Toward Health Equity and Patient-Centeredness: Integrating Health Literacy, Disparities Reduction, and Quality Improvement: Workshop Summary (2009)

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3 Building the Foundation for Integrating Health Literacy, Disparities Reduction, and Quality Improvement in Health and Health Care A panel of experts discussed the urgency of creating, main- taining, and strengthening the intersection between health literacy, health disparities, and quality improvement. Health Literacy: A Matter of Health care quality and equity Michael Wolf, Ph.D., M.P.H. Northwestern University, Feinberg School of Medicine The following discussion on integrating quality, disparities reduction, and improvement in health literacy is primarily from the perspective of health literacy. As Isham mentioned earlier, there is a looming epidemic of low health literacy. Developing strategies to address low health literacy and its impact on health is problematic, partly because it is very difficult to untangle the contribution of literacy issues to health outcomes from many disparities issues. For example, the relationship between levels of education and health has long been known; research has established a link between low levels of education and poor health outcomes, including a greater mortality risk (NCHS, 1998; Lleras-Muney, 2002; IOM, 2006). This research, however, has not identified clear causal pathways for the relationship. 17 

18 TOWARD HEALTH EQUITY AND PATIENT-CENTEREDNESS Over the past two decades, research has examined the issue of low literacy and its impact on health. Of the more than 1,600 articles in the health literacy research literature, about half address the issue of written health information that is too complex for understanding by the average adult American who reads at an eighth-grade level. The other 800 articles focus on the link between poor literacy, poor reading skills, or poor health literacy and various health outcomes such as increased mortality. In exploring the link between literacy and mortality, Baker and colleagues (2007) found that a clear correlation exists between inad- equate health literacy and increased mortality rates (see Figure 3-1). In fact, the study showed that there is a 50 to 80 percent increased mortality risk for people with inadequate health literacy. Impor- tantly, the study also found that poor health literacy is a stronger indicator of mortality risk than overall years of schooling. Data from the National Health Literacy Survey of 1992 and the 2005 National Assessment of Adult Literacy show that African Americans and Hispanics are overrepresented in the lowest levels of literacy proficiency (Kutner et al., 2006). This also parallels the 100 90 Percent Alive 80 70 Adequate 60 Marginal Inadequate 50 0 20 40 60 80 Months FIGURE 3-1  Those with inadequate health literacy had higher mortality Figure 3-1.eps rates than those with adequate or marginal health literacy. Literacy and mortality risk are of the study population (n = 3260 Medicare managed care enrollees). Literacy is assessed by a shortened version of the Test of Func- tional Health Literacy in Adults. Results are adjusted for age differences. SOURCE: Baker et al., 2007. Copyright © (2007) American Medical Associa- tion. All rights reserved. 

BUILDING THE FOUNDATION 19 high school dropout rate in the United States; Hispanics have the highest drop out rate (22 percent), followed by African Americans (10 percent) and whites (6 percent) (Laird et al., 2007). The strong association between literacy and education as measured by staying in school is clear. More recent research has examined whether literacy may be a mediating factor in health disparities, thus helping to explain poorer health outcomes for racial and ethnic minorities. When health lit- eracy is taken into account, there is a 25 to 30 percent reduction in the relationship between race/ethnicity and health outcomes, Wolf said. Health Literacy and Quality How information is delivered to patients is an indicator of qual- ity. This may be a particularly important indicator in the ambula- tory setting, where the patient, not the provider, plays the key role in implementing care instructions received during what may have been brief encounters with the physician. Bailey and colleagues (2009) conducted a study that examined how medication instruc- tions were written in two health care systems, one a county hospital and the other an academic medical center with an electronic health record system. The study found that in the county hospital, the medication instruction “take one tablet a day” was written in 39 different ways (see Figure 3-2). In the academic medical center, the study found 54 different ways to enter the instruction “take one tablet a day.” It should be noted, however, that most of the instructions were entered in one of three preprogrammed ways provided by the electronic system, indicating that in most cases the physician is using the given dosage instructions. Rarely is the physician making modifications to the given dosage instructions. As far as medication instructions, then, there is a simple fix— standardize the system. Patients require clear, consistent, standard- ized information so that they have clear expectations about what they need to do. Results from a study that surveyed how 96 pharmacies recorded instructions for the same four prescriptions illustrate why patients make unintentional medication errors. For some, important auxil- iary warnings are not included, as was the case with the medica- tion Fosomax. If this pill stays in the esophagus, it causes irritation; therefore, instructions to remain upright and take fluids are crucial. Thirty-five of the instructions did not provide this warning. No men- 

20 TOWARD HEALTH EQUITY AND PATIENT-CENTEREDNESS Percent Distribution of Handwritten Sig Messages in a Public Hospital 50 45 40 35 30 25 20 15 10 5 0 1 3 5 7 9 11 13 15 17 19 21 23 25 27 29 31 33 35 37 39 Percent Distribution of Electronically Generated Sig Messages in an Academic Practice 50 45 40 35 30 25 20 15 10 5 0 1 3 5 7 9 11 13 15 17 19 21 23 25 27 29 31 33 35 37 39 FIGURE 3-2  Variation in prescription instruction. Greater variation occurs in the nonstandardized system (top graph) than in the standardized system Figure 3-2.eps (bottom graph). SOURCE: Bailey et al., 2009. tion was placed on the bottle for this very significant precautionary comment. The study also found that Latin abbreviations and medical short- hand appear on the medication; for example, one medication stated that it was “for UTI,” and this appeared on the bottle. Some patients might not recognize that this is an abbreviation for “urinary tract infection.” Furthermore, a medication label might instruct “take one tablet at bedtime” or “take one tablet daily” with no suggested administration time. Patients may become confused about when to take the medication or may not take it consistently over time. As these studies demonstrate, communication with patients about how to take medications is highly variable. Knowledge gained about how to enhance and clarify medication information to support 

BUILDING THE FOUNDATION 21 patient comprehension has not been incorporated into information for patients. Consumer medication information (CMI) sheets are intended for distribution to consumers when a prescription is filled. This information is developed by organizations or individuals other than a drug’s manufacturer. However, the CMIs are usually long and hard to understand; the average American adult reads at the eighth- grade level yet the majority of CMIs are written at a high school level or above. One study (Wolf et al., 2006) found that fewer than one-third of patients bothered to review the materials accompanying their prescriptions; rather, they were discarded with the bag. As a quality indicator, this is troubling. It is also the case that physicians and pharmacists do not rou- tinely engage in verbal counseling with patients about how to take newly prescribed medications (Metlay et al., 2005; Tarn et al., 2006). Physicians are routinely reported to be the most trusted source of health information and, for patients with low health literacy, the prescribing physician may be the only source of health informa- tion. Yet rarely is an effort made to confirm understanding with the patient in an active, rather than passive, way—for example, by asking the patient to “tell me what you heard” or do a “teach-back.” Consequently, patients across all literacy levels may have a less than optimal understanding of their diseases and treatments, which is likely to affect their ability to manage their health. For example, adverse drug events are associated with patient misunderstanding of instructions (Davis et al., 2006). There is discordance between individual levels of health literacy and the complexity of communication from the average health care system in the United States. The interface between the user of health care and the health care system must be simplified. There must be clear, concise, and consistent information delivered in a standard- ized manner. Patient comprehension must be supported so that patients will understand and take needed actions. Health literacy is an essential part of patient-centered care and of quality care. The future is not bright for increasing the health literacy of the American population. Parker and colleagues (2008) predict that by 2030 there will be a greater percentage of patients scoring in the lowest levels of proficiency in literacy and stagnating high school graduation rates. Although there has always been the problem of a large proportion of adults with insufficient levels of literacy to effectively engage the health care system, it appears that the propor- tion is going to grow substantially larger. The growing immigrant population will struggle with issues of health literacy. In the chang- ing economy there will be growth in knowledge-intensive jobs with 

22 TOWARD HEALTH EQUITY AND PATIENT-CENTEREDNESS less focus on the unskilled labor force. How will all of this affect the health care system? Call to Action The thrust for action in quality improvement should target four areas: patient skills, health materials, clinician skills, and health care system design. For patient skills, it is necessary to determine the knowledge patients need to effectively engage with the health care system. Best practices for writing health materials, how to display information over the Internet, and how to successfully deliver health materials in multimedia formats must be identified to improve the way in which information is communicated with patients. Health professionals need training in how to communicate the complex body of medical knowledge in ways that patients can understand. Finally, the system must ensure that patient education is a sustainable component of health care system design, which may in turn require new thinking about approaches to the delivery of health care. In the health literacy arena, new research is underway to test whether an evidence-based, enhanced label design for prescription drug containers improves older patients understanding of instruc- tions for use. Increased understanding of the instructions found on prescription drug labels may well lead to increased patient com- prehension, improved medical adherence, and improved health outcomes. The enhanced label will include a uniform medication sched- ule that helps to present the information visually for the patient. The uniform medication schedule, developed originally by Alastair Wood (2007), and a standardized prescription form that would have a schedule for taking medication that includes breakfast, lunch, dinner, and bedtime, are seen as tools to link what are now two discordant worlds, the world of pharmacy and the world of medi- cine. Creating patient-friendly prescriptions also requires eliminat- ing Latin abbreviations. Electronic health records can also assist in the promotion of health care quality by serving as a tool for standardizing communi- cation approaches with patients. The crucial question is, how are we supporting patients to engage in actions that promote their health? Attention needs to be directed to how education researchers are designing literacy curricula and to understanding how human factors researchers consider complex systems. Strategies to incorporate culturally competent care with 

BUILDING THE FOUNDATION 23 patient populations must be developed. Finally, Wolf concluded, sustainable solutions should be embedded across the continuum of care. INTEGRATING HEALTH LITERACY, DISPARITIES REDUCTION, AND QUALITY IMPROVEMENT Cindy Brach, M.P.P. Agency for Healthcare Research and Quality There are a number of ongoing conversations that focus on whether cultural competence is a part of health literacy or vice versa. Other conversations focus on how to integrate cultural competence into the mainstream quality movement. This workshop is designed to bring these conversations together. These conversations are very important if we are to move the field forward without wasting vital energy on separate efforts. Major Connections Between Health Literacy and Disparities There are several strong connections and commonalities between health literacy and disparities. First, efforts to advance health liter- acy and to reduce disparities both focus on improving communica- tion. Clinicians have a Western medical perspective that may not be shared by the patient either because of limited health literacy or cultural differences. Clinicians need to ask themselves such ques- tions as, “Does my patient share my understanding of how the body works?” It is critical to communicate information so that the patient understands and can act upon it, and that entails meeting the patient where he is, rather than making assumptions. A second connection common to health literacy, cultural com- petence, and disparities reduction involves overcoming language barriers. A common solution to language barriers is to translate relevant materials. However, if the health literacy level in the native language is not taken into account, the translation may not be effec- tive at imparting needed information. For example, a study that examined Latino patients’ understanding of prescription medica- tion instructions after the instructions were translated into Spanish found that only 22 percent could correctly demonstrate how to use the medication (Leyva et al., 2005). Even if health literacy has been addressed in the English version of a document, care must be taken that plain language is also used in the translation. For example, the Office of Human Research Protec- 

24 TOWARD HEALTH EQUITY AND PATIENT-CENTEREDNESS tions (OHRP) created an English-language brochure outlining the elements of informed consent. The brochure, which did a good job of explaining complex concepts using simple language, was then trans- lated into Spanish. Unfortunately, the language used in the Spanish translation was much more complex and the level of abstraction was higher than in the original brochure. This translation was, therefore, much more difficult to understand, demonstrating the importance of considering health literacy and cultural competence together when addressing language barriers for patients. Finally, health literacy and disparities are connected by health beliefs. For example, one study showed that a group of African American women in New Orleans shared a belief that high blood pressure is actually two separate diseases, rather than one. They believed that “high blood” and “high pertension” are different diseases and that hypertension medication only works with “high blood” disease. So if one of these women thought that she had the “high pertension” disease, she would not believe that taking medi- cation would help (Heurtin-Roberts and Reisin, 1992). From a health literacy perspective, these women clearly do not understand how their bodies work or that medication could help. From a disparities reduction perspective, these women held cultural health beliefs at odds with Western medical concepts. Regardless of the perspective, clinicians need to explore the health beliefs of their patients and come to a common understanding. Strategies for Connecting Health Literacy and Health Disparities One strategy for addressing health literacy and health dispari- ties in the context of quality improvement is to develop specific quality improvement projects that address both issues. For example, an organization might choose to embark on a quality improvement project aimed at improving health education materials. In that case, the organization might look at the mismatch between health educa- tion materials and the level of complexity or readability of the mate- rials, their cultural relevance, and whether the available language translations suitable for the patient population served are avail- able. Furthermore, health care systems could foster more stigma- free environments. This would entail making sure the environment, including signage, was welcoming regardless of health literacy, Eng- lish proficiency, or national origin. Another quality improvement project could be to improve clear communication and shared decision making. However, some cul- tures believe in being deferential to those in positions of authority. 

BUILDING THE FOUNDATION 25 Some also believe that it is insulting to ask the health care provider questions. All quality improvement efforts should therefore be cog- nizant of cultural, health literacy, and disparities issues. Another strategy for addressing health literacy and health dis- parities is to integrate health literacy and disparity reduction into all quality improvement activities. This addresses the concern expressed by some that quality improvement efforts could actually increase disparities. If incorrect assumptions are made about individuals and communities being served (as in the example above), it is possible that only certain segments of a population will benefit from a given quality improvement strategy. Those who are most vulnerable may be left further behind. To address this possibility, one could test the quality improvement strategy in a demonstration project with a set of diverse patients before implementing it widely. Such a test would make it possible to gather information about how the strategy works with different subgroups being served and allow for modifications to be made for the best care possible. Another approach to integrating health literacy and disparities is to examine the complexity of the health messages that patients receive and the demands made of patients in the health care setting, rather than on individual patient skills and abilities. A simple but important step is to facilitate a patient’s ability to locate the office or the treatment room in a health care facility. Facilities have addressed this by changing their signage, using maps, icons, and multiple lan- guages to help patients find their way. Typically, once the patient arrives at the correct destination, he or she must complete a large number of forms. Many adult learners say that this is the scariest thing about going to see a doctor, per- haps even keeping some individuals from visiting the physician’s office. Patients are expected to provide their own medical histories as well as describe their current symptoms. This requires an under- standing of what is important information to share and what is not. Further, because quality improvement efforts suggest that patients be a part of decision making, the expectation is that the patient will ask questions of the provider. If a referral is made to a specialist or for laboratory tests, the patient is expected to follow up on his own. The patient is also expected to adhere to the prescribed medication regimen and to engage in self-management of his or her health con- ditions. As Wolf described earlier, medication instructions are often far from clear, and complexity increases with multiple medications. Finally, patients are expected to pay their bills and work with their insurance companies for processing. These are major burdens for those seeking care. 

26 TOWARD HEALTH EQUITY AND PATIENT-CENTEREDNESS Assessment Tools and Data Collection The question is, then, how can these demands be reduced? For- tunately, there are some promising assessment tools that can be used to help identify problem areas as well as areas in which things are working well. Table 3-1 provides a list of these tools. One tool, developed by Rima Rudd at Harvard University (Rudd and Ander- son, 2006), focuses on the early visit issues described earlier (e.g., signage, forms). Rudd’s instrument also asks about the availability of multilingual patient education tools and whether there are lan- guage options in the telephone system for callers. Another prom- ising tool was developed by the Agency for Healthcare Research and Quality (AHRQ) for use in pharmacies to determine how well the pharmacy is meeting patient needs. This instrument provides guidance for performing an audit of the pharmacy, surveying both pharmacy staff and patients through focus groups. Finally, although not a formal tool, one technique used by a number of health care facilities is to conduct a patient walk-through of the facility with diverse patients providing feedback about what is difficult and what works well. An essential part of quality improvement is data collection and analysis. Data are necessary both to identify health disparities and to devise ways of addressing those disparities. The kinds of data that are important to collect include race, ethnicity, language, language needs, and literacy data. Health Research and Education Trust’s (HRET’s) Disparities Tool Kit provides guidance on collection of pri- mary data. Data on the community served are also needed. If it is not possible or feasible to engage in primary data collection within the community, there are typically several sources of community-level data available, such as census data, school district–level data, or public health department data. Geocoding is also an option. Geocod- ing involves using zip codes and census data to map patient demo- graphics within a specific area. Staff training is needed to ensure proper collection and analysis of data. Once the data have been collected, the next step is to use those data to identify disparities, to tailor the delivery of care to specific populations, and to describe the care being delivered. Another source of quality improvement data can come from CAHPS. These instruments are used in the annual NHDR to mea-   CAHPS—The family of CAHPS surveys and tools, housed at the Agency for Healthcare Research and Quality, are used in a variety of health care delivery settings to assess patient experiences of care, to provide reports on performance, and improve health care quality (AHRQ, 2008c). 

BUILDING THE FOUNDATION 27 sure patient experiences of care. AHRQ is refining CAHPS to assess the cultural competence and health literacy friendliness of clinical groups and practices. Additionally, the agency is focusing more spe- cifically on areas of cultural competence and health literacy. The goal is to generate very specific information that can be used for quality improvement by a health plan or a clinician group. Measurement on a national basis remains challenging. The Healthy People 2010 effort, for example, includes goals for which data are not available on a national basis. Brach concluded by presenting a list of tools that can be used to address disparities and health literacy in quality improvement. The AHRQ and Center for Medicare & Medicaid Services guides for culturally and linguistically appropriate services were developed to assist health plans with their quality improvement activities. There are two guides, one on oral language services and one addressing cultural competency. The Health Resources and Services Adminis- tration (HRSA) has developed a training curriculum (Unified Com- munication Training) that addresses health literacy, cultural compe- tency, and language barriers. Other tools include a Health Literacy Educational Kit developed by the American Medical Association, the AHRQ Health Literacy Pharmacy Tools, the HRSA Disparities Collaborative tools, and Play- ing It Safe with Medicines, developed by the American Academy of Family Physicians. patient-centeredness as an indicator of quality Mary Catherine Beach, M.D., M.P.H. Johns Hopkins University Patient-centeredness, equity, quality improvement, health lit- eracy, and cultural competence all overlap and intersect. The report Crossing the Quality Chasm (IOM, 2001) established six aims of qual- ity. Integrating quality improvement, health literacy, and disparities reduction emphasizes the intersection of the patient-centered and equitable aims. When one thinks of “equitable care,” one imagines a system free of racial and ethnic health disparities. But “equitable care” can also refer to a system free of disparities based on patients’ levels of health literacy. 

28 TABLE 3-1  List of Assessment Tools Organization Name of Resource Websites Assessment Agency for Healthcare Research and Is Our Pharmacy Meeting Patients’ Needs? www.ahrq.gov/qual/pharmlit/index.html Quality Pharmacy Health Literacy Assessment Tool Users Guide Centers for Medicare & Medicaid Culturally and Linguistically Appropriate http://www.acumentra.org/downloads/office- Services Services Assessment care/CLAS-assess-web.pdf National Center for the Study of Adult The Health Literacy Environment of http://www.ncsall.net/index.php?id=1163 Learning and Literacy and Health and Hospitals and Health Centers. Partners for Adult Learning and Literacy Initiative, Action: Making Your Healthcare Facility Harvard School of Public Health Literacy-Friendly Communication and Training American Medical Association Health Literacy Educational Kit https://catalog.ama-assn.org/Catalog/product/ product_detail.jsp;jsessionid=F1G31XPJSJFQNL A0MRPVX5Q?childName=&parentCategory Name=&parentCategory=&productId=prod106 0004&categoryName=&prodId=&start=&paren tId= Agency for Healthcare Research and • Strategies to Improve Communication • www.ahrq.gov/qual/pharmlit/ Quality Between Pharmacy Staff and Patients pharmtrain.htm • How to Create a Pill Card • www.ahrq.gov/qual/pillcard/pillcard.htm Health Resources and Services Unified Health Communication (health www.hrsa.gov/healthliteracy/training.htm Administration literacy, cultural competence, limited English proficiency) U.S. Department of Health and Human Quick Guide to Health Literacy http://www.health.gov/communication/ Services literacy/default.htm 

Cultural and Linguistic Appropriate Services Agency for Healthcare Research and • Providing Oral Linguistic Services • http://www.ahrq.gov/about/cods/ Quality oralling.htm • Planning Culturally and Linguistically • http://www.ahrq.gov/about/cods/ Appropriate Services planclas.htm Health Resources and Services A Provider’s Guide to Quality and Culture http://erc.msh.org/mainpage.cfm?file=4.1.0. Administration htm&module=provider&language=English U.S. Department of Health and Human •  Family Physician’s Practical Guide to A • https://cccm.thinkculturalhealth.org/ Service, Office of Minority Health Culturally Competent Care •  Health Care Language Services • https://hclsig.thinkculturalhealth.org/ Implementation Guide user/home.rails U.S. Department of Justice, Civil Rights Limited English Proficiency: A Federal http://www.lep.gov/ Division Agency Website Disparities Agency for Healthcare Research National Health Plan Collaborative http://www.chcs.org/ and Quality, Robert Wood Johnston NationalHealthPlanCollaborative/index.html Foundation, Center for Health Care Strategies, and RAND Corporation Agency for Healthcare Research and National Healthcare Disparities Report • http://www.ahrq.gov/qual/qrdr07.htm, Quality • http://nhdrnet.ahrq.gov/nhdr/jsp/nhdr. jsp American Public Health Association Health Disparities Database http://www.apha.org/programs/disparitiesdb/ Health Research and Educational Trust HRET Disparities Toolkit: A Toolkit for http://www.hretdisparities.org/ Collecting Race, Ethnicity, and Primary Language Information from Patients Continued 29 

30 TABLE 3-1  Continued Organization Name of Resource Websites Health Education Materials Agency for Healthcare Research and Consumer Materials (e.g., Quick Tips http://www.ahrq.gov/consumer/ Quality – When Planning Surgery, You Can Quit Smoking) American Academy of Pediatrics Plain Language Pediatric Education: https://www.nfaap.org/netforum/ Handouts for Common Pediatric Topics eweb/dynamicpage.aspx?site=nf.aap. org&webcode=aapbks_productdetail&key=b26c 2f09-26d3-4ba0-84b4-850d5785a9e4 American College of Physician Living with Diabetes: An Everyday Guide http://foundation.acponline.org/hl/diabguide. Foundation for You and Your Family htm National Library of Medicine MedlinePlus links to easy-to-read materials www.nlm.nih.gov/medlineplus/easytoread/ easytoread_a.html U.S. Committee for Refugees and Healthy Living Toolkit (multilingual health www.refugees.org/article.aspx?id=1851&subm= Immigrants information) 178&area=Participate Health Literacy and Patient Safety Agency for Healthcare Research and Questions Are the Answer www.ahrq.gov/questionsaretheanswer/index. Quality html American Medical Association Health Literacy and Patient Safety: Help http://www.ama-assn.org/ama1/pub/upload/ Patients Understand. Reducing the Risk by mm/367/healthlitclinicians.pdf Designing a Safer, Shame-free Environment The Joint Commission What Did the Doctor Say? Improving http://www.jointcommission.org/NR/ Health Literacy to Protect Patient Safety rdonlyres/D5248B2E-E7E6-4121-8874- 99C7B4888301/0/improving_health_literacy.pdf 

National Patient Safety Foundation Partnership for Clear Health http://www.npsf.org/pchc/ Communication Literacy National Institute for Literacy The Adult Literacy Education Health http://wiki.literacytent.org/index.php/Health_ Literacy Wiki Literacy National Literacy Coalition http://www.national-coalition-literacy.org/ about.html Reach Out and Read http://www.reachoutandread.org/ 31 

32 TOWARD HEALTH EQUITY AND PATIENT-CENTEREDNESS The Evolution of the Concept of Patient-Centeredness Patient-centeredness was first described by Balint (1969), who said that each patient “has to be understood as a unique human being.” In 1984, Lipkin and colleagues described a patient-centered interview as one in which the physician approaches the patient as a unique human being with his own story to tell, clarifies the patient’s concerns, understands the psychosocial dimensions of illness, and creates the basis for an ongoing relationship with the patient. This interpersonal model of patient-centeredness was the primary model for some time. Stewart and colleagues (1986) distilled the concept of patient- centeredness down to six dimensions, the first four of which focused on communication between the patient and the physician. Stewart also incorporated two additional concepts: prevention and health promotion as important components of patient-centeredness and the notion of being aware of one’s own personal limitations (Brown et al., 1986; Levenstein et al., 1986; Stewart et al., 1986). The 1990s brought a new shift in how patient-centeredness was conceptualized to expand beyond a particular clinical encounter and towards the health care system as a whole. Sherer and colleagues (1993) defined patient-centered care as “patient care wherein institu- tional resources and personnel are organized around patients rather than around specialized departments.” This is a broader definition that moves beyond patient–provider communication. The National Library of Medicine introduced the term patient-centered to its Medi- cal Subject Headings. Finally, in 2001, the IOM defined patient-centeredness as “pro- viding care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions” (IOM, 2001). Patient-centeredness now conceptually can include any aspect of communication between a patient and any component of the health care system (see Figure 3-3), from scheduling appointments, to access to understandable written materials, to comprehendible signage, phone calls, and e-mails. Patient-centered health care means that patient-centered interactions occur within patient-centered health care systems. Disparities in Patient-Centeredness There are, however, inequities in patient-centeredness. For exam- ple, at the level of the clinical encounter, data from the 2006 NHDR (AHRQ, 2006) show that the lower the educational level, the greater 

BUILDING THE FOUNDATION 33 Patient-centered Patient-centered Patient-centered interview communication care/access Original model of May include other modes of Focus on other aspects interaction and communication: of care: communication • communication with • convenient office hours between patients receptionists • ability to make and physicians • written communication appointments (education materials, • being seen on time signage) • having services available • phone calls, e-mails nearby FIGURE 3-3  Through the Figure 3-3.eps patient’s eyes: from individual interactions to systems. the likelihood that patients say their health care provider does not listen carefully, explain things clearly, respect what the patient had to say, or spend enough time with them. These findings are even stronger for African American patients than for white patients. Data also show that there are greater communication problems for His- panic respondents than for non-Hispanic white respondents. At the health care system level, a study by Reschovsky and O’Malley (2008) found that physicians with a high proportion of minority patients report greater difficulty in arranging referrals to specialists, inadequate time to spend with patients, and lack of timely reporting back on their patients. Disparities in Patient-Centeredness by Health Literacy Disparities also exist based upon level of health literacy. Patients with lower health literacy are more likely to report worse commu- nication with their health care providers (Schillinger et al., 2004) in the domains of general clarity, explanation of health condition, and explanation of the appropriate processes of care. Furthermore, patients with lower health literacy ask fewer questions of their phy- sicians in observed medical encounters (Beach et al., 2006; Katz et al., 2006) and are more likely to be seen by physicians as desiring a less active role in their health care, despite the fact that these patients prefer to be just as involved as those with higher levels of health literacy (Beach et al., 2006). 

34 TOWARD HEALTH EQUITY AND PATIENT-CENTEREDNESS Integrating Patient-Centeredness, Cultural Competence, and Health Literacy Cultural competence at the health care system level is the ability of the system to meet the needs of diverse groups of patients. At the provider level, cultural competence is the ability of the health care provider to bridge cultural differences in order to build an effective relationship with the patient. Key features of the health care system that effectively address health literacy are the ability of the health care organization to meet the needs of patients with limited health literacy. In such a system, it is the ability to effectively communicate with all patients, regardless of level of health literacy, and learn par- ticular strategies shown to be effective in improving care for those with limited health literacy. A health care system that is patient-centered is one that is respectful of and responsive to individual patient needs, prefer- ences, and values (IOM, 2001). It is important to highlight that patient-centeredness includes both cultural competence and health literacy, which ensure that health care systems and providers attend to the needs of people with different cultures, different languages, and different levels of health literacy. Patient-Centered Quality Improvement Interventions There are examples of quality improvement interventions designed to specifically reduce disparities and improve patient– provider communication. For example, there are three randomized controlled trials that are funded by different agencies and that are in three different disease areas: the Coached Care for Diabetes Pro- gram, funded by the Robert Wood Johnson Foundation; the Patient– Physician Partnership to Improve High Blood Pressure Medication Adherence (PPP), funded by the National Heart, Lung, and Blood Institute; and the Enhancing Communication and HIV Outcomes (ECHO), funded by AHRQ and HRSA. All three studies use patient coaching to enhance communication and reduce disparities. Prior to a medical visit, patients receive between 5 and 25 minutes (depend- ing on the study) of individualized coaching to help empower them in communications with their provider. Both the PPP and the ECHO trials also include a physician training component.   Patient coaching involves providing patients with the communication skills to talk more openly and proactively with their health care providers. This, in turn, leads to assistance in making health behavior changes and better self-management of chronic illnesses. 

BUILDING THE FOUNDATION 35 1. Access and Communication (9)** 2. Patient Tracking and Registry Functions (21)** 3. Care Management (20)** 4. Patient Self-Management Support (6)** 5. Electronic Prescribing (8) 6. Test Tracking (13)** 7. Referral Tracking (4)** 8. Performance Reporting and Improvement (15)** 9. Advanced Electronic Communications (4) FIGURE 3-4  National Committee on Quality Assurance standards for the Figure 3-4.eps patient-centered medical home. SOURCE: NCQA, 2008. At a health care organizational level, the American Medical Association’s (AMA’s) Ethical Force Program developed a perfor- mance measurement tool kit designed to assist organizations in meeting the needs of diverse patient populations. The tool kit facili- tates assessment of how effectively an organization communicates with patients and targets resources for improvement. It includes materials to use in gathering feedback from the health care system, staff, and patients; a user’s guide; aids for analyzing survey results; an analysis guide; and promotion materials to use in presenting survey results. Establishing a medical home is another approach to patient- centered care. As part of its physician practice connections program, the National Committee on Quality Assurance established nine standards and a scoring scheme for the patient-centered medical home (Figure 3-4). Each standard has a number of points accorded   A more complete description of the tool kit may be found at http://www.ama- assn.org/ama/pub/category/18225.html.   A medical home “is not just a building, house or hospital, but a team approach to providing health care. A medical home originates in a primary health care setting that is family-centered and compassionate. A partnership develops between the family and the primary health care practitioner. Together they access all medical and nonmedical services needed by the child and family to achieve maximum potential. The medical home maintains a centralized, comprehensive record of all health-related services to promote continuity of care” (Colorado Department of Public Health and Environment, 2008). 

36 TOWARD HEALTH EQUITY AND PATIENT-CENTEREDNESS to it. Standards with asterisks are “must pass” elements. The first standard, “Access and Communication,” has relatively few points accorded to it. Conclusions Conceptually, patient-centered care includes attention to patients’ health literacy, cultural context, and language preferences. However, considering these issues separately may emphasize their importance to patient-centered quality improvement efforts. Such efforts have the potential to reduce disparities by raising health literacy levels and targeting both the interpersonal (e.g., patient–provider) and health care system levels. reaction and discussion Ignatius Bau, J.D. Moderator An open discussion followed the panel’s presentations. Forum and roundtable members and public audience attendees were able to ask questions of the speakers. The following section summarizes the discussion. Business Community A key set of partners—employers—has not been included in the discussion at this workshop, one participant stated. Employers, who are paying for health care, consider disparities an economic issue that affects only lower-income people, not recognizing how perva- sive disparities are. Furthermore, she stated, transitions in employ- ment must be considered. A patient could be in a completely cultur- ally sensitive business unit where attention is paid to health literacy and patient-centered care, but there are no guarantees of what will happen once the patient leaves. If there is not shared recognition of the interconnectedness of disparities reduction, health literacy, and quality, the fragmented health care system will not progress. These issues need to be part of the discussion of health care reform. Brach responded that the business community is taking some steps in recognition of the interface. One example is a tool for employers to use to make decisions about purchasing health care benefits. This tool, created by the National Business Coalition on 

BUILDING THE FOUNDATION 37 Health, collects information from health plans and includes a section on disparities as well as some health literacy items. Isham responded that it is not only employers, but also the qual- ity improvement community, who are unaware of the importance of the need to integrate cultural competence, disparities reduction, and health literacy with quality improvement efforts. Patient Experience The role of the patient’s experience in interacting with health care organizations, physicians, and insurance companies is another factor in health literacy, one participant stated. Such interactions teach the patient a significant amount. Brach responded that there are several projects intended to use patient experiences as a mecha- nism for increasing health literacy. For example, the adult literacy community is working with providers to arrange field trips to pro- vider offices so that adult learners can increase their knowledge. Another approach is to use health information content in learning- to-read activities; one study indicated that adult learners learn how to read faster when they are reading real-life health content. Target Groups Specific populations to consider in improving literacy include at-risk populations and geriatric patients. Wolf noted that research in health literacy has focused primarily on at-risk populations. In response to an observation that geriatric patients had not been men- tioned in the exploration of issues, including the older patients who might be experiencing sensory declines or dementia, Wolf said that these populations are at very high risk for health communication difficulties. Not only do they require complex care, they are also asked to recall medical encounters, their own self-care, and what external supports are available to them. Health Literacy Measurement and Data Brach said that there is a problem with the way in which data on the levels of health literacy are presented. The implication of these data is that those who are at the below basic level have difficulty, but those with basic, intermediate, or proficient health literacy are able to understand and act on health information. One of the inter- mediate level tasks is to be able to read and understand an over-the- counter medication label. Those who score in the basic range, as well 

38 TOWARD HEALTH EQUITY AND PATIENT-CENTEREDNESS as those who are below basic, cannot perform that task. This clearly has patient safety implications. One measures health literacy at a particular point in time, Brach continued, yet an individual’s health literacy is dynamic. For exam- ple, if a patient is given a diagnosis of cancer, that patient’s ability to understand and process health information plummets because of all the worries, concerns, and thoughts that crowd in. Rather than thinking about health literacy in terms of discrete intervals, one should think of health literacy as a continuum. However, health care providers are asking their patients to be engaged in the management of their conditions, to understand and know what to do to improve their health. Thus, health lit- eracy improvement should focus on more than individual abilities; it should also address system demands. Models for Addressing Health Literacy, Disparities Reduction, and Quality Improvement The need for community support has been mentioned frequently, but in the United States there does not appear to be a good under- standing of how to leverage that support, one participant stated. As a researcher in Nepal and India, he found communities that had accomplished amazing things, even with no health care providers. In contrast, he said that the United States is cynical about what com- munities can do, and that health care providers have a jaundiced view of community involvement. Isham agreed that community support is a very complex topic with which many struggle. Another participant stated that the workshop discussion focused primarily on complex sick patients, with little focus on health pro- motion and prevention. Perhaps public health methods are more rel- evant than the medical home for addressing issues of health literacy and health disparities. Isham responded that the current models for a medical home are not robust enough to address the need for integration of health literacy, disparities reduction, and quality improvement. Addressing the needs of patients with relatively few medical needs or health literacy issues might be accomplished with improved information and communication techniques. Those in the middle part of the spectrum who have relatively simple, straightforward medical prob- lems may require more coordination to ensure they understand and can manage their conditions. However, those with multiple needs and low levels of literacy require medical home models that have not yet been developed. 

BUILDING THE FOUNDATION 39 Moving Toward Integrating Quality Improvement, Health Literacy, and Disparities Reduction One participant stated that the individual concepts of quality improvement, health disparities, and health literacy, as well as their integration, should be translated into the education and training of all health professionals. Wolf responded that pharmacy education is active in this area. It is necessary, however, to use a multidisciplinary approach to integrate these concepts across all levels, including pharmacy schools, medical education, and other provider educa- tion. Furthermore, other components of the health care system also require continuing education about these concepts. Currently, com- munication about integrating health literacy and disparities reduc- tion into quality improvement efforts is not crossing the chasm to these other components of the health care system. Isham responded that training future professionals is not enough. It is not sufficient to provide training and assume the difficulties will be fixed. What is critical is to determine the structures and systems that should be developed to support integration. Once this is accom- plished, individuals can be trained to use these systems. Beach agreed that training is probably only a small part of the solution. This is particularly true because there is still much to be learned about what the most effective ways of communicating are. Until there is better knowledge about the best methods for effec- tive communication and training, it is difficult to determine what changes should be made in the already crowded health professional education curriculums. Brach agreed that while training alone is insufficient, it is neces- sary. Unfortunately, students often emerge from medical school as worse communicators than when they entered because they have been trained in a very technical language and have been rewarded for the use of this language. A very encouraging development is the communication component of the physician national licensure examination.