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Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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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

Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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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 Learning 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 communications between providers and patients. Providers will increasingly need to discuss with patients the risks and benefits of competing treatment options 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 clinical information, coordination of care across multiple healthcare settings, and a comprehensive record of a patient’s medical history. This will provide

Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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the foundation for many aspects of the learning health system, including expanded clinical data for research, patient access to their own health information, 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 become 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, employers, manufacturers, information technology, research—to work cooperatively 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 accurate, 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 perspectives 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, Outcomes, and Innovation (2010)
Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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  • Redesigning the Clinical Effectiveness Research Paradigm: Innovation 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 Outcomes (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 Foundation 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 transformative 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 workshop 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 technology systems—with specific attention to the role of patient engagement in the success of each. Day 2 was devoted to understanding opportunities 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

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1 Institute of Medicine planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution.

Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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BOX S-1
Motivating Issues and Objectives

Motivating Issues

  • Implications of knowledge advances. Progress in medical science, basic research, 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.
  • Performance shortfalls. In terms of both effectiveness and efficiency, the nation’s 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.
  • Disconnects in core aims. The core aim of health care is improved outcomes: 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.
  • Anchor misalignment. The primary focus of care should be on outcomes rather than service volume and on the interdependent aims of patient-centeredness, better science, better value, and continuous improvement.
  • Imperative to make patients a central element. Efforts of the IOM and others 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.
  • Importance of communication. Central to progress are the communication strategies necessary to inform and engage the public and patient communities as understanding advocates, partners, and change agents.

Objectives

  • Identify the state of play with respect to the foundational elements of a learning 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.
  • Explore and clarify the integral links among three key desired characteristics of care: science-driven, patient-centered, and value-enhancing.
  • Discuss communication and public engagement strategies important to improving the awareness and patient-focused action necessary for the transition to a learning health system.
Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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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 summarizes 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 discussions 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 functioning 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 attention 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 comfortable 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

Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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BOX S-2
Patient-Anchored Care: Common Themes

  • Listening. Each patient-clinician interaction starts with uninterrupted attention to the patient’s voice on issues, perspectives, goals, and preferences.
  • Participatory. Health outcomes improve when patients are engaged in their own care.
  • Reliable. All patients should expect proven best practice as the starting point in their care.
  • Personalized. With proven best practice as the starting point, science-based tailoring is informed by personal biological traits, circumstances, and preferences.
  • Seamless. Care delivered by multiple providers in multiple settings should be fully integrated and seamless.
  • Efficient. Patients, their families, and clinicians should expect care to be appropriate to the need, available resources, and time required.
  • Accountable. All relevant aspects of the clinical experience, including patient perspectives, should be captured and routinely assessed against expectations.
  • Transparent. Information on the outcomes of care—both effectiveness and efficiency—should be readily accessible and understandable to patients and their families.
  • Trustworthy. Patients should expect a strong and secure foundation of trust on all dimensions—safety, quality, security, efficiency, accountability, and equity.
  • Learning. In a learning health system, the patient is an active contributor to 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 patient 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-

Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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nologies that show promise include clinical decision support systems that present best practices to clinicians. Several participants also noted that, although 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 accomplished, 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 applicability 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, including bundled payments and payments that focus on outcomes; applying disincentives for poor outcomes, such as for preventable hospital readmissions; 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 underscored 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

Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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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 expectations. 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 approach to improvement allowed the speaker’s organization to enhance care by conducting comprehensive reviews of interventions for different conditions, 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 information 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 improvements 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.

Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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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. Reference 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 participants 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 system, 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-

Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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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 implementation 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 determinations 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).

Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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Presenters of the papers included in Chapter 2 considered key strategies for expanding capacity and improving the volume, level, and applicability of clinical research. These strategies include developing the infrastructure and methods necessary for comparative effectiveness research, harnessing integrated healthcare delivery systems as platforms for research in real-world care settings, and engaging patients as full partners in the research enterprise.

Comparative Effectiveness Research: Patient, Clinician, and Policy Needs

By focusing on health outcomes and the information needs of patients, clinicians, and policy makers, comparative effectiveness research may improve the utility of all clinical research for guiding care decisions (FCC, 2009; IOM, 2009). Departing from the traditional, investigator-driven research paradigm, the priorities and study designs of comparative effectiveness research must reflect routine practice settings and the heterogeneity of real-world patient populations. As noted by Patrick Conway, formerly of the Office of the Secretary of Health and Human Services, this type of research provides an opportunity to take better advantage of health information technology and innovative research methods. Ensuring the success of comparative effectiveness research efforts will depend on improving the translation of its evidence into health outcomes through improved adoption and dissemination interventions as well as enhanced efforts to evaluate and publicly report the impacts of research investments.

The ARRA and ACA provided funding and expanded capacity for the entire comparative effectiveness research enterprise. To guide the investment of a portion of these new research funds, the Federal Coordinating Council for Comparative Effectiveness Research developed prioritization criteria for scientifically meritorious research, as well as a strategic framework outlining core research components (research, human and scientific capital, data infrastructure, dissemination, and translation) and priority themes (populations, conditions, and intervention types).2 Key initial investments include the development of data infrastructure, encompassing, for example, claims data, clinical data networks, and patient registries, as well as efforts to enhance information dissemination and use. In addition to discussing the work of the Coordinating Council, Conway suggested several next steps as important to ensure maximal impact and sustainability of the Patient-Centered Outcomes Research Institute (PCORI) created under the ACA: (1) develop an overall funding strategy, informed by clinicians,

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2 The Coordinating Council recommended priorities for the comparative effectiveness research funds provided to the Office of the Secretary of Health and Human Services ($400 million). The ARRA also allocated comparative effectiveness funds to the National Institutes of Health ($400 million) and the Agency for Healthcare Research and Quality ($300 million).

Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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patients, and a stakeholder advisory board; (2) establish priority topics, and evaluate the current state of knowledge about each; (3) select research methods that will best address existing knowledge gaps; (4) strive for a balanced portfolio of high-impact research topics; and (5) evaluate progress, and report back to the public (VanLare et al., 2010).

Health Systems as Research Platforms: Enhancing Science, Value, and Innovation

Electronic health records and other health information technology (IT) tools have become commonplace in many large healthcare delivery organizations. The resulting increase in clinical and health data presents an opportunity to conduct research that better reflects clinical practice and is relevant to real-world patients and settings. The research enabled by health IT includes research on comparative effectiveness, health services, patient preferences, surveillance of pharmaceuticals and other therapeutics, and population health.

To illustrate the potential of better integrating health systems into the national research enterprise, John Noseworthy and Sherine Gabriel of Mayo Clinic offered several examples of Mayo’s use of clinical data to improve the safety and effectiveness of medical care. One such example, the Rochester Epidemiology Project, creates a common data resource for the study of health and illness that is large enough to facilitate routine and passive population-based research. Taking a similar approach, the Total Joint Registry supports comparative analysis of surgical techniques and implant types—including consideration of patient demographics and comorbid conditions—with respect to long-term outcomes. A third example is the Warfarin Project, which implements a standardized, rule-based algorithm for administration of this anticlotting agent and improves the algorithm through surveillance, performance data, and user feedback.

Taking a more disruptive approach, the proposed High Value Healthcare Initiative would focus on improving the value of care by benchmarking the quality and costs of best practices over time, implementing models for evidence-based best practice and shared decision-making, and studying new reimbursement approaches that would better align payments with patient care outcomes. As a final example, the Enterprise Data Trust is a centralized repository for the management, integration, and sharing of information collected during care delivery—including biospecimen-related and phenotypic data—with the data being used to inform and improve future care.

Collectively, these examples suggest several key characteristics for a knowledge-driven healthcare delivery system of the future: patient-centeredness with a strong focus on quality and coordination of care;

Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
×

information-enabled practice with real-time data and feedback available to providers at the point of care; a culture of collaboration, innovation, and translation of scientific knowledge into improved health for patients and communities; health information technology systems that are integrated, standardized, and interoperable; and a focus on high-value care.

Enhancing the Culture of Patient Contributions to Learning in Health Care

A learning health system is characterized by real-time and continuous knowledge generation, with patients actively engaged in the research enterprise. The patient-centered focus of comparative effectiveness research and the increased capability of health systems to use course-of-care data for learning foreshadow expanded opportunities for patients and the public to contribute to advancing knowledge. Diane Simmons and Kenneth Getz of the Center for Information and Study on Clinical Research Participation reviewed key opportunities to foster a culture supportive of greater public and patient engagement in learning in health care.

One measure of public engagement in healthcare learning is public confidence and trust in the clinical research enterprise, which has eroded over the past decade as has public awareness of and appreciation for study volunteers (Woolley and Propst, 2005). These trends are reflected in research participation rates, with enrollment dropping from 75 percent in 2000 to 59 percent in 2006 despite a concurrent 12 to 14 percent spending increase recruiting clinical trial volunteers. It may be possible to reverse this trend by examining the common motivations for research participation. According to a survey of study volunteers, key drivers for sustained participation include the need to take control of one’s medical condition and well-being, the desire to develop personal relationships with study staff, a feeling of being treated appropriately throughout the study, and the knowledge that participation will make a difference.

Based on the work of the Center for Information and Study on Clinical Research Participation, bolstering public confidence and trust could be accomplished through programs that (1) increase appreciation for study volunteers and illustrate the value of clinical research to the public health; (2) repair the credibility of research sponsors, study staff, and professionals responsible for regulating the research enterprise and protecting human subjects; and (3) engage the public as partners in the development of new medical and health advances.

Clinical Data as a Public Good for Discovery

Essential to a dynamic research enterprise is the broad availability of quality clinical and health data. Currently, data are scattered across the

Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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healthcare system in siloed repositories, representing substantial but latent resources for advancing a variety of research streams, including drug discovery, comparative effectiveness, quality improvement, and public health surveillance (IOM, 2011a; NRC, 2009). Efforts now under way to create infrastructure for data capture, linkage, and information sharing will help make clinical data a public good. Presenters of the papers included in Chapter 3 reviewed the wide array of needs and potential uses for data in a learning health system, opportunities to better utilize data generated through public investment, and strategies to improve data integrity and develop a culture supportive of the application of the broad range of available data resources for progress in health care.

Information Needs for the Learning Health System

The Office of the National Coordinator for Health Information Technology (ONC) aims to improve health and health care through the appropriate use of information technology. Initial work has focused on encouraging broad adoption and use of electronic health records through Centers for Medicare & Medicaid Services (CMS) payment incentives so as to achieve measurable improvements in the quality, safety, and efficiency of health care. Farzad Mostashari of ONC reported on what is needed to attain a secondary goal of electronic health records: contributing to a learning health system and serving as a means for understanding and influencing other key functions such as public health, care quality, drug discovery, and clinical effectiveness research.

Current efforts to develop independent systems for these purposes are using different architectures and approaches, which poses two significant challenges to the creation of a unified, multipurpose digital infrastructure: sharing data and designing the system. Accelerating data sharing will require the creation of a limited care data set, developed from collaboration among key data users that can meet the key needs for each community. Although such an approach will not immediately satisfy all data needs of all users, it is a necessary starting point for the development of a national infrastructure that is not saddled with burdensome and excessive data demands. To meet the broader needs of each research community, the core data set should be accompanied by deeper data collection when appropriate and relevant to the circumstances. Discussing system design, Mostashari highlighted the potential benefits of creating a distributed rather than a centralized infrastructure. In the context of the fragmented and heterogeneous U.S. healthcare system, a distributed approach is likely to produce a more resilient, feasible, cost-effective, and privacy-protective infrastructure.

Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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Opening Access to High-Value Data Sets

The vast stores of data captured by the agencies of the Department of Health and Human Services (HHS) are an important national resource for enhancing value, the science base, and the patient experience. Todd Park, HHS’s chief technology officer, provided an overview of efforts to open access to these data as part of the White House’s Open Government Initiative. Existing data from HHS agencies such as the Agency for Healthcare Research and Quality (AHRQ), CMS, the Food and Drug Administration (FDA), and the National Institutes of Health (NIH) are a tremendous public good, yet the data cannot produce transformative change without additional efforts to stimulate their use and improvement. HHS therefore is seeking to develop a data ecosystem in which an array of users can access the data supplied by HHS and others, providing opportunities for users to develop new methods for the data’s display or application in ways that improve the health of U.S. communities.

The data ecosystem concept has been tested through the Community Health Data Initiative, which seeks to help Americans better understand and take action to improve local healthcare performance. The promise of this approach has been demonstrated in the Initiative’s initial meetings and has led to the development of several applications that use data to improve understanding of national and community health issues, as well as areas for their improvement. Park encouraged additional input from the public, noting that although HHS data are useful now, their quality and utility will improve dramatically as new uses and needs for the data are developed.

Ensuring Data Integrity: Addressing Privacy Protection and Proprietary Concerns

Although Americans strongly favor legitimate biomedical, public health, and health services research, current policy does not promote access to patient data for such research. Don Detmer of the University of Virginia noted the need for new policies that expand data availability and reduce data collection costs while ensuring the privacy and security of personal health information.

Current policy places the burden of collecting clinical data on researchers, creating significant disincentives for clinicians and investigators to pursue promising lines of enquiry. To address this misalignment, Detmer proposed several policies for promoting research while protecting data security, including (1) creating a unique personal health identifier, with the ability for patients to opt out; (2) providing the availability of genetic information for research, with the ability for patients to opt out; (3) sharing clinical data for research, with the ability for patients to opt

Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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out; and (4) developing a public–private collaboration for engaging citizens who wish to participate in clinical research studies. These policies would give the public the option of becoming full and open participants in a learning health system while ensuring that patients retain the ability to choose whether they want their health data shared for research purposes.

Engaging Patients to Improve Science and Value in a Learning Health System

Patients bring unique and important perspectives as well as personal agency to health care—elements essential to closing important gaps in health system performance and health management, and ensuring the effectiveness of care received. Unfortunately, patients too often are not engaged as meaningful decision makers in their own care or as partners in health research. As illustrated by the papers included in Chapter 4, the vision for a learning health system takes a broader view by making informed patients a central system goal. Achieving this goal requires medical evidence to be presented to patients in a form that is understandable and actionable, based on patient preferences, expectations, health concerns, and health literacy. Building on the foundation of an informed patient, patient engagement strategies also seek to improve collaboration, respect, and participation. As emphasized in these presentations, once engaged, patients serve as a powerful driver for enhancing value in health care by improving research, health system effectiveness, safety, outcomes, and the quality of care decisions.

Investing Patients in the Research and Continuous Improvement Enterprise

Patients can be engaged as full partners in research if learning transforms health care to better serve the needs and interests of individuals, families, and communities. Sharon Terry of the Genetic Alliance offered a vision for the range of contributions patients and the public can make to improve research through better use of clinical data and health information. These patient-initiated data collection efforts have established biological repositories and clinical registries that provide important resources for research and discovery. Other efforts include social networks and sites that enable the aggregation and sharing of health information, such as PatientsLikeMe®, Love/Avon Army of Women, and Facebook health groups, as well as genetics-based initiatives such as the Genetics for Early Disease Detection and Intervention to Improve Health Outcomes program at the Centers for Disease Control and Prevention. This ongoing work indicates increased public interest in participating in one’s own care, and that expanded participation will accelerate learning in the health system.

Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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Public and Patient Strategies to Improve Health System Performance

Numerous policy statements from the public and private sectors speak to the importance of engaging patients, their families, and their communities in improving health and the experience of health care. However, no widely embraced framework exists for defining patient engagement. James B. Conway of the Institute for Healthcare Improvement proposed a two-dimensional taxonomy for such initiatives based on the chain of effect for quality (environment, organization, microsystem, and experience of care), grouped according to the elements of the Institute for Family Centered Care’s definition of patient- and family-centered care (respect, information, participation, and collaboration). Although only an initial attempt, the framework provides support for the design, measurement, assessment, and improvement of various interventions seeking to enhance different aspects of engagement.

This overarching framework underscores the importance of involving patients in their health. Decades of work illustrate the powerful potential of greater patient and public engagement to improve health system performance, including improved adherence, reduced malpractice risk, decreased adverse events, and increased employee retention. This research supports the notion that health systems can be dramatically better if staff and leaders listen to and engage with patients and families. A second, related theme from Conway’s presentation was that engaging patients and their families promotes improvements not just for one patient but also for all patients. Both themes highlight the benefits of transforming the health system by organizing it around the patient and the public.

Communicating with Patients About Their Concerns, Expectations, and Preferences

Although the necessary course of action is clear for some situations in medicine, a surprising number of clinical decisions require choice among multiple diagnostic or treatment options. According to Karen Sepucha of Massachusetts General Hospital, a high-quality choice among competing care approaches requires effective communication between patients and providers about the potential benefits and risks of each option, as well as consideration of a patient’s expectations, health concerns, goals, and personal preferences. However, the patient experience often falls short of this ideal. In general, patients are not meaningfully involved in the decision-making process, and providers do not explore patient health goals or preferences that might influence a decision (Zikmund-Fisher et al., 2010). In addition, patients receive poor information. According to one

Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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study, just half of patients were aware of the advantages and disadvantages of the treatment or intervention under consideration, and fewer than half were able to answer correctly more than one of four to five questions about those treatments (Fagerlin et al., 2010).

These quality gaps in decision making have implications for health outcomes, patient satisfaction, and the overall value of care received. In the case of elective surgery, for example, informed patients were 25 percent less likely to choose surgery, a finding that suggests that one in four patients may be receiving unwanted care. Sepucha also reviewed existing efforts to promote shared decision making through provider training to improve communication and decision coaching skills in addition to patient coaching to facilitate discussions with providers about patient preferences and concerns. Also discussed were patient decision aids, which have been demonstrated to increase patients’ knowledge and perceptions of risk as well as improve a patient’s desire to participate in decisions (Sepucha and Barry, 2009). Improved use of these tools requires new incentives, as well as changes in the organizational structure to include patients in care decisions.

Health Information Technology as the Engine for Learning

Presenters of the papers included in Chapter 5 reviewed trends and strategies for health information technology adoption and how the necessary infrastructure can be developed as a knowledge engine, a tool for care improvement, and a portal for practical patient engagement.

Meaningful Use of Health Information Technology

David Blumenthal, formerly of ONC (now Harvard University), stressed that health information technologies, particularly electronic health records, need to be adopted more broadly if they are to contribute to learning and science-driven care. “Meaningful use” denotes an early incentive to drive adoption, with additional incentives needed for further dissemination. Dr. Blumenthal provided an update on federal efforts to create a health information technology environment based on routine, continuous learning (Blumenthal and Tavenner, 2010). Building on ONC’s statutory responsibilities under the Health Information Technology for Economic and Clinical Health Act, ONC is focusing on the nationwide exchange of health data and establishing a digital data infrastructure (Blumenthal, 2010). As the data infrastructure is built, privacy issues will need to be addressed in order to ensure access to data for research and assuring the public that their personal health information is protected.

Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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New Classes of Data, New Opportunities to Learn

Emerging classes of healthcare data are providing new ways to measure various aspects of health care and to improve healthcare delivery, as well as translational and clinical research. Daniel R. Masys, Jack M. Starmer, and Jill M. Pulley of the Vanderbilt University School of Medicine described three examples of these data sources. The first example presents data in a novel way through dashboard displays, or real-time presentation of data, to indicate which care measures are due, done, or overdue. These displays have proved more effective than computerized alerts for individual care measures. As a second example, the Electronic Medical Records and Genomics Network uses electronic medical records to verify previous genetic studies and to discover new genetic effects with phenome-wide scanning. A final example is Vanderbilt University’s patient portal MyHealthAtVanderbilt, which supports patient and clinician communication, appointment scheduling, and access to lab results. It also acquires data on health outcomes that are seldom recorded, such as the unexpected beneficial effects of newly prescribed medications. Each of these three examples illustrates how different sources of data can be used to create a learning health organization and inform both research and care.

Web 2.0 and Patient Engagement

Health information technology is helping to bridge the gap between patients and providers by enabling communication and interaction beyond the typical clinical encounter. Kemal Jethwani and Joseph Kvedar from the Center for Connected Health at Partners HealthCare discussed the use of technology to deliver patient care outside the hospital or doctor’s office, help patients monitor their health status, and obtain relevant feedback and coaching to achieve the best possible outcomes. As an example, the Connected Cardiac Care Program enrolls heart failure patients for intensive monitoring using a weight scale, blood pressure cuff, and pulse oximeter; the patient’s data are reviewed by a nursing team that recommends follow-up care by a cardiologist if they notice concerning changes. Since the start of this program, readmission rates have been halved, and patients have reported higher awareness of how to better manage and control their conditions. Lessons learned from this and similar disease management programs include the benefits of patient engagement tools, such as consistent and meaningful feedback, coaching, and increased communication with providers, in changing patient behavior to meet clinical goals.

Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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Patients, Clinical Decisions, and Health Management in the Information Age

The availability of health information has grown tremendously with websites, blogs, discussion groups, and forums providing ready access to information for those curious about their own or their family’s health problems. Although in general the increased abundance of information is positive, it brings several challenges. Most notably, patients now must sort through a plethora of information and judge what is reliable and what is not. Patients can easily be misdirected on the Internet, where numerous sites of uncertain benefit and possible harm abound (Tang and Ng, 2006). Likewise, when test results are provided electronically with no context, patients may be puzzled or disturbed by results that deviate from the normal range and assume the worst possible diagnosis (Hartzband and Groopman, 2010). Presenters of the papers included in Chapter 6 provided an overview of the current digital health infrastructure, ranging from health information posted online to health monitoring technologies for improving care.

Public and Patient Information Access and Use as a Core Care Component

The Internet has dramatically transformed the quantity and convenience of health information available to the public, offering users a wide range of resources from which to choose. As noted by George L. Lundberg, editor-in-chief of Cancer Commons, most patients now receive the majority of their new medical and health information from the Internet, with many accessing the information after visiting their physician to learn more about diagnoses and findings. This represents an important opportunity for physicians to deliver information to patients who are motivated and primed to learn by helping them find relevant, reliable information. In addition to making existing information more broadly available, the Internet is promoting faster translation of research through open-source science. Lundberg presented one example, the Cancer Commons, a rapid learning community focused on real-time translational cancer research and personalized oncology. These types of applications seek to build on the genomics and molecular medicine revolution while reducing the time from initial observation to successful implementation.

Health Information Technology–Based Approaches to Health Management

Through the provision of real-time information and feedback, health information technology has contributed to changing physician behavior and improving overall health system performance. However, as observed by Paul Tang of the Palo Alto Medical Foundation, if the technology

Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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fails to engage patients and support their active participation in managing 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 population, increased prevalence of chronic conditions, genomic medicine, and information technology advances. Dorianne C. Miller, formerly of the University 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 records 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 patients’ 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 applications 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.

Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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Applying Evidence for Patient-Centered Care: Standards and Expectations

Improving how evidence is communicated to patients is a critical challenge 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, according 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 structured decision-making process that supported informed patient choice, incorporating a discussion of treatment alternatives, the best evidence available, and the patient’s personal values. An alternative to the current decision 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, conducting surveys of patient preferences and reported health information, providing 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 making 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

Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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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 individual 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 complementary methods to triangulate findings. Advances in evidence standards will require engaging the public on the nature of evidence, as well as fostering 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 address 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-

Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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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 collaborative 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 environment 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 excellence and continuous improvement. Rapid advances in science and technology, as well as the complexity of twenty-first century care, have made old paradigms of learning and caring for patients obsolete. The necessary culture 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,

Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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such as how to ask the right questions and use information systems to obtain 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 transitions 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 institutions, and the importance of using evaluation measures to track progress. The plan is now being implemented, with workgroups refining and deploying 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 science 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-

Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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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 application 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 incentives 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 innovation 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 rewards 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 engagement. These incentives are central to the Aligning Forces for Quality strategy, 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,

Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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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 nonfinancial 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 learning 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 contribute 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 evidence process, from fostering participation in clinical trials, to initiating data collection for disease research, and developing applications from existing data?

Evidence Communication

  • How can the Roundtable and its Evidence Communications Innovation Collaborative encourage the development of best practices in health communications, whereby complex information is delivered 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 promote broader health literacy?
Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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  • 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 being 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 clinical data as a reliable source for clinical research. How might the Roundtable and its Electronic Health Record Innovation Collaborative 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 measurement of outcomes, what steps could the Roundtable and its Electronic Health Record Innovation Collaborative take to accelerate 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?
Suggested Citation:"Synopsis and Overview." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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Value

  • With the creation of new reimbursement incentives to promote value, how might the Roundtable and its Value Incentives Learning 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?

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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).

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As past, current, or future patients, the public should be the health care system's unwavering focus and serve as change agents in its care. Taking this into account, the quality of health care should be judged not only by whether clinical decisions are informed by the best available scientific evidence, but also by whether care is tailored to a patient's individual needs and perspectives. However, too often it is provider preference and convenience, rather than those of the patient, that drive what care is delivered. As part of its Learning Health System series of workshops, the Roundtable on Value & Science-Driven Health Care hosted a workshop to assess the prospects for improving health and lowering costs by advancing patient involvement in the elements of a learning health system.

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