5
Patients

Coordinator


Joyce Dubow, AARP


Other Contributors


Jennifer Bright, Mental Health America; Maureen Corry, Childbirth Connection; Carolina Hinestrosa, National Breast Cancer Coalition; Ann Kempski, SEIU; Carol Sakala, Childbirth Connection; Gail Shearer, Consumers Union

SECTOR OVERVIEW

The U.S. healthcare system is in crisis. Healthcare quality is, at best, uneven, with wide variation based on geography and patient characteristics, such as age, gender, race, and ethnicity. Although the United States spends more of its gross domestic product on health care than any other nation, higher spending does not necessarily yield better outcomes.

Since 2000, health insurance costs have increased by 87 percent (Kaiser Family Foundation/Health Research and Educational Trust, 2006). As healthcare costs continue to escalate, employers and workers find it increasingly difficult to afford coverage. The percentage of those with employer-sponsored coverage dropped from 60.2 percent in 2005 to 59.7 percent in 2006 (U.S. Census Bureau, 2007). Although the decline between 2006 and 2005 was slight, the continuing trend is troubling. Moreover, 47 million were uninsured (U.S. Census Bureau, 2007). In the United States, 42 percent of people with chronic conditions report that they have skipped medications, not seen a doctor, or forgone recommended care because of costs (Schoen et al., 2007). A principal factor contributing to increasing long-term health expenditures is adoption of new technologies and innovations that have not undergone adequate scrutiny to determine comparative clinical or cost-effectiveness (Centers for Medicare and Medicaid Services, 2007; Davis et al., 2007; U.S. House Committee on Appropriations, Sub-



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5 Patients Coordinator Joyce Dubow, AARP Other Contributors Jennifer Bright, Mental Health America; Maureen Corry, Childbirth Connection; Carolina Hinestrosa, National Breast Cancer Coalition; Ann Kempski, SEIU; Carol Sakala, Childbirth Connection; Gail Shearer, Consumers Union SECTOR OVERVIEW The U.S. healthcare system is in crisis. Healthcare quality is, at best, uneven, with wide variation based on geography and patient characteristics, such as age, gender, race, and ethnicity. Although the United States spends more of its gross domestic product on health care than any other nation, higher spending does not necessarily yield better outcomes. Since 2000, health insurance costs have increased by 87 percent (Kaiser Family Foundation/Health Research and Educational Trust, 2006). As healthcare costs continue to escalate, employers and workers find it increas- ingly difficult to afford coverage. The percentage of those with employer- sponsored coverage dropped from 60.2 percent in 2005 to 59.7 percent in 2006 (U.S. Census Bureau, 2007). Although the decline between 2006 and 2005 was slight, the continuing trend is troubling. Moreover, 47 million were uninsured (U.S. Census Bureau, 2007). In the United States, 42 percent of people with chronic conditions report that they have skipped medica- tions, not seen a doctor, or forgone recommended care because of costs (Schoen et al., 2007). A principal factor contributing to increasing long- term health expenditures is adoption of new technologies and innova- tions that have not undergone adequate scrutiny to determine comparative clinical or cost-effectiveness (Centers for Medicare and Medicaid Services, 2007; Davis et al., 2007; U.S. House Committee on Appropriations, Sub- 9

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9 LEADERSHIP COMMITMENTS TO IMPROVE VALUE IN HEALTH CARE committee on Military Construction, Veterans Affairs, and Related Agen- cies, 2007) as well as regional differences in the use of supply-sensitive services (Regenstreif, 2005). In addition, as noted by the Institute of Medicine, patients are often frustrated with their inability to participate as full partners in their health care (Institute of Medicine, 2001). Inconvenient access to care, a lack of information to inform decision making, cultural and linguistic barriers, financial impediments to service, and, too often, the “tone” of the physician- patient relationship are just a few of the reasons for patient frustration and dissatisfaction. Exacerbating the problems of escalating costs and quality gaps is the dearth of reliable evidence to inform clinician and patient decisions. A substantial portion of the medical care delivered in the United States is not based on or supported by evidence, although experts differ on the degree to which this is the case (Learning What Works Best, 2007). Despite the poten- tial that the development, dissemination, and implementation of better evi- dence holds for patients, the infrastructure and financing required to pursue the necessary research are lacking. As a result, information on effectiveness is “almost never available” (Smith, 1991). Even when it is available (for example, for pregnancy and childbirth), it is not widely applied or may be used or interpreted inconsistently. As the end users of health care, consumers and patients would realize great benefit from a reengineered healthcare system designed to achieve improved quality and safety as well as greater efficiency and cost reduction (Shortell et al., 2007). Thus, they have a vested interest in seeing that the scientific basis for care expands. Yet, in general, the public is not aware of the concept of evidence-based medicine (EBM), nor does the current ter- minology used to describe the concept resonate with consumers when it is presented to them (Shore and Carman, 2006). The structure and process for generating evidence and evaluating com- parative effectiveness must instill confidence among all stakeholders, includ- ing consumers-patients, that the research supporting the information is valid and fair. An independent, unbiased entity could potentially have the requisite credibility among all parties if it conducted investigations in accordance with acceptable scientific standards and operated in a fully transparent manner. Such a trusted intermediary for evidence could build and maintain public support by disseminating meaningful and reliable information. For consumers and patients, trust in the process would be enhanced if research topics were significant and important to them. Full transparency and disclosure, as well as open and inclusive processes in the identification of research priorities, the formulation of research questions, and the devel- opment and application of evidence, are essential. Consumers believe that they are justifiably suspicious of the motivation

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99 PATIENTS of entities offering healthcare guidance and advice if these organizations have conflicting interests. Instilling confidence in EBM is further compli- cated by the fact that choice—a cherished value among consumers and a proxy for quality—could be constrained by the application of evidence (e.g., the tiering of benefits and coverage determinations) (Office of New York State Attorney General Andrew M. Cuomo, 2007). Some consumer groups consider that the application of EBM may be a backdoor way to ration healthcare benefits or deny coverage. Therefore, steps must be taken to ensure that, in the guise of applying the “best evidence,” individuals are not inappropriately denied the needed care. Education would help con- sumers better understand EBM as a means to improving quality and safety and ensuring appropriate care, not as a tool to unfairly or arbitrarily justify the denial of treatment. As a policy matter, it will be necessary to determine the proper balance between the need for standardizing care and addressing individual needs by allowing appeals and exception processes when the need for deviating from standard practices arises. Consumers need to be supported to help them understand options, benefits, harms, probabilities, and scientific uncertainties (O’Connor et al., 2003). They also need assistance to clarify their personal values in relation to the benefits and the potential harms of particular interventions. The research literature finds that consumers have an “optimism bias” that causes them to consistently underestimate personal risk, particularly when they consider hazards that they perceive as having a low probability of occurring (Hibbard et al., 2003). Therefore, they may overestimate the benefits of a particular treatment option, whereas they may downplay potential harms (Brownlee, 2007). Decision aids or shared-decision-making programs can supplement the counseling that practitioners provide. Findings from studies assessing decision support programs suggest that patients who use these tools achieve increased knowledge, have more realistic expectations about the benefits and harms of the treatment options, and feel less uncertainty about feeling uninformed (O’Connor et al., 2003). For example, patients using decision aids were 21 to 44 percent less likely to choose a surgical procedure for back pain, excessive bleeding, and angina (O’Connor et al., 2003). Nevertheless, although many decision tools have been tested in randomized trials and can help patients formulate decisions, far too few tools have undergone such rigorous investigation, considering the breadth of decisions that consumers must make (O’Connor et al., 2003). Experts also advise that patients and physicians perceive the decision tools to be fair, accurate, and balanced (Kasper et al., 1992). In addition, comparative reports using measures that are based on evidence-based guidelines could inform consumer decisions in selecting health plans and providers. Appropriate research methods, such as cogni- tive and usability testing, should be applied to ensure that the intended

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00 LEADERSHIP COMMITMENTS TO IMPROVE VALUE IN HEALTH CARE audience understands the materials developed for consumer use. The dif- ficulties that consumers may have with information on healthcare quality are not necessarily because they are “confused” or because the information is too technical. Rather, the information that is currently available is not always interesting or relevant to consumers, particularly because it is not typically available at the level of analysis that is the most meaningful to patients (i.e., at the physician or practice level). However, there are strategies that could mitigate some of these con- cerns. Efforts are under way on many fronts to guide the development and presentation of information used to inform consumer choices. To cite just two examples from multistakeholder consensus initiatives, a workgroup on cost/price transparency of the Quality Alliance Steering Committee (Health Care Quality Leaders Join Forces, 2006) has drafted principles for report- ing cost and price information to consumers; and in April 2006 the AQA Alliance, a multistakeholder consensus group that focuses on physician- level measurement, endorsed principles for public reports that include spe- cific guidance for consumer reports (AQA Alliance, 2006). In addition, the Aligning Forces for Quality program is doing extensive research, including focus groups and surveys, to determine how best to communicate with the public on health care quality. Evidence-based content to help consumers understand healthcare qual- ity needs to be supported by communication strategies that promote clear, understandable messages directed to target audiences through appropriate channels (Robert Wood Johnson Foundation-Aligning Forces for Quality, 2007). Strategies to advance EBM should include communication and edu- cational approaches designed to engage consumer organizations as well as help individuals understand how EBM relates to their personal experience and its potential to improve quality and safety and to achieve savings. These messages need to recognize the uncertainty in medicine and the need for patients to make trade-offs as they weigh the available options with input from their clinicians (Fraenkel and McGraw, 2007). Communication strategies can be designed to improve understanding and allay confusion. Although health information is clearly more complex and laden with sub- jective factors, communication initiatives can be informed by other disci- plines, such as the financial industry, that have found ways to communicate effectively with consumers about complex topics (Pronovost et al., 2007). Sector Profile Before the sector is described, it is important to address the fact that “consumer” organizations do not all refer to themselves using this term. For example, some prefer to call themselves “patient advocates.” A recent survey of 2,809 people determined that of the possible labels—patient,

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0 PATIENTS individual, person, consumer, client, customer, or other—healthcare recipi- ents preferred the terms individual and patient (32 and 31 percent, respec- tively). Only 7 percent of those surveyed preferred the term consumer (Robert Wood Johnson Foundation, 2007). In general, the most suitable term depends on the context in which it is used. Thus, when an individual is receiving healthcare services, she or he is appropriately described as a patient. When the individual is considering insurance options, the term customer or consumer may be more suitable. This statement attempts to take the context into account, but this is not necessarily a signal for a strong preference for any particular descriptor except to recognize that terminol- ogy is situational. Consumers are not monolithic, nor are the organizations that represent them. Just as demographic characteristics, education, and socioeconomic factors distinguish individuals, organizations representing consumers and patients differ with respect to size, purpose, organizational structure, gov- ernance, and source of funding. Financial support may come from member- ship fees, dues, philanthropy, or other sources. It should be noted that the source of funding is often a contentious and divisive issue among consumer organizations. Finally, some consumer organizations emphasize local action and rely on grassroots support. Others have broad-based memberships and have both a local and a national orientation. Still other groups gain impact from targeted expertise, whereas many consumer organizations provide services for members and advocate for public policy change. Table 5-1 offers a typology of the types of organizations that represent and reflect consumer perspectives; groups rarely belong in only a single category, and they typically engage in multiple activities and have multiple objectives and purposes. Consumer organizations affect public policy in various ways. For example, Consumers Union emphasizes its objectivity and independence from vested interests. Labor unions, such as Service Employees Interna- tional Union, affect the healthcare marketplace through their influence on employer-sponsored benefit design and their advocacy before state and fed- eral policy makers. Others, such as AARP, bring the strength of numbers as well as a politically active cadre of volunteers to influence federal and state legislative and regulatory bodies. The National Breast Cancer Coalition establishes public policy and legislative priorities in research and access to health care and mobilizes its nationwide grass roots to enact its agenda and also trains and educates its members to promote systems change to achieve its mission of ending breast cancer. In addition to individual organizational efforts, consumer groups work collaboratively among themselves as well as with other stakeholders or in ad hoc coalitions to improve quality, advance public accountability, promote health insurance coverage, and carry out other initiatives. For

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02 LEADERSHIP COMMITMENTS TO IMPROVE VALUE IN HEALTH CARE TABLE 5-1 Typology of Organizations That Represent and Reflect Consumer Perspectives Focus Example Condition specific National Breast Cancer Coalition, Childbirth Connection, Mental Health America, Epilepsy Foundation, American Diabetes Association Advocacy AARP, Consumers Union, National Breast Cancer Coalition, Childbirth Connection, Mental Health America, Families USA, National Consumers League, National Health Council Public education Consumers Union, AARP, NBCC, Childbirth Connection, Mental Health America, Center for the Study of Services/ CheckBook magazine, National Health Council Labor unions Service Employees International Union, National Education Association, American Federation of Labor and Congress of Industrial Organizations Population specific National Partnership for Women and Families, AARP, Children’s (e.g., by age, gender, or Defense Fund race/ethnicity/culture) Targeted purpose (e.g., Family Voices, National Alliance on Mental Illness, Alzheimer’s family support) Association Broad, crosscutting/ Consumers United for Evidence-Based Healthcare, National consensus building Health Council NOTE: Many organizations represent consumers from multiple perspectives. example, the Alliance for Better Health Care, is a coalition of consumers, employers, unions, providers, health plans, pharmacists, and researchers who share the conviction that high-quality health care requires good evi- dence to support sound medical decision making (Alliance for Better Health Care, 2007). The National Working Group on Evidence-Based Healthcare is a mixed stakeholder coalition consisting of consumers, disease-specific groups, caregivers, practitioners, and caregivers that educates and advo- cates for issues about evidence. ACTIVITY CATEGORIES Policy advocacy and participation in national policy development to pro- mote quality, safety, comparative effectiveness, and consumer protections. A considerable amount of public policy advocacy is already under way among consumer organizations. Several advocate (independently or collaboratively with other organizations) in support of funding for

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0 PATIENTS comparative effectiveness research (e.g., expansion of Section 1013 of the Medicare Prescription Drug, Improvement, and Modernization Act of 2003); the establishment of a stable and independent infrastructure for comparative effectiveness research; funding for public health efforts in support of evidence-based prevention and screening; the acquisition of additional resources for the Food and Drug Administration to conduct postmarketing surveillance after drugs and devices have been approved; greater transparency of cost and quality information, as well as the disclosure of proprietary relationships that may influence treatment recommendations; secure, electronic, interoperable health information exchange; changes to medical school curriculums and continuing educa- tion to address quality improvement and application of EBM; reform that aligns payment with performance objectives; funding for a national U.S. subscription to The Cochrane Library that would give all residents free access to this resource; and the development of model informed consent statements. Representation of the consumer-patient perspective on policy-making boards, task forces, and committees to articulate and advance consumer preferences and needs, build capacity within the consumer sector to partici- pate effectively with technical experts, and help professionals understand the essential role of full consumer participation on such bodies. There is growing recognition of the value of having consumer and patient representation on decision-making and advisory bodies in the health- care sector, but there are not sufficient numbers of well-trained individuals to fulfill the growing demand for this type of representation. Consumer organizations acknowledge the importance of enlarging their ranks of qualified consumer-patient spokespeople. To effectively represent consumer and patient views in policy development, the design of research agendas, and the implementation of public policies, train-the-trainer and train-the-advocates programs are needed to enlarge the consumer advocacy base. Such programs should include training on the fundamental concepts of the research disciplines and areas of policy that consumers seek to influ- ence. For example, Consumers United for Evidence-Based Healthcare has developed online modules to provide consumer advocates with critical appraisal skills. The National Breast Cancer Coalition (NBCC) developed Project LEAD, a family of science courses for consumer activists that has trained almost 1,300 individuals. The NBCC courses cover basic science, epidemiology, biostatistics, concepts of evidence-based health care, and consumer advocacy. There are advanced courses in clinical trials and quality care. Faculty members are researchers and experts in adult learning. These training efforts have enabled the meaningful participation of consumers

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0 LEADERSHIP COMMITMENTS TO IMPROVE VALUE IN HEALTH CARE at all levels on research programs, most notably, the U.S. Department of Defense Breast Cancer Research Program, collaborations on specific clinical trials, and patient-led strategic consensus processes. Development and dissemination of valid and reliable information that is publicly available, provided by trusted sources, and disseminated either directly or through intermediaries. In general, information should be meaningful and useful for end users (consumers, purchasers, etc.). The content should help consumers under- stand risk and uncertainty and how to use complex systematic reviews and treatment guidelines; information on the benefits and harms of pre- ventive, diagnostic, monitoring, and therapeutic interventions; and the evidence behind standards of care. Such information should help inform patient decisions and activate them so that they can establish an effective partnership in their care. Information should address condition-specific inventories of (1) evidence that is ready to be implemented, (2) disproven practices, (3) practices with trade-offs that should be carefully weighed, and (4) effective practices with few or no known harms. Experts advise that the manner of presentation can be as important as the content itself (Hibbard et al., 2003). Materials need to use plain English (and other languages, as appropriate) in easily understandable and evalu- able formats. Health literacy and numeracy levels need to be assessed and taken into account when information is designed, as do the cultural and socioeconomic factors that may affect a target audience. It is generally understood that it is most efficient and effective to take advantage of the multiple opportunities to influence consumer decision making at the time of greatest impact—the “teachable moment.” These moments typically occur when people are contemplating the choice of health plans, health professional, hospital, skilled nursing facilities, and so forth; at the time of a diagnosis when the selection of a treatment option is required; when self-management techniques are presented; when a patient is considering whether or not to participate in a clinical trial; and as patients contemplate healthy lifestyle changes, such as changes to their diet or to their exercise and physical activity patterns, smoking cessation, and substance abuse prevention and treatment. For pregnant women, the 9-month prenatal period offers a window of opportunity to provide them with information based on the best available evidence to help them make informed decisions about maternity and newborn care. In reaching out to educate consumers about EBM, it is necessary to communicate with general consumer audiences as well as consumer groups that represent specific health conditions and specific populations on the basis of socioeconomic or demographic characteristics. To achieve

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0 PATIENTS the maximum impact, communications specialists advise the appropriate segmentation of target audiences. Research should be conducted to iden- tify these segments (on the basis of, for example, patient characteristics, health status, disease, decision-making skill, or health literacy level) so that materials can be customized for different audiences. Studies are needed to identify and evaluate effective dissemination approaches. The research agenda should test print formats (e.g., different lengths, fonts, colors, and graphics), refine assessment tools to determine individuals’ health literacy skills, test formats and content in different languages, determine whether different media are more effective, and identify those who are the most trusted and effective intermediaries. Finally, as noted earlier, decision aids are valuable tools that can be used to support evidenced-informed deci- sions. Therefore, an important research focus should be the expansion of evidence-based decision aids. There are many good examples of effective dissemination approaches that adapt conventional educational vehicles to advance evidence-based frameworks. For example, Childbirth Connection makes relevant evidence- based resources accessible to health professionals by specialty area in the health professional area of its website, where it maintains an Evidence- Based Maternity Care Resource Directory; Childbirth Connection also has, since 2003, contributed a quarterly column, Current Resources for Evidence-Based Practice, that is published simultaneously in the official journals of the leading U.S. maternity nurses association and of the leading U.S. midwifery association. Information can be disseminated in waiting rooms; on pharmacy counters; in libraries and schools; and through com- munity organizations (e.g., senior organizations), health insurance plans, pharmacy benefit managers, and employers and human resources depart- ments. Specialized websites help consumers obtain the most accurate, reli- able information. Public education efforts to focus on building broad public awareness of quality issues using multiple, segment-appropriate media (e.g., newspapers and magazines, public service announcements, brochures, television, and radio). It may be instructive to examine other public-interest initiatives to determine whether lessons may be learned from public campaigns on smok- ing, drunk driving, human immunodeficiency virus transmission and safe sex, and so forth or from the efforts of the Partnership for a Drug-Free America. It may also be instructive to consider the regulation of commercial advertising and marketing practices in support of EBM. Equally important are education messages and tools tailored for caregivers, such as family

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0 LEADERSHIP COMMITMENTS TO IMPROVE VALUE IN HEALTH CARE members, who may need to have such information to assist their loved ones with navigating complex healthcare choices. An important component of public education is education of mem- bers of the mainstream media on how to report on sophisticated medi- cal research to a general audience and improvement of the accuracy of medical reporting and the presentation and evaluation of evidence and new healthcare interventions. (See, for example, www.healthnewsreview. org; the Kaiser Family Foundation health policy journalism fellowships may serve as a model that can be used to promote better reporting and to stimulate journalists’ interest in this area.) Finally, education initiatives should not overlook opportunities to train clinicians to communicate more effectively with patients, enhance clini- cian awareness of the wide range of health literacy and decision-making skills among consumers, as well as train clinicians on the need to respond appropriately to consumer cultural and language preferences. Ultimately, medical education and training need to be revamped to become more patient focused, to incorporate courses on patient communication to teach physicians how to foster patient autonomy and self-management, and to encourage patient engagement in decision making. Consumer participation in research and research design is important to ensure that the research is transparent, is clinically important, reflects consumers’ interests and preferences, and helps answer questions of clinical relevance to patients (e.g., does the use of magnetic resonance imaging for breast cancer screening among certain at-risk populations lead to decreased mortality or just to more diagnoses?) For example, Childbirth Connection commissions and conducts research to fill priority gaps in knowledge of special interest to consumers. It involves consumers from North America on the Cochrane Pregnancy and Childbirth Group’s Consumer Panel. These consumers act as referees of draft systematic reviews to help improve the quality of the reviews and ensure that they meet the needs of consumers. Environmental Scan Public Views on Quality In 2006, only 13 percent of Americans thought that the healthcare system was working well, although the vast majority did not believe that it had reached a state of crisis (Blendon et al., 2006). It is noteworthy that whether or not one has comprehensive and secure health insurance cover- age affects public attitudes. In addition, despite their dissatisfaction with the healthcare system, 84 percent rated the medical care that they received as either “excellent” or “good.”

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0 PATIENTS Perceptions of Quality Experts generally agree that consumer perceptions are a valid and impor- tant dimension in assessing healthcare quality. The Agency for Healthcare Research and Quality (AHRQ) has funded the development of a suite of con- sumer surveys (Consumer Assessment of Healthcare Providers and Systems [CAHPS]) designed to probe aspects of care (1) about which consumers and patients are the best source of information and (2) that consumers and patients have identified as being important. The National CAHPS Bench- marking Database (Agency for Healthcare Research and Quality, 2007), the national repository for data from the CAHPS family of surveys, is an impor- tant resource for survey sponsors, researchers, and others interested in using comparative CAHPS survey results and detailed benchmark data. Other patient surveys also assess patients’ experiences with their care, including Childbirth Connection’s national Listening to Mothers surveys, which elicit women’s childbearing experiences and evaluations of their care (Declerqc et al., 2006), and the Experience of Care and Health Outcomes Survey, which assesses patients’ experiences with behavioral health services in managed care plans and behavioral healthcare organizations. Information Preferences The type of information that consumers request is often different from the types of information most typically available. CheckBook magazine, published by the nonprofit Center for the Study of Services, found that the type of physician rating information that its subscribers prefer to have first is how the surveyed doctors rated other doctors when the surveyed doctors were asked which doctors they would consider to be the most desirable as the provider of care of a loved one (as opposed to, for example, informa- tion about how doctors rated when various healthcare system records were used to measure how well doctors keep costs down) (Krughoff, 2007). CheckBook magazine also confirms other research that consumers value information about how well their doctors communicate (listening and explaining to patients). Although the proportion of consumers who use information about health- care quality for decision making is growing, in 2006, only about 20 percent reported that they had seen information about health insurance plans, hos- pitals, or doctors and then factored such information into a decision (Kaiser Family Foundation/Agency for Healthcare Research and Quality, 2006). An earlier Kaiser Family Foundation/AHRQ study found that those who had seen information did not use the quality information because the information that they saw was not specific to their personal health conditions or concerns; factors other than quality, such as location or cost, were more important to

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0 LEADERSHIP COMMITMENTS TO IMPROVE VALUE IN HEALTH CARE their decision making; and the information that they saw about quality was confusing or difficult to understand (Kaiser Family Foundation/Agency for Healthcare Research and Quality/Harvard School of Public Health, 2004). Finally, with respect to medical errors, the vast majority of patients (87 per- cent) believe that physicians should be required to tell patients if a preventable medical error resulting in serious harm was made in their care. Decision Making Many people have difficulty managing the volume of information that they receive and identifying which information will best promote their values and preferences. Evidence shows that people can process and use only a limited number of variables and that having to differentially weight multiple factors in making trade-offs increases the cognitive burden in deci- sion making (Hibbard et al., 2003). Furthermore, many consumers, particu- larly some older individuals, are burdened by having to make choices and are likely to need assistance (Hibbard et al., 2000). Therefore, in develop- ing communication strategies, the research findings that describe how con- sumers use information must be built on and the decision-making skills of target audiences must also be considered by employing methods that lower the cognitive effort required to make decisions. Effective techniques include summarizing and interpreting information for users and helping them apply the information to their personal situations through the use of narratives or testimonials (Demchak, 2007b). A 2004 national survey found that although most people want to be asked whether they prefer to be offered choices and asked their opinions by their doctors, preferences for participation in decision making vary by age, ethnicity, and gender. Women and those who are healthier and better edu- cated prefer to be involved, whereas respondents who are African American, Hispanic, or over age 45 years are more likely to prefer that their physicians make the decisions (Levinson et al., 2005). The authors of the study con- clude, “While a collaborative model of decision making is popular and may be desirable, it is by no means universally held by the public” (Levinson et al., 2005). However, other research finds that among those who do prefer to collaborate in their care, less than half achieve their preferred level of participation in their own care (Fraenkel and McGraw, 2007). Patient Engagement Patients who are more engaged, confident, and informed make better healthcare decisions. Using a tool (Hibbard et al., 2004) that she and her colleagues developed to assess patient knowledge, skill, and confidence for self-management, Judith Hibbard of the University of Oregon estimates

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09 PATIENTS that in a national sample of adults ages 45 years and older, approximately 40 percent score in the low end of the activation measure, which indicates that they do not recognize their need to play an active role in their own care; individuals who are sicker tend to have lower scores than the general population.1 However, the degree of patient activation can be modified with strategies designed to encourage engagement (Demchak, 2007b). Health Literacy and Numeracy Health literacy is the “degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (Institute of Medicine, 2004). More than 47 percent of adults in the United States have difficulty locat- ing, matching, and integrating information in texts (Institute of Medi- cine, 2004). The capacity to navigate successfully in the healthcare system requires patients to have adequate health literacy skills. It is important to recognize that the level of health literacy required is situation specific: more complex and complicated healthcare situations require higher, more advanced skills. Thus, even if an individual is able to read materials whose content is familiar, unfamiliar subjects or concepts may be more difficult to understand. The level of functional health literacy has been found to be “markedly lower” among older individuals, even after adjustment for the higher prevalence of dementia or other cognitive impairment, chronic disease, or other health conditions in that population (Dubow, 2004). An analysis of the content of English- and Spanish-language healthcare-related websites indicated that, as written, the sites required a high school or higher level of reading ability (Berland et al., 2001). Studies that seek to determine whether information presentation meth- ods differentially influence consumers with different numeric skills find that “less is more,” particularly for those with lower numeracy skills (Peters et al., 2007). Of course, all materials should be written clearly and precisely so that they are understood by their intended audiences, includ- ing culturally diverse population groups. It is also important to assess the content and format for their appropriateness for older consumers. AHRQ’s website Talking Quality.gov provides guidance on presenting information on healthcare quality to consumers and includes guidance on designing materials. Similarly, www.usability.gov, a website maintained by the U.S. Department of Health and Human Services, provides guidance on creating websites that are usable and useful and that contains an automated usability tool, the Usability Test Environment, to allow federal website managers to 1 Personal communication, J. Hibbard and J. Dubow, AARP Public Policy Institute, Wash- ington, DC, 2007.

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0 LEADERSHIP COMMITMENTS TO IMPROVE VALUE IN HEALTH CARE design their websites in citizen-centric formats (U.S. Department of Health and Human Services, 2007). Health Information Technology Health information technology (HIT) is a critical enabling tool that can advance quality improvement and safety and, eventually, achieve savings through better decision support for clinicians and patients, as well as enhance physician-patient communication. The vast majority of consumers believe that personal health records will improve the quality of health care (Markle Foundation, 2005). About one-third of adults report creating their own set of medical records so that their providers can have access to the information that the patients consider important (Kaiser Family Foundation/Agency for Healthcare Research and Quality, 2006). Consumers support the creation of a nationwide health information exchange for doctors and hospitals (Markle Foundation, 2005). A recent survey conducted for eHealth Initiative offers guidance on how healthcare providers should communicate to consumers about health information exchange: the message that appears to be the most salient to consum- ers is “having access to information in an emergency medical situation” (eHealth Initiative, 2007). In addition, they respond favorably to mes- sages from their doctors about the importance of electronic information exchange. Nevertheless, consumers are concerned about the privacy of their per- sonal health information. It is noteworthy that 73 percent of racial and ethnic minority respondents and 67 percent of those with a chronic illness expressed such concerns in a 2005 nationwide survey on health privacy (California HealthCare Foundation, 2005). Underscoring the value that they place in participating in HIT policy development, consumer organi- zations have set forth a set of principles to guide electronic information sharing that address transparency, access to and the use of personal health information, individual control, data security, and the enforcement of pri- vacy protections (Detmer and Steen, 2006). In addition, although consumer advocates appreciate the potential for HIT to facilitate data sharing, a broad consensus on the secondary uses of health information data remains to be achieved. In support of the more widespread adoption of HIT and in recognition of the criticality of consumer confidence in the system’s ability to protect personal health information, consumer organizations have been advocating for an overarching set of privacy and data security policies to govern federally funded and sanctioned HIT efforts.

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 PATIENTS Knowledge of EBM As noted earlier in this chapter, there are widespread challenges to the adoption of evidence-based health care. The American Institutes for Research (AIR) conducted focus groups on communication about EBM and found that improved safety and transparency are salient to consumers, although the terminology, in general, is not (Shore and Carman, 2006). A 2004 AARP survey of a nationally representative sample of Americans ages 50 years old and over found that the majority or respondents said that it was very important to them to have access to information that allows them to evaluate different prescription drugs on their effectiveness, safety, and cost (AARP, 2004). More than 80 percent also said that it was very important that pharmaceutical companies be required to publish informa- tion about the effectiveness of their medications for the treatment of specific conditions. A 2005 AARP survey of Hispanic New York City dwellers 18 years of age and older found that 90 percent said that it was “very impor- tant” (70 percent) or “somewhat important” (20 percent) for the state to provide access to information that compares the safety and effectiveness of prescription drugs (AARP, 2006). AIR’s work suggests that targeting certain types of consumers is a reasonable strategy because patients with chronic diseases are more likely to seek evidence than others. Effective messengers should thus be used to target certain types of consumers. Effective messengers are those who are considered objective and credible, as well as peers who share demographic characteristics or the same condition. In addition, organizations that are perceived to have a stake in the outcome (e.g., employers) should partner with other organizations to convey information on EBM. LEADERSHIP COMMITMENTS AND INITIATIVES Transformational Opportunities Through Collaboration Because multiple factors deter informed decision making, these obstacles must be removed to achieve reform. Most consumers do not have access to “good” information on treatment options or provider performance on which to base their healthcare decisions and rarely have enough informa- tion to make informed decisions (Demchak, 2007a). Even if information were available, many consumers do not have the requisite skills to apply it in their own best interest. Transformation from the status quo, in which health care is fragmented and provider focused, to a system of care that is coordinated and designed with the patient at its center will require major changes in every sector. By their very nature, the transformational oppor-

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2 LEADERSHIP COMMITMENTS TO IMPROVE VALUE IN HEALTH CARE tunities necessitate collaborative engagement and shared accountability. Acting alone, no stakeholder will likely attain the desired outcomes. First, to achieve the Roundtable’s objective of transforming the way in which evidence on clinical effectiveness is generated and used to improve health and health care, consumer organizations will have to join with other stakeholders to advocate for the establishment of an independent, public- private entity tasked with coordinating comparative effectiveness research whose analyses are objective and fully transparent. This will involve achiev- ing consensus on the structure and purpose of such an entity. Second, although there is already agreement among stakeholder groups for the need to promote an accountability and transparency agenda (ini- tially, using the existing body of evidence) that makes evidence-based infor- mation on cost and quality publicly available, more work needs to be done to improve the type and level of information. HIT—an essential enabling tool—will be integral to this transformation to facilitate access to and the dissemination of valuable information that is not now readily available. Promoting the widespread adoption of HIT with appropriate and effective protections for personal health information presents yet another opportu- nity for broad collaborative initiatives. Less advanced are efforts to support informed patient decision making. A transformation to a well-informed, highly motivated patient as the norm rather than the exception rests on helping patients become more active partners in their health, improving patient-physician communication, and revamping medical education curriculums to help providers recognize the need for them to become better aware of their patients’ decision-making skills and preferences. Medical education also needs to help physicians and other health professionals acquire motivational communications skills to increase consumer and patient engagement. Hibbard and colleagues (2004) have identified approaches to improv- ing patient activation. These include participatory rather than didactic pro- grams, family involvement, and the deployment of multiple rather than single strategies (Demchak, 2007b). Customized patient support programs that recognize an individual’s level of activation help people achieve self-efficacy through incremental successes. Providers can foster success by identifying their patients’ levels of activation and then tailoring their coaching and sup- port for patient self-management. Continued research to develop and test decision support tools for patients and educational and screening approaches for providers are needed and are areas ripe for cross-sector collaboration. Finally, the ultimate transformation to a healthcare system that is patient focused, better integrated, and better coordinated will require not only changes in the delivery of care but also the realignment of the provider payment system. To effect genuine change, payment must be aligned with

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 PATIENTS the desired outcomes. Ideally, reimbursement approaches will be episode based to reflect how patients actually experience care. NEXT STEPS Opportunities for Cross-Sector Collaborations The goal of this sector group is to ensure that health care is evidence based and that consumers benefit from a healthcare system that is continu- ously learning through clinical research. The desire is to foster improved communication between the physician and the patient to ensure that care is informed by the best evidence and that resources are allocated to research to expand the evidence base. Activities should build toward giving providers and patients a better understanding of the value of EBM and its contribu- tion to patient outcomes and improved quality. However, to enhance the likelihood of achieving success, it is important to have realistic expectations of the challenges of educating the public and to be mindful that, as yet, EBM is not well understood or widely accepted by consumers. Going forward, it is critical to ensure that patients are at the table dur- ing all activities, including setting priorities, formulating research questions, establishing the study design, and peer review of proposals. An agenda of transparency and public accountability among providers at all levels of the system must continue to be promoted, and the publication and dissemina- tion of information on comparative cost and quality must be continued. To better understand how the desired audiences may be reached, a more refined understanding of the audience segments is required, including the identifica- tion of criteria for prioritizing the audiences and the patient populations to be targeted for outreach and education. Further research on communica- tion approaches to reach mass audiences would help. Several recent com- munication initiatives may inform the development of the core messages, including the AHRQ and Ad Council campaign Questions Are the Answer, and several efforts by health plans (Aetna), the Joint Commission (Speak Up), and others. Communication and media specialists should advise on the development of a campaign strategy. The Roundtable has convened a workgroup to convene experts to offer guidance on how to proceed and is a useful and necessary point of departure. Consumers and patients will not fully accept HIT unless their privacy concerns are resolved. Finally, it will be necessary to identify and resolve issues of trust among collaborat- ing stakeholders, perhaps working with neutral third parties to convene conversations among drug and device makers and consumer advocates to develop better communication and collaboration and to clarify areas of agreement and disagreement.

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 LEADERSHIP COMMITMENTS TO IMPROVE VALUE IN HEALTH CARE In summary, consumer organizations have identified several areas in which cross-sector collaboration would accelerate change and in which each sector has an appropriate role to play. These include advocacy for an enhanced research capacity (including funding and training) to • determine the comparative effectiveness of all types of treatment and pharmaceutical interventions under different circumstances; greater transparency and the availability of comparative perfor- • mance information across all settings and collaboration with providers, plans, and employers to develop quality and efficiency measurement for public reporting; improved means of capturing clinical data to accelerate evidence • development, particularly on late effects and the effect on the general population after the initial demonstration of efficacy in controlled clinical trials; and the more widespread adoption of HIT that ensures secure data • sharing while protecting patient privacy. In addition, there are opportunities for consumers-employees to work with employers and purchasers to reach a consensus on the mutually accept- able use of EBM in benefit design, benefit tiering, and cost sharing and to collaborate with researchers on the design and testing of decision support tools to ensure that they meet consumer needs. Finally, work should be initi- ated to enlist increased media attention and engagement in EBM issues. REFERENCES AARP. 2004. Telephone survey. October. Washington, DC. ———. 2006. Survey of Hispanic New Yorkers, prescription drug affordability. Washington, DC. Agency for Healthcare Research and Quality. 2007. The national CAHPS benchmarking database. https://www.cahps.ahrq.gov/content/ncbd/ncbd_Intro.asp?p=105&s=5 (ac- cessed November 2007). Alliance for Better Health Care. 2007. U.S. House, Ways and Means Committee, Subcommittee on Health. Alliance for Better Health Care statement for the record on strategies to increase information on comparative clinical effectiveness, June 12. AQA Alliance. 2006. AQA principles for public reports on health care, April. http://www. aqaalliance.org/files/ConsumerPrinciplesMay06.doc (accessed November 2007). Berland, G., L. S. Morales, M. N. Elliott, J. I. Algazy, R. L. Kravitz, M. S. Broder, D. E. Kanouse, J. A. Munoz, J. Hauser, M. Lara, K. Watkins, H. Yang, J. A. Puyol, L. Escalante, J. Hicks, A. Griffin, K. Ricci, R. H. Brook, E. A. McGlynn. 2001. Proceed with caution: A report on the quality of health information on the Internet. Oakland, CA: California HealthCare Foundation and RAND Health. Blendon, R. J., M. Brodie, J. M. Benson, D. E. Altman, and T. Buhr. 2006. Americans’ views of health care costs, access, and quality. Milbank Quarterly 84(4):623-657. Brownlee, S. 2007. Giving patients a larger voice. The Washington Post, October 23, p. F4.

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 PATIENTS California HealthCare Foundation. 2005. National consumer health privacy survey—200. Oakland, CA. Centers for Medicare and Medicaid Services. 2007. National health expenditure accounts: Definitions, sources, and methods used in the NHEA 200. http://www.cms.hhs.gov/ NationalHealthExpendData/downloads/dsm-04.pdf (accessed September 2007). Davis, K., C. Schoen, S. Guterman, T. Shih, S. C. Schoenbaum, and I. Weinbaum. 2007. Slowing the growth of U.S. health care expenditures: What are the options? New York: Commonwealth Foundation. http://www.commonwealthfund.org/publications/ publications_show.htm?doc_id=449510 (accessed November 2007). Declerqc, E., C. Sakala, M. Corry, and S. Applebaum. 2006. Listening to mothers 2: Report of the second national survey of U.S. women’s childbearing experiences. New York: Childbirth Connections. Demchak, C. 2007a. Choice in medical care: When should the consumer decide? Issue brief 5. Washington, DC: AcademyHealth. ———. 2007b. The elusive health care consumer: What will it take to activate patients? Issue brief 2. Washington, DC: AcademyHealth. Detmer, D., and E. Steen. 2006. Learning from abroad: Lessons and questions on personal health records for national policy. Washington, DC: AARP. http://www.esi-bethesda.com/ ncrrworkshops/clinicalResearch/pdf/2006_10_phr_abroad_DED_AARP.pdf (accessed November 2007). Dubow, J. 2004. Adequate literacy and health literacy: Prerequisites for informed health care decision making. Washington, DC: AARP Public Policy Institute. eHealth Initiative. 2007. A majority of consumers favor secure electronic health information exchange. Washington, DC. Fraenkel, L., and S. McGraw. 2007. What are the essential elements to enable patient participa- tion in medical decision making? Journal of General Internal Medicine 22(5):614-619. Health Care Quality Leaders Join Forces. 2006. AQA and HQA collaborate to expedite national quality strategy. Press release. Washington, DC: Agency for Healthcare Research and Quality. http://www.ahrq.gov/news/press/pr2006/aqahqapr.htm (accessed November 2007). Hibbard, J., P. Slovic, E. Peters, and M. Finucane. 2000. Older consumers’ skill in using com- parative date to inform health plan choice: A preliminary assessment. Washington, DC: AARP Public Policy Institute. Hibbard, J., J. Dubow, and E. Peters. 2003. Decision making in consumer-directed health plans. Publication 2003-05. Washington, DC: AARP Public Policy Institute. Hibbard, J. H., J. Stockard, E. R. Mahoney, and M. Tusler. 2004. Development of the patient activation measure (PAM): Conceptualizing and measuring activation in patients and consumers. Health Services Research 39(4 Pt 1):1005-1026. Institute of Medicine. 2001. Crossing the quality chasm: A new health system for the 2st century. Washington, DC: National Academy Press. ———. 2004. Health literacy: A prescription top end confusion. Washington, DC: The National Academies Press. Kaiser Family Foundation/Agency for Healthcare Research and Quality/Harvard School of Public Health. 2004. National survey on consumers’ experiences with patient safety and quality information. Menlo Park, CA: Author. Kaiser Family Foundation/Agency for Healthcare Research and Quality. 2006. Update on consumers’ views of patient safety and quality information. Menlo Park, CA: Author. Kaiser Family Foundation/Health Research and Educational Trust. 2007. Survey of employer health benefits. http://www.kff.org/insurance/7527/upload/7527.pdf (accessed September 2007).

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 LEADERSHIP COMMITMENTS TO IMPROVE VALUE IN HEALTH CARE Kasper, J. F., A. G. Mulley, Jr., and J. E. Wennberg. 1992. Developing shared decision- making programs to improve the quality of health care. Quality Review Bulletin 18(6):183-190. Krughoff, R. 2007. Advancing value-driven health care. Paper presented at Third Annual Incentive and Rewards Symposium, Philadelphia, PA, May 15. Learning What Works Best. 2007. The nation’s need for evidence on comparative effec- tiveness in health care. http://www.iom.edu/Object.File/Master/43/390/Comparative% 20Effectiveness%20White%20Paper%20(F).pdf (accessed November 2007). Levinson, W., A. Kao, A. Kuby, and R. A. Thisted. 2005. Not all patients want to participate in decision making. A national study of public preferences. Journal of General Internal Medicine 20(6):531-535. Markle Foundation. 2005. Attitudes of Americans regarding personal health records and nationwide electronic health information exchange: Key findings from two surveys of Americans. New York, NY. O’Connor, A. M., F. Legare, and D. Stacey. 2003. Risk communication in practice: The con- tribution of decision aids. BMJ 327(7417):736-740. Office of New York State Attorney General Andrew M. Cuomo. 2007. Attorney general Cuomo announces agreement with Cigna creating a new national model for doctor rank- ing programs. Press release. Albany, NY. Peters, E., N. Dieckmann, A. Dixon, J. H. Hibbard, and C. K. Mertz. 2007. Less is more in presenting quality information to consumers. Medical Care Research and Review 64(2):169-190. Pronovost, P. J., M. Miller, and R. M. Wachter. 2007. The gap in quality measurement and reporting. JAMA 298(15):1800-1802. Regenstreif, D. I. 2005. Medicare’s cost crisis: Solutions are within our grasp. Health Affairs 24(Suppl 2):W5R90-W5R93. Robert Wood Johnson Foundation. 2007. Quality/equality survey results. Washington, DC: Lake Research Partners. Robert Wood Johnson Foundation-Aligning Forces for Quality. 2007. The regional market project—healthy markets, healthy people: Accelerating change. http://www.forces4quality. org/pdf/678.AF4QMeetingReport.finaldraft.pdf (accessed November 2007). Schoen, C., R. Osborn, M. M. Doty, M. Bishop, J. Peugh, and N. Murukutla. 2007. Toward higher-performance health systems: Adults’ health care experiences in seven countries, 2007. Health Affairs 26(6):w717-w734. Shore, K., and K. Carman. 2006. Communicating about evidence-based health care decision- making. Washington, DC: American Institutes for Research. Shortell, S. M., T. G. Rundall, and J. Hsu. 2007. Improving patient care by linking evidence- based medicine and evidence-based management. JAMA 298(6):673-676. Smith, R. 1991. Where is the wisdom . . .? BMJ 303(6806):798-799. U.S. Census Bureau. 2007. Health insurance. http://www.census.gov/hhes/www/hlthins/ hlthin06/hlth06asc.html (accessed September 5, 2007). U.S. Department of Health and Human Services. 2007. Automated usability test environ- ment (UTE) tool fact sheet. http://www.usability.gov/refine/UTEfactsheet.html (accessed November 2007). U.S. House Committee on Appropriations, Subcommittee on Military Construction, Veterans Affairs, and Related Agencies. 2007. Health care spending: Public payers face burden of entitlement program growth, while all payers face rising prices and increasing use of services. Report GAO-07-497T. Washington, DC: Government Accountability Office, February 15.