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Institute of Medicine (US) Roundtable on Value & Science-Driven Health Care. Clinical Data as the Basic Staple of Health Learning: Creating and Protecting a Public Good: Workshop Summary. Washington (DC): National Academies Press (US); 2010.

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Clinical Data as the Basic Staple of Health Learning: Creating and Protecting a Public Good: Workshop Summary.

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Preface

The Institute of Medicine convened the Roundtable on Value & Science-Driven Health Care (formerly the Roundtable on Evidence-Based Medicine) in 2006 to provide a trusted forum in which multiple healthcare sectors—including patients, health providers, payers, employees, health product manufacturers, information technology companies, policy makers, and researchers—could share perspectives on key opportunities to help transform how evidence is generated and applied to drive improvements in the efficiency and effectiveness of health care, to guide healthcare decisions, and to improve the nation’s health. An early outcome of the Roundtable activities is a shared vision of a healthcare system that draws on the best available evidence to appropriately tailor care to individual patients and to continuously add to the healthcare knowledge base. Salient topics, addressed through public workshops and collaborative groups, engage critical aspects of concepts essential to achieving this vision and the Roundtable’s goal that by 2020, 90 percent of clinical decisions will be supported by accurate, timely, and up-to date clinical information, and will reflect the best available evidence.

The perspectives, themes, and insights from each workshop are disseminated through the Learning Health System series of publications. The Clinical Data as a Basic Staple of Health Learning: Creating and Protecting a Public Good publication is a summary of the proceedings of the sixth workshop in the Learning Health System series. Held on February 12–13, 2008, this workshop was designed to explore leading perspectives on clinical data as a transformative agent in health care, as well as possible strategies for their implementation in the delivery of evidence-based care. Issues motivating the discussion include:

  1. Discovering what works best in medical care—including for whom and under what circumstances—requires that clinical data be carefully nurtured as a resource for continuous learning.
  2. Transformational opportunities are presented by evolving large and potentially interoperable clinical and administrative datasets.
  3. Clinical data are recorded and held in multiple activities and many institutions, including medical records, administrative and claims records, and research studies.
  4. Public policy and public awareness lag behind the technical, organizational, and legal capacity for reliable safeguarding of individual privacy and data security in mining clinical data for new knowledge.
  5. A significant challenge to progress resides in the barriers and restrictions that derive from the treatment of medical care data as a proprietary commodity by the organizations involved.
  6. Even clinical research and medical care data developed with public funds are often not available for broader analysis and insights.
  7. Broader access and use of healthcare data for new insights require not only fostering data system reliability and interoperability but also addressing the matter of individual data ownership and the extent to which data central to progress in health and health care should constitute a public good.

During the 2-day workshop, participants explored a variety of relevant technical, economic, legal, and policy issues important to addressing these issues. Invited speakers and panelists highlighted opportunities to advance elements of clinical data and identified areas in need of greater attention and focus. The following pages summarize the workshop discussion, including the review of characteristics of clinical data, the marketplace for health-care data, legal issues related to data access and use, and the role of privacy and security concerns. Throughout the workshop, participants identified specific policy issues in need of engagement to move to the next generation of data utility. The need for broader public engagement was also discussed, as participants noted that public policy and awareness often lag behind the technical, organizational, and legal capacity for reliable safeguarding of individual privacy and data security. Key opportunities identified included realigning incentives to promote real-time use of clinical data in evidence development, correcting the market failure for expanding electronic health records, and greater engagement of the public in shaping evidence development strategies.

We wish to acknowledge the individuals and organizations who offered their time and guidance in the development and execution of the workshop and summary. Individuals presenting at the workshop and authoring manuscripts for the summary are acknowledged in particular. Also vital to the success of the workshop were the planning committee members, representing a cross-section of stakeholders and thought leaders in clinical data issues: David Blumenthal (Massachusetts General Hospital), Mary Durham (Kaiser Permanente), Lynn Etheredge (George Washington University), George Isham (HealthPartners, Inc.), Peter Juhn (Johnson & Johnson), and Alexander Walker (Harvard University). Roundtable staff members, including Katharine Bothner, Alexander Goolsby, Claudia Grossmann, Kiran Gupta, LeighAnne Olsen, Daniel O’Neill, Kate Vasconi, Pierre Yong, and Catherine Zweig, were instrumental to workshop coordination and summary production. We also wish to acknowledge the Roundtable members for their guidance and the sponsors of Roundtable activities: Agency for Healthcare Research and Quality, America’s Health Insurance Plans, Astra-Zeneca, Blue Shield of California Foundation, Burroughs Wellcome Fund, California Health Care Foundation, Centers for Medicare & Medicaid Services, Charina Endowment Fund, Department of Veterans Affairs, Food and Drug Administration, Johnson & Johnson, Moore Foundation, National Institutes of Health, The Peter G. Peterson Foundation, sanofi-aventis, and Stryker.

Denis A. Cortese, M.D.

Chair, Roundtable on Value & Science-Driven Health Care

J. Michael McGinnis, M.D., M.P.P.

Executive Director, Roundtable on Value & Science-Driven Health Care

Copyright © 2010, National Academy of Sciences.
Bookshelf ID: NBK54300

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