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The effective use of data is foundational to the concept of a learning health system--one that leverages and shares data to learn from every patient experience, and feeds the results back to clinicians, patients and families, and health care executives to transform health, health care, and health equity. More than ever, the American health care system is in a position to harness new technologies and new data sources to improve individual and population health. Learning health systems are driven by multiple stakeholders--patients, clinicians and clinical teams, health care organizations, academic institutions, government, industry, and payers. Each stakeholder group has its own sources of data, its own priorities, and its own goals and needs with respect to sharing that data. However, in America's current health system, these stakeholders operate in silos without a clear understanding of the motivations and priorities of other groups. The three stakeholder working groups that served as the authors of this Special Publication identified many cultural, ethical, regulatory, and financial barriers to greater data sharing, linkage, and use. What emerged was the foundational role of trust in achieving the full vision of a learning health system. This Special Publication outlines a number of potentially valuable policy changes and actions that will help drive toward effective, efficient, and ethical data sharing, including more compelling and widespread communication efforts to improve awareness, understanding, and participation in data sharing. Achieving the vision of a learning health system will require eliminating the artificial boundaries that exist today among patient care, health system improvement, and research. Breaking down these barriers will require an unrelenting commitment across multiple stakeholders toward a shared goal of better, more equitable health. We can improve together by sharing and using data in ways that produce trust and respect. Patients and families deserve nothing less.
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This publication titled 'Sharing Health Data: The Why, the Will, and the Way Forward' is a comprehensive examination of the challenges and opportunities in sharing health data to improve health outcomes. Edited by Sarah M. Greene, Mahnoor Ahmed, Peak Sen Chua, and Claudia Grossmann, the book is part of the Learning Health System Series by the National Academy of Medicine. It includes case studies that highlight various initiatives and collaborations aimed at advancing data sharing in healthcare settings. The book explores the importance of building stakeholder trust and addresses the technical, ethical, and regulatory barriers to data sharing. It is intended for healthcare professionals, policymakers, and researchers interested in the intersection of data science and public health.
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"Improving our nation's healthcare system is a challenge which, because of its scale and complexity, requires a creative approach and input from many different fields of expertise. Lessons from engineering have the potential to improve both the efficiency and quality of healthcare delivery. The fundamental notion of a high-performing healthcare system--one that increasingly is more effective, more efficient, safer, and higher quality--is rooted in continuous improvement principles that medicine shares with engineering. As part of its Learning healthcare system series of workshops, the Institute of Medicine's Roundtable on Value and Science-Driven Health Care and the National Academy of Engineering, hosted a workshop on lessons from systems and operations engineering that could be applied to health care. Building on previous work done in this area the workshop convened leading engineering practitioners, health professionals, and scholars to explore how the field might learn from and apply systems engineering principles in the design of a learning healthcare system. Engineering a learning healthcare system: a look at the future: workshop summary focuses on current major healthcare system challenges and what the field of engineering has to offer in the redesign of the system toward a learning healthcare system."--Publisher's description.
Medical care - Utilization - Study and teaching - United States. --- Integrated delivery of health care --- Medical care --- Publication Formats --- Patient Care Management --- Evidence-Based Practice --- Quality of Health Care --- North America --- Clinical Medicine --- Health Care Quality, Access, and Evaluation --- Engineering --- Health Care Economics and Organizations --- Legislation as Topic --- Americas --- Publication Characteristics --- Health Occupations --- Health Care --- Health Services Administration --- Social Control, Formal --- Technology, Industry, and Agriculture --- Medicine --- Disciplines and Occupations --- Technology, Industry, Agriculture --- Geographic Locations --- Geographicals --- Delivery of Health Care --- Evidence-Based Medicine --- Quality Improvement --- Health Planning --- Congresses --- United States --- Public Health --- Health & Biological Sciences --- Hospitals & Medical Centers --- Study and teaching --- Utilization --- Medical policy
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"Health care has been called one of the most complex sectors of the U.S. economy. Driven largely by robust innovation in treatments and interventions, this complexity has created an increased need for evidence about what works best for whom in order to inform decisions that lead to safe, efficient, effective, and affordable care. As health care becomes more digital, clinical datasets are becoming larger and more numerous. By realizing the potential of knowledge generation that is more closely integrated with the practice of care, it should be possible not only to produce more usable evidence to inform decisions, but also to increase the efficiency and decrease the costs of doing clinical research. Patient-Centered Clinical Research Network, or PCORnet, is a nation-wide patient-centered clinical research network intended to form a resource of clinical, administrative, and patient data that can be used to carry out observational and interventional research studies and enhance the use of clinical data to advance the learning health care system. The primary goal of the first phase of PCORnet will be to establish the data infrastructure necessary to do such research. In April and June 2014 the Institute of Medicine's Roundtable on Value and Science-Driven Health Care convened two workshops aimed at accelerating progress toward real-time knowledge generation through the seamless integration of clinical practice and research, one of the fundamental concepts of a continuously learning health system, centered on the development of the PCORnet. The first workshop brought together health care system leaders, both administrative and clinical, and researchers to consider issues and strategic priorities for building a successful and durable clinical research network and facilitate progress toward a continuously learning health care system more broadly, including issues related to science, technology, ethics, business, regulatory oversight, sustainability, and governance. The second workshop focused on implementation approaches. Health system CEOs convened to consider strategic priorities and explore approaches to implementation. These workshops will inform the decisions of field leaders moving forward, including PCORI, the PCORnet steering committee, and PCORnet grantees. Integrating Research and Practice is the summary of the presentations and discussions of the workshops."--Publisher's description.
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