collaboration with Zero Breast Cancer, a community-based advocacy organization The context for the program is the observation of a trend that puberty is occurring at younger ages among girls. Because early onset of puberty is a risk factor for breast cancer, there is interest in whether early exposure to certain environmental chemicals, obesity, genetics, and other factors raise the risk of early puberty. There are tremendous challenges associated with communicating to the public about findings related to environmental tox- ins, their association with early puberty, and their potential relationship to breast cancer risk. There is need for communication across disciplines, among biologists, physical scientists, biochemists, community members, BOX 4-1 Study Objectives • ssess the knowledge of RA therapies among vulnerable populations and the A utility of current RA summary guides. • evelop print and video adaptations of guides and a decision aid tool. D • onduct a pilot trial to test adapted guides and the decision aid, and evaluate C the impact of tools on outcomes. SOURCE: Schillinger, 2010. BOX 4-2 Anticipated Study Outcomes • low literacy, plain language, medication summary guide in English, Spanish, A and Chinese for vulnerable populations with RA. • decision aid tool derived from the adapted medication summary guide to im- A prove patient-physician communication, reduce decisional conflict, and improve adherence and outcomes in RA patients with limited health literacy. SOURCE: Schillinger, 2010.

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38 IMPROVING HEALTH LITERACY WITHIN A STATE and advocates. The program has created opportunities and products (The Breast Biologues, bayrea.bcerc.org/cotcpubs) that communicate findings to these various constituencies. It is a model that can be replicated for a number of diseases and conditions. In response to the second goal of the National Action Plan to Improve Health Literacy, Schillinger described an AHRQ-funded project to provide automated telephone self-management (ATSM) support for patients with diabetes (Dean Schillinger, PI). The project involves the use of a simple technology, automated telephone support, to provide patients with a basic understanding of diabetes and access to self-management tools and support. It is an interactive health technology relying on touchtone telephones. The service places a call to patients weekly, and recorded mes- sages are in the patient’s native language: English, Spanish, or Chinese. If the patient reports an episode of hypoglycemia or low blood sugar, he or she will get a call back from a nurse. If a patient reports that everything is going well, that he or she is not smoking, that he or she is walking, then there is no callback. Patients receive supportive messages, and they do not receive another call until the following week. There is a hierarchical logic used to deliver self-management support. In addition to the telephone intervention, patients attend a weekly surveillance and education session over a 9-month period. A randomized trial examining usual care provided to diabetic patients and the ATSM intervention was conducted in primary care practices using very broad inclusion criteria (Handley et al., 2008; Sarkar et al., 2008; Schillinger et al., 2009). Schillinger pointed out that usual care at UCSF is fairly robust. In general, patients are seen by a primary care physi- cian, diabetes educators, nutritionists, and when indicated, by specialists (e.g., endocrinologists). When the automated telephone self-management intervention was compared to the adjunctive group medical visits and to usual care in a three-arm comparative effectiveness trial, the level of engagement was much higher for ATSM than for the group medical visits. Engagement was especially high for those with communication barriers of limited literacy or English proficiency. The ATSM group also had the most significant gains in their diabetes self-management behavior at 1 year compared to where they were at a baseline. Quality-of-life outcomes were also enhanced by the automated phone system. For example, days spent in bed sick from diabetes decreased from 3.8 days per month to 1.7 days per month, about a 50 percent reduction in days spent in bed for those who received the automated telephone intervention. The results suggest that this is a promising low-cost technology to redesign the healthcare system and provide an adjunct to care. The study also demonstrated that the intervention was cost-effective. There has been great interest in the product. Medicaid Managed Care

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39 THE ROLE OF THE UNIVERSITY Plans have expressed interest, with a large majority of Medicaid health plans in California reporting an interest in employing ATSM-like technol - ogies (Goldman et al., 2007). These plans enroll large numbers of diabetics who do not speak English; and if they do, they have limited literacy and numeracy skills. One health plan in San Francisco, with a high number of non-English speaking patients, wanted to adapt and adopt the program for their members with diabetes. Working with health plans has been very productive. Health plans have skills and resources that are not available in research settings. Their marketing and outreach departments, for example, can identify new enrollees as a Spanish-speaker, Chinese-speaker, or English-speaker, and send an enrollment card for the diabetes program. The program is a cov- ered benefit. The health plan program has been successful in engaging their members with diabetes. On average, 60 percent of the members are picking up and answering these automated calls on a weekly basis. This rate does not appear to diminish over time. The Chinese language speak - ers are the most engaged, followed by the Spanish speakers, and then the English speakers. This has been a wonderful example of a community- engaged research project, building on a prior RCT. Another CTSI intervention implemented in both academic and com- munity settings informs and involves people with cancer in their treatment decisions (Jeff Belkora, PI). Breast cancer patients are sent decision aids before their visits (i.e., videos and booklets). During the visit a number of communication aids and techniques are used, including question list- ing, audio recording, and note taking. After their medical visits, women debrief with a “breast buddy,” and decide on a treatment plan. The goal is to integrate evidence-based decision and communication aids into the high-volume academic Breast Care Center at UCSF. The intervention is also being implemented in a rural community setting, Mendocino County, which is about a 4-hour drive north of San Francisco. Patients reported that the recordings and notes were invaluable in recalling the conversation with the doctor and helpful in clarifying options, understanding the consequences of available choices, and making deci- sions. Results indicate that the intervention is associated with improved patient knowledge, increased question asking, and improved recall of information. The communication and decision aids have also shifted the time, place, and people who are involved in information exchange. The healthcare experience improved not only for patients, but also for clini- cians. Physicians report that the patients coming in with decision aids are more prepared and ask questions that make good use of the available time. In support of the fourth goal of the National Action Plan to Improve Health Literacy, UCSF, under the leadership of Ricardo Munoz, is attempt- ing to improve linguistically appropriate mental health services by lever-

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40 IMPROVING HEALTH LITERACY WITHIN A STATE aging the Internet and mobile technology. Munoz is director of the Latino Mental Health Research Program at San Francisco General Hospital. He is developing and testing automated self-help Internet interventions and is particularly interested in depression, depression prevention, cogni- tive behavioral therapy, and recently, smoking cessation. Munoz believes that current health care relies too heavily on consumable interventions. Medications can only be used once. Time spent in a face-to-face interven- tion can never be used again. In contrast, the Internet can be used more effectively with a greater reach and at marginal cost. The Internet-based smoking-cessation program has been accessed by individuals across the country and internationally. There is a Spanish-language website, and a site is being developed for Chinese speakers. Munoz is tailoring the web - site content to meet varying levels of literacy. Schillinger described a multisite heart failure study (Michael Pignone, University of North Carolina, PI, with UCSF, UCLA, and Northwestern University collaborators). In general, one in five Medicare patients who are hospitalized, are hospitalized with heart failure. Inves - tigators compared a single educational session to a tiered educational approach for heart failure patients in reducing heart failure admissions. The inpatient quality measure used by the Center for Medicare and Medicaid Services (CMS) calls for patients to be given written materials regarding such factors as diet, weight monitoring, and medication man - agement. Over 600 patients were enrolled in the trial, including 40 per- cent who had limited health literacy. The single-session intervention was compared to a goal-directed, layered teaching program using the Teach to Goal approach. The teach-back method is used to ensure that patients understand the core elements of self-management for heart failure, such as the need to weigh oneself daily. Those who were randomized to the Teach to Goal arm had very robust short-term improvements in self- efficacy, heart failure self-care, and heart failure-related quality of life. The gains in quality of life were clinically significant. One-year outcomes look very promising, especially for those with limited health literacy. Freedman and others have advanced the concept of “public health literacy” (Freedman, 2009). They define it as the degree to which indi- viduals in groups can obtain, process, understand, evaluate, and act upon information needed to make public health decisions that benefit the com - munity. In the case of secondhand smoke, the target population was the public, and the purpose of the educational campaign has been to improve the health of the public. Public health literacy involves engaging stake - holders in public health efforts to address the underlying determinants of health. It also involves many constructs, including some conceptual foundations about the influence of environment on individual health, critical skills, and a civic orientation.

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41 THE ROLE OF THE UNIVERSITY Schillinger pointed out that the public’s awareness of the dangers of secondhand smoke is an example of a health literacy success story. The target audience for knowledge about secondhand smoke was the general public. The recognition that one person’s smoking behavior is not only bad for that person, but also bad for others in the community was a major accomplishment. According to UCSF researcher Stan Glantz, an estimated 600,000 people a year have been saved as a result of research related to secondhand smoke. Kirsten Bibbins-Domingo (UCSF Center for Vulnerable Populations, San Francisco General Hospital) studied the overuse of salt and sugar in the diet. It is well established that lowering salt lowers blood pressure. The association between daily salt intake and systolic and diastolic blood pressure is fairly linear. Individuals who consume 8 grams of salt a day have much higher systolic blood pressures than those who take in four, for example. Using a sophisticated modeling technique, Bibbins-Domingo showed that everyone’s blood pressure is lowered with lower salt, but the elderly, those who have hypertension, and African-Americans have a greater reduction in blood pressure with lower amounts of salt. Bibbins-Domingo modeled what would happen to the health of Americans if sodium in processed foods were reduced by 20 to 30 per- cent, a very modest reduction (Bibbins-Domingo et al., 2010). She found that mortality would fall across all age groups, with the greatest mortality benefit among the young and African Americans. With a reduction in salt intake there would be between a 5 and 12 percent reduction in mortality from cardiovascular disease, stroke, and hypertension. This reduction is equivalent to the public health gains achieved if half of American smok - ers stopped smoking. This intervention was triple the effect of a 5 percent weight loss among those who were obese. It was 10 times more effec - tive than putting everybody on cholesterol-lowering medications (e.g., statins), and was as effective as having everyone with hypertension on optimal blood pressure treatment. The World Health Organization estimates it costs a dollar per person to reduce salt through regulatory means, public campaigns, and monitor- ing. The cost savings are $7 saved for every dollar spent. Schillinger concluded that salt in foods, and consumption of sugar- sweetened beverages (that is also promoted by high-salt food, which drives the thirst response) are major contributors to the rise in hyperten - sion, diabetes, and obesity in the United States. Public health efforts are needed to change these dangerous trends. Health literacy and interven- tions and new policies will be key to informing and activating the pub- lic to bring about change among individuals, communities, and policy makers, Schillinger said.

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42 IMPROVING HEALTH LITERACY WITHIN A STATE WORKFORCE TRAINING AND PREPAREDNESS Carol Mangione, M.D., M.S.P.H. University of California, Los Angeles As mentioned earlier, health literacy is “the degree to which indi- viduals have the capacity to obtain, process, and understand basic health information and services” (Ratzan and Parker, 2000). Only 52 percent of patients understand what health providers tell them or give them to read (IOM, 2004). According to the 2003 National Assessment of Adult Literacy (NAAL), almost 45 percent of the U.S. population (or 93 million Americans) have only basic or below basic literacy skills. The NAAL cat - egorizes “Below Basic” as the ability to perform only the most simple and concrete literacy skills such as signing a form, adding amounts on a bank deposit slip, and searching in a simple text to find out whether a patient is allowed to drink liquids before a medical test. The NAAL only measures adult literacy, that is, the ability to read. Health literacy is much broader, involving the ability to read, understand, and act upon health information. Numeracy is also an important compo - nent of health literacy. The estimates from the NAAL survey are low when the complexity that the health setting confers is taken into consideration. In 2003 the California Health Literacy Initiative found that 23 percent of California residents lacked basic prose literacy levels. Nearly 70 percent of the immigrants who have resided in California for 10 or fewer years are functionally illiterate. To be functionally illiterate means that you are unable to read the label on a medicine bottle, complete a medical his- tory form, or find an intersection on a street map (http://www.cahealth literacy.org). Statewide estimates of health literacy are not available, but they are likely to be higher than low literacy levels overall. Being health literate has become a challenge in light of the increasing complexity of medical care and the healthcare system, Mangione said. Written patient materials that are often lengthy and delivered quickly during stressful medical encounters are being provided to patients to help them understand verbal instructions. Even the most well-educated and experienced individuals can have difficulties navigating the healthcare system. There is a strong association between low health literacy and pro- cesses and outcomes of care. Having low health literacy is associated with delays in diagnosis (Bennet et al., 1998), in poor disease management skills (Williams et al., 1995), and in higher healthcare costs (Weiss et al., 1994). When physicians were asked, as part of a survey conducted by the California Health Literacy Initiative, whether low literate adults get lower quality of care, 94 percent of physicians said that they thought that was

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43 THE ROLE OF THE UNIVERSITY the case (http://www.cahealthliteracy.org). Most (89 percent) physicians, when asked whether they had received any formal training in health literacy, said no. Herein lies the educational challenge, Mangione said. The survey results identified the need to better understand necessary components of medical professional training and effective methods of instruction. While there are some techniques that are being used by some medical providers, for example, the teach-back method and reduction in the use of medical jargon, Mangione said that more techniques should be tested and applied. The survey results suggest that many physicians have received the message that health literacy, as an issue, exists. This message now needs to be spread to all allied health professionals, including phar- macists, nurses, nurse practitioners, and medical assistants. It is probable that the nursing profession is ahead of physicians on this issue because of their proximity to patients and the amount of time they spend decod - ing the complex instructions that physicians tend to leave patients with. There are many challenges when considering the health workforce training needs. First, most of the literature on health literacy has focused on patient factors that put people at greatest risk, whether it is not speak - ing English as a first language, being an older adult, or not having fin - ished high school. There are relatively few research findings relevant to the workforce of people who care for patients. When surveyed, health professionals tend to overestimate patients’ health literacy. Health professionals do not routinely use many of the best practices for effective communication with patients of low health literacy. The evidence base for understanding whether using these techniques actually improves care is limited to a small number of studies. The American Medical Association (AMA) Foundation has contrib- uted to understanding educational methods appropriate for health profes- sionals. The AMA has recommended five communication techniques for patients with low literacy (Schwartzberg et al., 2007): 1. Understandable language 2. The teach-back method 3. Patient-friendly materials 4. Helping patients understand 5. Patient-friendly environment As part of a study of the routine use of communication techniques by physicians, pharmacists, and nurses, investigators from the AMA asked attendees of a health literacy conference about their interactions with patients. Nurses were significantly more likely than physicians and phar- macists to use the teach-back method (60.5 percent, 35.4 percent, and 27.7 percent, respectively). Roughly two-thirds of all the health professionals

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44 IMPROVING HEALTH LITERACY WITHIN A STATE said that they spoke more slowly, and almost all used simple language and avoided jargon. The 2004 IOM report Health Literacy: A Prescription to End Confusion concluded that “Health professionals and staff have limited education, training, continuing education, and practice opportunities to develop skills for improving health literacy” and recommended that “Profes- sional schools and professional continuing education programs in health and related fields, including medicine, dentistry, pharmacy, social work, anthropology, nursing, public health, and journalism, should incorporate health literacy into their curricula and areas of competence.” The Accreditation Council for Graduate Medical Education (ACGME), the body responsible for the accreditation of post-M.D. medical training programs, has stated that “Residents must demonstrate interpersonal and communication skills that result in the effective exchange of information and collaboration with patients, their families, and health professionals” (ACGME, 2007). Mangione questioned the adequacy of training available to prepare residents to meet this requirement. She also questioned the ability of current medical school faculty to train residents given their own lack of training in this area. Numerous agencies, including IOM, have called for improvements in training health professionals in health literacy; however, core competen - cies for health literacy training have not yet been identified. Developing training materials is difficult without first identifying core competencies. Cliff Coleman and colleagues at Oregon Health and Sciences University have a project under way that will define the necessary health literacy– related knowledge, skills, attitudes, and practices for health professionals. The teach-back technique was identified in 2001 by AHRQ as one of 11 top patient safety practices. This approach asks patients to recall and restate what they have heard during the informed consent process (AHRQ, 2001). The teach-back technique works as part of an interactive communication loop. When a clinician discusses a new concept or pro - vides health information, the clinician assesses the patient’s recall and comprehension and clarifies and tailors the information according to what the patient has recalled. According to Mangione, this technique has not been widely taught in California. There are limited data available for the status of health literacy train- ing, but according to anecdotal reports, health professionals have limited awareness and skills and literacy training is inadequate. Many organiza - tions have recommended that training and curricula be improved, but although curricula is proliferating, and 70 percent of medical schools require some health literacy training, the content and effectiveness of the training are unknown. Mangione reported on a nonscientific, informal survey of health lit -

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45 THE ROLE OF THE UNIVERSITY eracy curriculum for health professionals being trained within the UC system. She sent an e-mail to the five UC School of Medicine deans of education, and the deans of the pharmacy school, two nursing schools, and two schools of public health. She asked for descriptions of their cur- riculum to prepare health professionals to work with patients with low health literacy. Up to five reminders were sent to encourage response. Replies were received from all but one of her contacts, and the informa- tion is displayed in Table 4-1. Mangione found that when programs had some curriculum content in the area of health literacy the content was often embedded in other coursework and respondents were not able to give precise estimates of the time committed to health literacy or its components. In medical schools, for example, doctoring courses tend to be where doctor-patient communi- cation is taught. The health communication part of the doctoring courses is a logical place to integrate health literacy training. There is a long tradition of formal training in health communication for physicians, nurses, and pharmacists. However, the structure of this training in health professional schools has traditionally assumed a high TABLE 4-1 Results of Informal Survey of University of California Health Professional Schools’ Health Literacy Curriculum Campus Response UC Berkeley– No specific curriculum on health literacy; this topic Public Health is included in various courses. Sessions are taught for Joint Medical Program students (Berkeley and UCSF) and for the public health students in Public Health Interventions class as well as in sessions for other professors’ courses. UC Davis–Medicine Health literacy is embedded in the 3-year Doctoring course. UC Davis–Nursing New school—entering class is Masters and Ph.D. level. No specific curricula developed yet. UC Irvine–Medicine Through the Reynolds Foundation grant, several sessions in the curriculum touch on health literacy (mainly to address health disparities). UC Irvine–Nursing Health literacy is taught throughout the curriculum in both the Adult Health Care course and Community- Based Health Care course for undergraduate nursing students. It is also taught in the Human Behavior and Mental Health courses at the graduate level. continued

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46 IMPROVING HEALTH LITERACY WITHIN A STATE TABLE 4-1 Continued Campus Response UCLA–Medicine Session held early in the third year curriculum on health literacy. Introduced “teach back” as a technique to verify patient understanding. “Low literacy” guidelines and scenarios developed as teaching resources. Design & Technology unit developing an online module based on presentation by Dr. Fernandez (UCSF). UCLA–School of Public Many courses in the Community Health Sciences and Health Health Services Departments describe the prevalence of low health literacy and the implications for communication and care delivery. Additionally, all Masters in Public Health program participants are required to do field work in underserved communities where they witness the impact of low health literacy first hand. UCSD–Medicine Included in Clinical Foundations Sequence that all students take during the preclerkship years, and highlighted particularly regarding issues of adherence to therapy and cultural competency. UCSF–Medicine Developed interactive presentation on common medical scenarios, possible clinical outcomes, and practical skills for students to use if encountering similar situations. Integrated into online training in health disparities. UCSF–Pharmacy Response pending. SOURCE: Mangione, 2010. level of both prose and numeric literacy and has not included specific competencies such as teach-back and speaking without using medical jargon. Often, health literacy is incorporated into the part of the curricu - lum that covers healthcare disparities. While this may be appropriate, Mangione said, such courses may not convey the fact that a large propor- tion of older adults have very limited health literacy and that it is not a condition that only affects minorities. There are several unresolved issues in the area of health literacy train- ing, Mangione said. There is little evidence about how much curriculum is enough to achieve competence in communicating with patients who have low health literacy. Preparing patients to succeed in following complex regimens may require a major effort and the use of a variety of tools on the

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47 THE ROLE OF THE UNIVERSITY part of providers. Given the high rates of low health literacy in California, health professionals may eventually be required to demonstrate compe- tence in this area, perhaps as a continuing medical education requirement for renewal of a medical license. One of the most widely known resources for health literacy training for healthcare providers is the AMA Health Literacy Toolkit. The toolkit provides a train-the-trainer type of curriculum. It includes a Manual for Clinicians, a video documentary, patient education materials, PowerPoint slides, participant guides, evaluation and reporting forms, and faculty instructions. The course is free online or can be obtained from the AMA bookstore. Over 30,000 physicians and other health professionals have come to training sessions that used the toolkit, and there are 38 healthcare teams that have been trained. Individual training is also available online. The training is free and provides continuing medical education (CME) credit to clinicians who complete it. In terms of effectiveness, an evaluation of the program has shown changes in clinical practice following the training, Mangione said. Train - ees reported a 72 percent increase in asking patients to repeat back instruc- tions, 80 percent reported using simple language and avoiding jargon, and 70 percent reported speaking more slowly after having completed the training. In terms of self-perception, 71 percent reported that they were delivering higher-quality care. Another training resource is the AHRQ Health Literacy Universal Pre- cautions Toolkit. The universal precautions approach is sensible because it takes a lot of time to judge whether a patient has low health literacy. Practitioners should use good communication approaches no matter who the patient is. The AHRQ toolkit is designed to help adult and pediatric practices ensure that systems are in place to promote better understanding by all patients. The toolkit is divided into manageable modules so its imple - mentation can fit into the busy day of a practice. It contains a Quick Start Guide, six steps to take to implement the toolkit, 20 different tools, and appendixes with over 25 resources such as sample forms, PowerPoint pre- sentations, and worksheets. Although designed for practices, the toolkit could be integrated into health professional curricula. The CDC has health literacy online training to educate public health professionals about limited health literacy and their role in addressing it in a public health context. This web-based course can be accessed online. It takes 1.5 to 2 hours to complete (http://www2a.cdc.gov/TCEOnline/ registration/detailpage.asp?res_id=2074). Trainees can earn continuing education credits upon course completion. Mangione suggested that the CDC health literacy training program could be used if there were a requirement for licensure related to health literacy training. Medical

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48 IMPROVING HEALTH LITERACY WITHIN A STATE schools and others could adapt or modify materials that have already been developed. In addition to these resources that are targeted to continuing educa - tion, health literacy curricula have been developed for health professional students at such schools as the University of Chicago, Pritzker School of Medicine. Health literacy curricula exist for practicing health professionals, and dissemination is under way, Mangione said. Integration of the content of these programs into existing modules on health communication or health disparities in undergraduate curriculum may be the most feasible approach. Reinforcing health literacy knowledge and skills in postdoc - toral training also needs to be addressed and the ACGME may have lever- age in this area. Consensus on required competencies and assessments are needed. Finally, as is the case for much of medical education, it may be impossible to know how much training is enough. But a stronger focus on health literacy in health professional training and the impact of this train- ing on healthcare quality and safety are needed, Mangione concluded. DISCUSSION Roundtable member Bernard Dreyer, in response to Mangione’s pre- sentation, discussed the need to teach physicians at multiple levels. At his institution, he said, first-year medical students are taught communication skills, including the teach-back method. He questioned whether the les- sons learned at this early stage of training persist until they are needed in practice. Training during residency is very important. There is a free online module on health literacy developed by the American Academy of Pediatrics (available through its online learning center, pedialink.org). Unfortunately, very few residencies have taken advantage of it, Dreyer said, but if the ACGME required it, then every program director would make sure their residents gained this health literacy training. Dreyer also raised an issue about the universal precautions approach to health literacy. The universal approach is appropriate, but he suggested that very low literacy families or patients really need something more than the universal approach. Perhaps a two-tiered approach is needed. Dreyer pointed out that the major problem to overcome is chang- ing behavior, and to a lesser extent, knowledge. He and his colleagues conducted a randomized controlled trial in their asthma clinic. All of the physicians used the teach-back method when providing information to patients during the trial. As soon as the trial was over, however, the physi- cians reverted to their usual behavior. Maintaining good practice is a real issue. More than one-third (37 percent) of the physicians said that they

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49 THE ROLE OF THE UNIVERSITY used teach-back consistently. This is likely an overestimate. Dreyer said that a study published in Pediatrics showed that 23 percent of practicing pediatricians reported on an anonymous survey that they use the teach- back method with their patients (Turner et al., 2009). Most of them used it occasionally, and not always. Another issue Dreyer raised is the tendency of clinicians to provide too much information, especially when dealing with a chronic disease. Physicians and nurses both commit this error. With good intentions, they want to give the patient all the available information. However, patients can become overloaded and overwhelmed. It may be advisable to provide two or three messages a visit. Additional messages could be provided on subsequent visits. Mangione agreed with Dreyer about behavior change. Much of the behavior of physicians is acquired during training through modeling of senior staff and mentors. Reaching more senior clinicians with training on health literacy could improve their ability to serve as appropriate role models. Unfortunately, there are entrenched and engrained poor ways of trying to convey information to patients, and trainees see these poor communication patterns. A sea change is needed in terms of how doctors talk to patients, Mangione said. Roundtable member Will Ross commented on Schillinger’s descrip- tion of the public health aspects of health literacy. Low health literacy really is a public health threat. Ross asked how to engage more institu - tions of public health, such as the public health trade associations. Are efforts under way to align these institutions to address population-based health literacy and remove it from the domain of health care? Schillinger referred the question to Rima Rudd, but mentioned that the American Public Health Association (APHA) has been quite engaged in health lit - eracy, and there are a number of public health schools that have been at the forefront in terms of curriculum development. He noted that the crosswalk between schools of public health and schools of medicine, nursing, dentistry, and pharmacy, while helpful when it happens, is not occurring consistently. Rima Rudd, Harvard School of Public Health, stated that the disci- pline of public health is far behind in its ability to do research in health literacy, but public health has taken the lead in integrating health literacy into curriculum. The Harvard School of Public Health has offered a course on health literacy since 1992. At Johns Hopkins Bloomberg School of Public Health, health literacy has been taught since the late 1990s. The Society for Public Health Educators (SOPHE), has also taken lead roles in advancing health communication with a focus on health literacy. Roundtable chair Isham raised the issue of the gap between research

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50 IMPROVING HEALTH LITERACY WITHIN A STATE and implementation. He found Schillinger’s example of the implications to public health of high salt consumption to be a compelling example of the gap between knowledge and remedial action. He suggested that a more active transit system is needed.