Patients Charting the Course Citizen Engagement and the Learning Health System: Workshop Summary (2011) / Chapter Skim
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Synopsis and Overview
Pages 1-32
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Crossing the Quality Chasm urges that care be refocused around six aims: care should be safe, effective, patientcentered, 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.
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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.
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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.
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• 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)
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• 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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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.
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• earning. In a learning health system, the patient is an active contributor to L and supporter of the learning process.
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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.
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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.
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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.
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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)
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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)
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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.
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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.
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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.
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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)
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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.
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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.
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, 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.
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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.
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. 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.
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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.
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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)
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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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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.
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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.
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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.
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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.
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• 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.
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:35S-52S. FCC (Federal Coordinating Council for Comparative Effectiveness Research)
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2010. Five next steps for a new national program for comparative-effectiveness research.
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