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Synopsis and Overview INTRODUCTION AND OVERVIEW The prosperity of a nation is tied fundamentally to the health and well-being of its citizens. It follows, then, that citizens—each one a past, current, or future patient—should represent both the healthcare system’s unwavering focus, and its fully engaged agents for change. This precept has several major implications. It means that the quality of health care should not be judged solely by whether clinical decisions are informed by the best available scientific evidence, but also by whether care accounts for a patient’s personal circumstances and preferences. It implies that careful listening should be the starting point for every patient encounter. And it suggests that the success of and innovations in healthcare delivery should depend on direct consumer engagement in the design of healthcare models and their aims. One of the central lessons of the Institute of Medicine (IOM) report Crossing the Quality Chasm: A New Health System for the 21st Century is that much of health care in the United States has lost its focus on the patient (IOM, 2001). Instead, the healthcare system has been designed and motivated primarily by the perspectives of its component facilities, companies, payers, and providers. Crossing the Quality Chasm urges that care be refocused around six aims: care should be safe, effective, patient- centered, timely, efficient, and equitable. In the decade since the report was published, it has become even clearer that citizen and patient engagement is central to taking advantage of advances in the personalization of care based on genetics, preferences, and circumstances. Building off the Chasm 1

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2 PATIENTS CHARTING THE COURSE report, a learning health system requires that patients help chart the course and operation of the learning process. In this context, the IOM, under the auspices of the Roundtable on Value & Science-Driven Health Care, focused the tenth workshop in its Learn- ing Health System series on public and patient engagement and leadership. This volume, Patients Charting the Course: Citizen Engagement and the Learning Health System, presents a summary of the issues and perspectives addressed at that meeting. As discussed by many participants in the meeting, most health systems today are not centered on patients. Instead, volume drives service; supply influences demand; and clinician—not patient—preferences shape practice (Wennberg et al., 2007). The notion of patient-centeredness often still feels unfamiliar, even disruptive, for many of those unexposed to the advantages of such a culture (Berwick, 2009). Patients have shown an interest in becoming more involved and learning more about their conditions. A Pew Research Center Survey found that 61 percent of adults go online to seek information on specific diseases, medical treatments, and other health subjects. Although the increased availability of health information is important, new communication approaches are needed to provide information that is reliable, relevant, and understandable so patients can make informed healthcare decisions. Data and information are a first step toward improving communica- tions between providers and patients. Providers will increasingly need to discuss with patients the risks and benefits of competing treatment op- tions and engage patients in shared decision making about their treatment choices. This represents a shift away from the historical model of medicine toward one in which physicians and patients work together to manage complex conditions, and make decisions on the basis not only of the best medical knowledge, but also the patient’s life circumstances, preferences, and personal biology. Recent legislative efforts and national interest around these issues have provided an important impetus for progress and prompted a reassessment of priorities and the articulation of practical next steps for developing a learning health system. The American Recovery and Reinvestment Act of 2009 (ARRA) included more than $1.1 billion to enhance the nation’s capacity for comparative effectiveness research and nearly $20 billion for the adoption and use of health information technology through the Health Information Technology for Economic and Clinical Health (HITECH) Act. Through incentives for the meaningful use of electronic medical records, the HITECH Act will encourage the adoption of electronic medical records by clinician practices and hospitals, which will enable improved access to clini- cal information, coordination of care across multiple healthcare settings, and a comprehensive record of a patient’s medical history. This will provide

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3 SYNOPSIS AND OVERVIEW the foundation for many aspects of the learning health system, including expanded clinical data for research, patient access to their own health infor- mation, and new models of care outside the traditional clinical encounter. Signed into law one week before the workshop, the Patient Protection and Affordable Care Act of 2010 (ACA) underscored the importance of patient choice and engagement, including provisions to promote choice, accountability, consideration of patient preferences, and shared healthcare decision making. As this law is implemented, new opportunities will be- come available for establishing innovative models to deliver care, creating incentives to coordinate and improve care quality and value, and expanding the clinical workforce. THE ROUNDTABLE AND THE LEARNING HEALTH SYSTEM SERIES The IOM Roundtable on Value & Science-Driven Health Care has since 2006,- provided a venue for health leaders from various stakeholder sectors—health professionals, patients, health system leaders, insurers, em- ployers, manufacturers, information technology, research—to work coop- eratively to address their common interest in improving the effectiveness and efficiency of health care. The Roundtable members have set the goal that, by 2020, 90 percent of clinical decisions will be supported by accu- rate, timely, and up-to-date information and will reflect the best available evidence. Over the past five years, the Roundtable’s Learning Health System series of workshops has identified and considered the key elements whose transformation can be central to achieving this goal: clinical research, clinical data, information technology, evidence standards, healthcare tools, caregiver culture, patient engagement, and financial incentives. For each of these elements, the workshops have explored priorities and approaches integral to harnessing interests and expertise across healthcare sectors to drive improvements in the value of medical care delivered in the United States. The following publications summarizing these workshops offer per- spectives on the issues involved, and identify priorities and projects in need of cooperative stakeholder engagement: • The Learning Healthcare System (2007) • Evidence-Based Medicine and the Changing Nature of Health Care (2008) • Leadership Commitments to Improve Value in Health Care: Finding Common Ground (2009) • Value in Health Care: Accounting for Cost, Quality, Safety, Out- comes, and Innovation (2010)

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4 PATIENTS CHARTING THE COURSE • Redesigning the Clinical Effectiveness Research Paradigm: Innova- tion and Evidence-Based Approaches (2010) • Clinical Data as the Basic Staple of Health Learning: Creating and Protecting a Public Good (2011) • The Healthcare Imperative: Lowering Costs and Improving Out- comes (2011) • Engineering a Learning Healthcare System: A Look at the Future (2011) • Learning What Works: Infrastructure Required for Comparative Effectiveness Research (2011) • Digital Infrastructure for the Learning Health System: The Foun- dation for Continuous Improvement in Health and Health Care (2011) In addition to the meeting series focused on exploring concepts and strategies for the learning health system, the Roundtable operates a series of Innovation Collaboratives, aimed at stewarding joint projects among organizations key to field advancement. Across the range of issues engaged in the Learning Health System workshops and the Innovation Collaboratives, greater public interest and patient engagement have emerged as essential and potentially transforma- tive elements for driving health system change. Empowering and supporting the public in these new roles requires the creation of a healthcare culture that supports continuous improvement and learning; elicits and considers public perspectives on key healthcare issues; and better characterizes needed partnerships, resources, tools, and communication approaches. Listed in the front of this publication are members of the IOM planning committee1 charged with guiding the development of a workshop to consider these issues in detail. The committee worked with IOM staff to develop the work- shop objectives and emphases and to plan the agenda. Box S-1 summarizes the motivating issues and objectives for the workshop. The planning committee designed day 1 of the workshop to focus on key elements of progress in science-driven health care—care culture, clinical research and the evidence process, clinical data, health information tech- nology systems—with specific attention to the role of patient engagement in the success of each. Day 2 was devoted to understanding opportuni- ties to develop the communications, culture, and incentives that will help in reorienting the focus and performance of a value- and science-driven health system. The workshop agenda is provided in Appendix A, speaker 1 Institute of Medicine planning committees are solely responsible for organizing the work- shop, identifying topics, and choosing speakers. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution.

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5 SYNOPSIS AND OVERVIEW BOX S-1 Motivating Issues and Objectives Motivating Issues • mplications of knowledge advances. Progress in medical science, basic re- I search, information technology, and operations research offers the potential for immediate, continuous, and transformative improvement in health care. In the context of increasing understanding of the importance of individual factors to patient outcomes, reaching health care’s full potential requires a reorientation to the patient. • erformance shortfalls. In terms of both effectiveness and efficiency, the nation’s P healthcare system is underperforming. The United States has the highest per capita health expenditures—twice the average for other developed countries— yet consistently rates no better than the middle tier of developed nations on such key indicators as infant mortality, life expectancy, and overall health system performance. • isconnects in core aims. The core aim of health care is improved outcomes: D to maintain or enhance patient status with respect to disease, injury, functional status, and sense of well-being. Yet often the system’s dominant characteristics are oriented more to clinician preferences or interests and economic rewards for volume over value. • nchor misalignment. The primary focus of care should be on outcomes rather A than service volume and on the interdependent aims of patient-centeredness, better science, better value, and continuous improvement. • mperative to make patients a central element. Efforts of the IOM and others I have underscored the necessity of making patient perspectives, preferences, and needs a strong, central focus of a learning health system, for several reasons, including: the basic fact that patients are the health system’s key focus and its agents for change, the fact that care has been shown to be more effective and efficient with more patient involvement, and the growth of preference-sensitive care as new interventions are developed. • mportance of communication. Central to progress are the communication I strategies necessary to inform and engage the public and patient communities as understanding advocates, partners, and change agents. Objectives • dentify the state of play with respect to the foundational elements of a learning I health system, the role of patients and the public in achieving progress on each element, and the most important priorities and policy levers for accelerating progress. • xplore and clarify the integral links among three key desired characteristics E of care: science-driven, patient-centered, and value-enhancing. • iscuss communication and public engagement strategies important to im- D proving the awareness and patient-focused action necessary for the transition to a learning health system.

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6 PATIENTS CHARTING THE COURSE biographical sketches in Appendix B, a listing of workshop participants in Appendix C, and an overview of common themes from each workshop in the Learning Health System series in Appendix D. This publication summa- rizes the workshop presentations and discussions and the issues addressed. Summaries of common themes and of the workshop presentations and discussions are provided below; further detail is provided in the main text. COMMON THEMES Representatives from the multiple healthcare sectors represented on the Roundtable participated in the workshop discussions. Although the perspectives brought to bear were diverse, the presentations and discus- sions shared a focus on the issues and challenges involved in moving to care centered on patients and their families, as envisioned by the Quality Chasm report. As noted by one workshop participant, such a focus means that “it is not about my condition—it’s about me.” During the workshop, a number of common themes emerged as participants discussed the importance of a patient-focused culture in addition to the content, structure, and function- ing of a patient-centered, learning health system. These themes are listed in Box S-2 and discussed in detail below. Listening. Each patient-clinician interaction starts with uninterrupted atten- tion to the patient’s voice on issues, perspectives, goals, and preferences. These patient views should then be used to guide clinical decisions, which often involve choices among multiple treatments that have both benefits and risks. Workshop participants reported that care often improved when staff and providers listened carefully to the concerns of patients and their families. Yet, it has been noted that physicians tend to interrupt patients within about 15 seconds of beginning to speak at the outset of the visit. On the other hand, an uninterrupted patient tends to conclude their remarks in under a minute (Beckman and Frankel, 1984). Listening fully to the patient, then, does not cause any significant delays in the physician’s schedule, and adds substantially to creating an environment where patients feel comfort- able sharing their health information. Achieving this goal will require a new focus on patient communication starting early in provider education to ensure that providers have the tools they need to share complex health information with patients and help them with these decisions. Participatory. Health outcomes improve when patients are engaged in their own care. In addition to improving health outcomes and patient adherence, participants noted that engagement can increase employee satisfaction and financial performance. People are eager to play a strong role in their own health care when given the right tools, as evidenced by the rapid uptake of

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7 SYNOPSIS AND OVERVIEW BOX S-2 Patient-Anchored Care: Common Themes • istening. Each patient-clinician interaction starts with uninterrupted attention L to the patient’s voice on issues, perspectives, goals, and preferences. • articipatory. Health outcomes improve when patients are engaged in their P own care. • eliable. All patients should expect proven best practice as the starting point R in their care. • ersonalized. With proven best practice as the starting point, science-based P tailoring is informed by personal biological traits, circumstances, and preferences. • eamless. Care delivered by multiple providers in multiple settings should be S fully integrated and seamless. • fficient. Patients, their families, and clinicians should expect care to be ap- E propriate to the need, available resources, and time required. • ccountable. All relevant aspects of the clinical experience, including patient A perspectives, should be captured and routinely assessed against expectations. • ransparent. Information on the outcomes of care—both effectiveness and T efficiency—should be readily accessible and understandable to patients and their families. • rustworthy. Patients should expect a strong and secure foundation of trust on T all dimensions—safety, quality, security, efficiency, accountability, and equity. • earning. In a learning health system, the patient is an active contributor to L and supporter of the learning process. Web 2.0 health information applications. Yet as one speaker mentioned, surveys indicate that only half of patients receive clear information on the benefits and trade-offs of the treatments under consideration for their condition. Patients’ involvement may be increased by providing them with additional information tools for learning about their health, helping them see the impact of their efforts, and acquainting them with new technologies with which to monitor their health and assist with lifestyle changes. Public participation is not limited to the clinic; the workshop highlighted new initiatives to provide access to health data and allow individuals to create new applications to improve their health. Reliable. Each patient should expect proven best practice as the starting point in their care. The current variability in medical practice impacts pa- tient care and results in uneven quality and safety for patients. Participants described tools that minimize this variation, such as dashboard displays that highlight the interventions that are due, done, or overdue and improve the consistency of the delivery of interventions to patients; other tech-

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8 PATIENTS CHARTING THE COURSE nologies that show promise include clinical decision support systems that present best practices to clinicians. Several participants also noted that, al- though technologies provide new opportunities, incentives, such as bundled payments and pay for performance, are needed to promote reliability and effectiveness in healthcare organizations and ensure accountability. Personalized. With proven best practices as the starting point, science-based tailoring is shaped by personal biological traits, genetics, circumstances, and preferences. Since the sequencing of the human genome was accom- plished, medical science has sought to personalize treatments to specific biological traits and genetics, in addition to personalizing care based on individual patient circumstances and preferences. This effort challenges the traditional approach of giving the highest priority to evidence gathered by means of large randomized controlled clinical trials, in which treatments are measured in a large population with a diverse genetic profile. Using multiple types of complementary evidence could better guide medical decisions and account for these personal factors. This new approach focuses on the ap- plicability of results to the clinic, rather than automatically giving priority to the results of randomized controlled trials. Seamless. Care delivered by multiple providers in multiple settings should be nonetheless expected to be fully integrated and seamless. As patients move among providers and settings, they often encounter communication problems, which may result in treatment errors and duplicative services. Participants described how team-based care offers the potential to rectify this disconnected care and limit human error. Effective teams are aided by an appropriate information technology infrastructure, which facilitates efficient and effective communication of health information. Encouraging the use of such teams will likely require the use of financial incentives, in- cluding bundled payments and payments that focus on outcomes; applying disincentives for poor outcomes, such as for preventable hospital readmis- sions; and creating incentives for delivery system reforms, including medical homes and accountable care organizations. Efficient. Patients, their families, and clinicians should expect care to be appropriate to need, resources, and time required. Participants under- scored the fact that currently, much of the care that is delivered is neither necessary nor efficient, with patients facing increasing out-of-pocket costs and lost time in the care process. This finding is not surprising given that the current incentive structure, focused on volume over value, encourages overuse and waste. As multiple participants noted, the United States spent roughly 17 percent of its gross domestic product on health care last year, yet this investment did not yield the health outcomes commensurate with

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9 SYNOPSIS AND OVERVIEW the costs. To gain greater value, many participants stressed that the costs and outcomes of care should be more transparent to patients, and new payment models—ranging from bundling payments for an entire episode of care, to pay-for-performance systems, to global payment—need to be implemented. Accountable. All relevant aspects of the clinical experience, including patient perspectives, should be captured and routinely assessed against ex- pectations. This information is vital not only to achieving effective patient management, but also to judging whether experiments with new delivery system models, payment incentives, or standards of care are having their intended effect on improving patient health and promoting efficiency. Measuring performance and disseminating innovations that work (and eliminating those that do not) constitute a systematic way of improving healthcare delivery. One presentation highlighted how this systematic ap- proach to improvement allowed the speaker’s organization to enhance care by conducting comprehensive reviews of interventions for different condi- tions, adopting the best practices identified by that review, and measuring the performance of the revised standard of care. Transparent. Information on the outcomes of care—both effectiveness and efficiency—should be readily accessible and understandable to patients and their families. Several speakers mentioned the frustration felt by patients regarding the lack of understandable information on the costs, quality, and outcomes of care, especially in light of reports about medical errors and the increasing personal burden of costs and inefficiencies of care. It was noted that, when offered a choice, patients do not routinely choose more costly or more intensive interventions. However, patients rarely have choice or information about alternatives. It is clear that infor- mation needed to improve value—better outcomes at lower cost—requires transparent information on the costs and outcomes of care. Trustworthy. Patients should expect a strong and secure trust fabric on all dimensions—safety, quality, security, efficiency, accountability, and equity. In few areas of human endeavor is trust on each of these dimensions more important. Yet one presenter noted that, even though 50,000 to 90,000 deaths per year are caused by medical errors, health care lacks the basic trust elements of transparency and accountability needed to drive improve- ments in quality and safety. In a learning system that draws lessons from each care experience, public trust must be bolstered in all aspects of the healthcare enterprise: equitable access to reliable clinician knowledge and skills, safeguards on clinical processes, the privacy and security of medical records, and the validity and safety of clinical trials.

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10 PATIENTS CHARTING THE COURSE Learning. In a learning health system, the patient is an active contributor to, and supporter of, the learning process. Each patient experience offers the potential to deepen the knowledge base that drives care quality and outcomes—at the individual, practice, and societal levels. A focus of the workshop was the stake of the patient in fostering a digital health utility that provides needed information to patients and their clinicians, ensures synchronization among providers, and generates knowledge for progress— for example, for comparative effectiveness insights, public health activities, or postmarket monitoring of approved technologies and drugs. Refer- ence was made, for example, to the need for a common core data set for electronic health record–based data that would allow reliable, platform- independent research across large patient populations. These are issues in which patients have a strong stake, and they must have confidence in the system’s functionality for the generation of timely and reliable new insights. Many participants stressed that meeting these important expectations will require new tools, a new culture, and new organizational structures. This transformation must start with patients’ involvement in their own medical care and their inclusion in decision making about the treatment that is best for them. Beyond individual patient decisions, workshop par- ticipants discussed the importance of including consumers in healthcare policy making at all levels—from hospital advisory committees to clinical trials—to ensure that all levels of the healthcare system consider patients at all times. PRESENTATION SUMMARIES The workshop presentations and discussions reviewed progress toward a learning health system; explored the links among the three key aims of care—science-driven, patient-centered, and value-enhancing; and identified priorities, policy levers, and public engagement strategies necessary to move forward. To provide context, the workshop began with keynote remarks by Harvey Fineberg, president of the IOM. He provided an overview of the current U.S. healthcare system and offered observations on the important framework and impetus for progress provided by the foundational elements of a learning health system in the context of the ACA. The Learning Health System in 2010 and to Come Dr. Fineberg addressed key challenges facing the U.S. healthcare sys- tem, drawing attention to the nation’s high expenditures on health care. The United States spends $7,500 per person on health care, yet life expec-

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11 SYNOPSIS AND OVERVIEW tancy, infant mortality, and system performance lag behind those of many developed countries that spend far less (OECD, 2009). In 2009 the United States spent $2.5 trillion on health care, which, as noted, represents nearly 17 percent of gross domestic product. In the coming years, expenditures are expected to continue to climb and life expectancy is expected to worsen if the healthcare system continues to function as it does today. A learning health system, as defined in the charter of the Roundtable on Value & Science-Driven Health Care, is a system designed to generate and apply the best evidence for care; provide evidence discovery as a natural outgrowth of patient care; and strive for innovation, quality, safety, and value in health care. In redesigning the health system to transition to this ideal, patients and the public must be engaged as active partners. Their perspectives are invaluable on topics ranging from how to personalize care and treatments to how to judge the value of care delivered. Despite the potential, evidence suggests that the system currently engages the public and patients in a limited fashion at the level of either the health system or individual healthcare decisions (Berwick, 2009; Sepucha and Barry, 2009; Zikmund-Fisher et al., 2010). Increased involvement of the public and patients is essential for progress toward a learning health system and greater value in health care. Passage of the ACA just 7 days before this workshop added momentum and urgency to transforming the health system. However, passage of this legislation alone will not accomplish this transformation; careful imple- mentation will be necessary to better orient health care toward science and value. In short, reform will be an ongoing process and evolve over time in response to changing national conditions. Sustaining these reform efforts will require the creation of a learning culture that nurtures systems and enables continuous learning, improvement, and innovation. Clinical Research, Patient Care, and Learning That Is Real-Time and Continuous A learning health system seeks to develop and continuously refine the evidence base needed for timely care, tailored to individual patient needs. However, the rapid pace of development of new therapies and ongoing evolution of existing treatment strategies create substantial, unmet demands on the research enterprise as current clinical research approaches require significant investments of time and resources but offer only static deter- minations of the average treatment effects on narrow and homogeneous populations (Greenfield et al., 2007). As a result, only a fraction of the many pressing clinical questions can be investigated, and research findings are limited in their timeliness and generalizability to real-world patient populations (IOM, 2009, 2011b).

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22 PATIENTS CHARTING THE COURSE fails to engage patients and support their active participation in manag- ing their own health, the nation will still fall short of its health goals. Tang illustrated how health information technology has been helpful in transforming the patient experience of a chronic disease such as diabetes. The Foundation provides patients with wireless glucometers that transmit glucose readings to its electronic health records system; the readings are then displayed on a diabetes dashboard and can be viewed and annotated by patients and providers. These data provide an important opportunity for patients and providers to actively monitor blood glucose and examine how it varies with daily diet, exercise, and medication regimens. Thus, patients have been able to learn how their behavior and decisions impact their health outcomes and improve their health conditions. Health and Disease Management Outside the Clinic Doors: There’s an App for That! Healthcare delivery continues to change to adapt to an aging popula- tion, increased prevalence of chronic conditions, genomic medicine, and information technology advances. Dorianne C. Miller, formerly of the Uni- versity of Chicago Medical School discussed three examples of innovative approaches to improve healthcare delivery by extending care outside of the clinical practice setting. The first example is a patient electronic health re- cords portal that facilitates communication between chronically ill patients and their providers and allows patients to store all of their health-related information together in a shared care plan. This system has increased pa- tients’ satisfaction with their clinical care and lowered costs by $3,000 per year for enrolled patients. Second is a web-based support group that allows patients to form a community that can support each member as well as provide information to the members’ clinical partners that may affect their care. Although results are not yet available, the program has drawn interest and highlighted the importance of addressing privacy and security for the participants. A final example is electronic provider visits, which extend the availability of primary care providers to care for nonurgent conditions and enhance patient–provider communications. An initial assessment of this program found that it reduced work absences, decreased costs, and lowered the number of times patients had to visit a physician’s office to solve their clinical problems. Barriers to broader adoption of these electronic applica- tions include the social acceptability of visiting doctors via the Internet, limited access to the Internet among certain groups, a lack of electronic health records in many physician practices, and unknown reimbursement for delivering care electronically.

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23 SYNOPSIS AND OVERVIEW Applying Evidence for Patient-Centered Care: Standards and Expectations Improving how evidence is communicated to patients is a critical chal- lenge that must be addressed in transforming the health system to one that is centered on patients’ individual values and preferences. Presenters of the papers included in Chapter 7 explored the added value of shared decision- making tools in helping patients decide among clinical options, ways to develop evidence that better meshes with individual patient needs, and methods for communicating evidence when the evidence base is uncertain. The Role of Evidence in Patient-Centered Care Regardless of whether the evidence available on treatment options is clear or uncertain, patient-centered care should ensure that “patient values guide all clinical decisions” (IOM, 2001). The current method for patient feedback—the informed consent process—falls short of the goal of helping patients understand risks and benefits to make informed decisions, accord- ing to Dale Collins Vidal of the Dartmouth Institute for Health Policy and Clinical Practice. Particularly when a patient faces treatment decisions not supported by adequate evidence or when treatment can impact a patient’s quality of life, both patient and provider would benefit from a more struc- tured decision-making process that supported informed patient choice, incorporating a discussion of treatment alternatives, the best evidence avail- able, and the patient’s personal values. An alternative to the current deci- sion model is shared decision making, a process that requires both patients and providers to contribute information and participate. Dartmouth has implemented shared decision making by deploying decision aids, conduct- ing surveys of patient preferences and reported health information, pro- viding feedback to patients about their health behaviors and conditions, and feeding forward information helpful to clinicians at the point of care. Results from experiments with shared decision making have shown its impact on treatment choices: 30 percent of patients changed their initial treatment preference, and the overall rate of surgery was 22 percent lower (Deyo et al., 2000). Further adoption of this patient decision model will require comprehensive training of healthcare providers, increased consumer health literacy, and the successful identification of implementation models. Evidence Standards and Application: Right Care, Right Patient, Right Time Evidence standards and their application to treatment decision mak- ing must account for specific clinical circumstances, individual variation, and the range of intervention types. As described by Clifford Goodman of The Lewin Group, evidence hierarchies and their application to patient

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24 PATIENTS CHARTING THE COURSE care have remained relatively constant despite incremental modifications. Although randomized controlled trials provide strong internal validity, overreliance on this experimental design is a critical limitation to getting the right care to the right patient at the right time. Goodman suggested the need to develop a diversity of evidence methodologies that are better tailored to specific research questions and account for real-world variations in indi- vidual circumstances, patients, and settings. An alternative evidence rating approach has been introduced by the Evaluation of Genomic Applications in Practice and Prevention initiative, which advocates a systematic process for evaluating genomic tests based on analytical validity, clinical validity, and clinical utility. Other promising approaches use multiple and comple- mentary methods to triangulate findings. Advances in evidence standards will require engaging the public on the nature of evidence, as well as fos- tering greater interaction among innovators, regulators, payers, and health technology assessment organizations with respect to evidence expectations. Translation and Communication Needs for Care in the Face of Uncertain Evidence Ensuring that patients are informed and active partners in health care requires effective approaches to translating and communicating evidence. Unfortunately, many health messages are delivered to the public in an overly brief and simplistic manner. Fran Visco of the National Breast Cancer Coalition reviewed the effects of this communication strategy in cases where evidence is uncertain. One illuminating case study is the controversy over the U.S. Preventive Services Task Force’s updated recommendations on breast cancer screening. One reason these recommendations generated such controversy is that they conflicted with previous communication campaigns that ignored the limitations of mammographic screening, and failed to ad- dress the uncertainty surrounding the evidence behind screening. Lessons learned from this case study include the need to be honest with patients about uncertainty; the role professional societies play in influencing clinical recommendations; and the need to better educate policy makers, the media, and the public about the importance of evidence. Team-Based Care and the Learning Culture A system in which health professionals work as individuals limits the coordination of care, prevents the flow of information, and discourages quality improvement. Therefore, a team-based culture is key to a learning health system and improved patient care. Presenters of the papers included in Chapter 8 addressed fundamental elements of team culture, ways to create and sustain an environment that fosters the pursuit of clinical excel-

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25 SYNOPSIS AND OVERVIEW lence and continuous improvement, and the use of teams to structure care transitions that are efficient and ensure that the right person is transferred in the optimal way. Practical Experience with Collaborative Models in the Health Professions Team-based care involves more than the coordination of individuals responsible for a patient’s care. According to Allan Frankel and Michael Leonard of Pascal Metrics, successful continuous learning environments link teamwork with improvement. Currently, few in health care methodically combine these elements, probably because of differences in the origins and backgrounds in teamwork training and improvement science. Teamwork training is based on a combination of psychology, sociology, and engineering while being heavily influenced by the science of human factors. In contrast, improvement science focuses on using statistics to manage variation in stable industrial processes and derives from the teachings of skilled statisticians and managers. Weaving these disciplines together is the responsibility, and a core function, of hospital leaders and healthcare managers. Frankel described several key barriers to the implementation of a col- laborative improvement model. First, the culture of medicine often has a hierarchical structure, whether based on academic stature, hospital– physician relationships, or other factors. Second, managers currently have limited appreciation of the components of a continuous learning environ- ment or how such an environment can be achieved. Finally, senior leaders must devise strategies and allocate resources to ensure that continuous learning systems thrive. Measures and Strategies for Clinical Excellence and Continuous Improvement Developing new models of collaborative care requires engaging all team members, including patients, in the development of evidence and its use to ensure that healthcare decisions are grounded in effectiveness, safety, and value. As noted by Joyce Lammert of the Virginia Mason Medical Center, this paradigm shift in the practice of medicine will require a fundamental change in the approach to learning and its application in providing health care—one that involves leveraging teams to support systems of clinical ex- cellence and continuous improvement. Rapid advances in science and tech- nology, as well as the complexity of twenty-first century care, have made old paradigms of learning and caring for patients obsolete. The necessary cul- ture change must start in medical school, with a focus on examining patient care processes. As much of the content of medical education will be out of date by graduation, more emphasis is needed on skills for lifelong learning,

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26 PATIENTS CHARTING THE COURSE such as how to ask the right questions and use information systems to ob- tain just-in-time answers that are evidence-based and reflect best practices. Similar changes may be needed on the organizational level and throughout residency training as well to encourage interdisciplinary and team-based practices. Finally, moving toward a learning health system will require other changes in such areas as recruiting, the practice environment, continuing education, and the payment structure. Care Cooperation and Continuity Across Clinicians, Facilities, and Systems Adverse events often occur during care transitions and too often result in hospitalizations, lower quality of care, and reduced patient satisfaction. Alice Bonner, formerly of the Massachusetts Department of Public Health (now Centers for Medicare & Medicaid Services) summarized work ongoing in Massachusetts to identify and quantify issues associated with care transi- tions and develop and implement a statewide strategic plan for addressing those issues. The goals of this strategic plan are to disseminate current knowledge about effective care transitions, summarize the state’s current projects on care transitions, and build consensus among stakeholders on the most important principles of care transition. Key lessons learned from this process include the importance of including the patient’s voice in the process, the need to engage stakeholders early to improve cooperation across institu- tions, and the importance of using evaluation measures to track progress. The plan is now being implemented, with workgroups refining and deploy- ing a statewide form and process for interfacility transfer, and education efforts on effective care transitions being initiated. Incentives Aligned with Value and Learning Transformative change of the health system will require incentives that are aligned with a learning health system. Incentives should focus on promoting value over volume, revamped payment schemes supporting sci- ence and value, and changes in insurance design. Presenters of the papers included in Chapter 9 provided examples of strategies that show promise for helping to realign the health system. Taken together, these papers offer key strategies that can contribute to a reengineering of the system. Paying for Value and Science-Driven Care If the current trajectory of healthcare spending continues, by 2020 the U.S. debt will reach 90 percent of the gross domestic product ratio (CBO, 2010). Michael Chernew of Harvard University argued that addressing this fiscal situation will require a focus on value and reduced growth in spend-

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27 SYNOPSIS AND OVERVIEW ing. Chernew discussed several incentive structures designed to promote value, from pay for performance, to episode-based bundled payments, to global payment. Although all of these approaches are promising, each has technical challenges that must be addressed before its widespread applica- tion can reduce the cost trajectory. In particular, each new payment model will require performance measurement that can account for new clinical evidence and healthcare innovation. Crucial determinants of success for these and future payment systems will be their capacity to contain costs, the way they incorporate quality and performance measures, their ability to incentivize patients appropriately, the availability of cost and quality information, and the way they encourage organizational reform. Generating Evidence to Guide Care Innovation in the American health system is driven by financial incen- tives that reward volume and provider revenue. According to Richard Gilfillan, formerly of Geisinger Health Plan, there are ample opportunities for improving the value for patients in the healthcare system. However, whether the system produces more or less value for patients depends on the industry’s business model. Gilfillan illustrated the impact of the current healthcare business model on innovation. Businesses proactively select in- novation and learning initiatives that promise to provide a positive return on investment. Businesses further avoid innovations that might threaten their future success; an example is hospitals traditionally avoiding programs designed to decrease readmissions. Therefore, changing healthcare practice will require changing the healthcare business model toward one that re- wards value. Gilfillan noted further that improvement will require multiple incentives, not just financial ones, as well as dissemination of best practices and leadership by clinicians and payers. Creating a Learning Culture Although financial incentives are clearly instrumental in transforming the health system, powerful nonfinancial incentives can be used to influence behavior and create a learning culture. Anne Weiss of The Robert Wood Johnson Foundation highlighted several of these nonfinancial incentives, from performance measurement, to technical assistance, to patient engage- ment. These incentives are central to the Aligning Forces for Quality strat- egy, which is currently being implemented in 17 regions across the country. Although still under development, the strategy has produced several insights into how to move toward a learning health system. First, health care is delivered locally, and different localities will have different needs. Second, strategic communication is critical to engage the general public, physicians,

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28 PATIENTS CHARTING THE COURSE patients, and employers in healthcare improvement. Third, progress will require participation by multiple stakeholders, from health system leaders to patients, each of whom has a role to play in measuring and improving quality. While the Aligning Forces for Quality project focused on non- financial means of creating a learning culture, such efforts are impeded by traditional payment systems that often punish learning and improvement, a fact that underscores the importance of reforming the payment system to reward quality and value. NEXT STEPS The workshop participants expressed optimism about building a learn- ing health system that focuses on patients and consumers. Although many barriers may hinder this transition, transformational change is within reach. Comments offered throughout the workshop highlighted the following key questions, many of which may be addressed through the convening capacity of the Roundtable, whose exploration offers opportunities for advancement in different healthcare sectors. Clinical Effectiveness Research • How do various research methodologies produce results that con- tribute to personalized treatments, real-time learning, and clinical relevance? Should the Roundtable and its Clinical Effectiveness Research Innovation Collaborative develop a new taxonomy of research approaches that advance these goals? • What steps can encourage greater patient involvement in the evi- dence process, from fostering participation in clinical trials, to initiating data collection for disease research, and developing appli- cations from existing data? Evidence Communication • How can the Roundtable and its Evidence Communications Inno- vation Collaborative encourage the development of best practices in health communications, whereby complex information is deliv- ered in simple and easy-to-understand formats? What steps can be taken to compile information on successful concepts, such as patient coaching, question checklists, and patient decision aids? • What steps can be taken to encourage the education system to teach students how to analyze health information as well as related concepts, such as how to gauge risks and benefits, in order to pro- mote broader health literacy?

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29 SYNOPSIS AND OVERVIEW • How can the Roundtable connect leaders from enterprises with expertise in consumer communications, such as media outlets and advertising, with health system leaders to transfer the lessons they have learned? • Given that the media are a key supplier of health information, what steps can be taken to enhance the health literacy of journalists so as to improve the information delivered to the public? • With more Americans obtaining health information from the Internet, how can the Roundtable encourage the development of websites with authoritative medical information for consumers? Best Practices • Given the benefits of engaging patients and families in their medical care, how might patient-centered care be encouraged throughout the medical system? • What steps can the Roundtable and its Best Practices Innovation Collaborative take to encourage the use of technologies, such as dashboard displays or procedure checklists, that reduce variability in care management and improve the reliability of the use of best practices? • What impediments prevent patient preferences and goals from be- ing considered in all care decisions? • Given the advantages of team-based care in promoting coordinated care and quality improvement, how can a team approach to care delivery be encouraged? Electronic Health Records • Developing a learning health system will require the use of clini- cal data as a reliable source for clinical research. How might the Roundtable and its Electronic Health Record Innovation Collab- orative encourage the development of standards and approaches to assure the quality of these data? • Since an effective health information utility was identified as a prerequisite for care coordination, continuous learning, and mea- surement of outcomes, what steps could the Roundtable and its Electronic Health Record Innovation Collaborative take to acceler- ate the adoption and use of such a utility? • Given the accelerated development of medical evidence, what might the Roundtable do to explore expanded decision support at the point of care?

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30 PATIENTS CHARTING THE COURSE Value • With the creation of new reimbursement incentives to promote value, how might the Roundtable and its Value Incentives Learn- ing Collaborative develop a framework for ongoing assessment of the efficacy of these reimbursement experiments with respect to increasing value? • What specific actions could be taken to reduce healthcare costs and increase value? What incentives are needed to encourage those actions? • What incentives, financial or otherwise, are needed to encourage providers to place greater emphasis on engaging patients in their care? REFERENCES Berwick, D. 2009. What “patient-centered” should mean: Confessions of an extremist. Health Affairs 28(4):w555-w565. Beckman, H. B., and R. M. Frankel. 1984. The effect of physician behavior on the collection of data. Annals of Inernal Medicine 101(5):692-696. Blumenthal, D. 2010. Launching HITECH. New England Journal of Medicine 262(5):382-385. Blumenthal, D., and M. Tavenner. 2010. The “meaningful use” regulation for electronic health records. New England Journal of Medicine 363(6):501-504. CBO (Congressional Budget Office). 2010. Analysis of the President’s 2011 budget: Letter from CBO director, Douglas W. Elmendorf to Daniel K. Inouye. http://www.cbo.gov/ ftpdocs/112xx/doc11231/03-05-apb.pdf (accessed February 7, 2011). Deyo, R., D. Cherkin, J. Weinstein, J. Howe, M. Ciol, and A. J. Mulle. 2000. Involving patients in clinical decisions: Impact of an interactive video program on use of back surgery. Medical Care 38(9):959-969. Fagerlin, A., K. R. Sepucha, M. P. Couper, C. A. Levin, E. Singer, and B. J. Zikmund-Fisher. 2010. Patients knowledge about 9 common health conditions: The DECISIONS survey. Medical Decision Making 30(5 suppl):35S-52S. FCC (Federal Coordinating Council for Comparative Effectiveness Research). 2009. Report to the President and Congress. http://www.hhs.gov/recovery/programs/cer/cerannualrpt. pdf (accessed October 11, 2010). Greenfield, S., R. Kravita, N. Duan, and S. H. Kaplan. 2007. Heterogeneity of treatment effects: Implications for guidelines, payment, and quality assessment. The American Journal of Medicine 120(4A):53-59. Hartzband, P., and J. Groopman. 2010. Untangling the web—patients, doctors, and the inter- net. New England Journal of Medicine 362(12):1063-1066. IOM (Institute of Medicine). 2001. Crossing the quality chasm: A new health system for the 21st century. Washington, DC: National Academy Press. ———. 2009. Initial national priorities for comparative effectiveness research. Washington, DC: The National Academies Press. ———. 2011a. Clinical data as the basic staple of health learning: Creating and protecting a public good: Workshop summary. Washington, DC: The National Academies Press. ———. 2011b. Learning what works: Infrastructure required for comparative effectiveness research: Workshop summary. Washington, DC: The National Academies Press.

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31 SYNOPSIS AND OVERVIEW NRC (National Research Council). 2009. Computational technology for effective health care: Immediate steps and strategic directions. Washington, DC: The National Academies Press. OECD (Organisation for Economic Co-operation and Development). 2009. OECD health data. http://www.oecd.org/health/healthdata (accessed February 7, 2011). Sepucha, K. R., and M. J. Barry. 2009. Making patient-centered cancer care a reality. Cancer 115(24):5610-5611. Tang, H., and J. H. Ng. 2006. Googling for a diagnosis—use of Google as a diagnostic aid: Internet based study. BMJ 333(7579):1143-1145. VanLare, J., P. Conway, and H. Sox. 2010. Five next steps for a new national program for comparative-effectiveness research. New England Journal of Medicine 362(11):970-973. Wennberg, J., A. O’Connor, E. Collins, and J. Weinstein. 2007. Extending the p4p agenda, part 1: How Medicare can improve patient decision making and reduce unnecessary care. Health Affairs 26(6):1564-1574. Woolley, M., and S. Propst. 2005. Public attitudes and perceptions about health-related research. Journal of the American Medical Association 294(11):1380-1384. Zikmund-Fisher, B. J., M. P. Couper, E. Singer, C. A. Levin, F. J. Fowler, S. Ziniel, P. A. Ubel, and A. Fagerlin. 2010. The DECISIONS study: A nationwide survey of United States adults regarding 9 common medical decisions. Medical Decision Making 30(5 suppl):20S-34S.

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