Appendix A
Workshop Agenda

CLINICAL DATA AS THE BASIC STAPLE OF HEALTH LEARNING: CREATING AND PROTECTING A PUBLIC GOOD


A LEARNING HEALTHCARE SYSTEM WORKSHOP IOM ROUNDTABLE ON EVIDENCE-BASED MEDICINE

FEBRUARY 28–29, 2008

THE KECK CENTER OF THE NATIONAL ACADEMIES

WASHINGTON, DC 20001

Issues Motivating the Discussion

  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.



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Appendix A Workshop Agenda CliniCal Data as the BasiC staple of health learning: Creating anD proteCting a puBliC gooD A Learning Healthcare System Workshop IOM Roundtable on Evidence-Based Medicine feBruary 28–29, 2008 The Keck Center of The National Academies Washington, DC 20001 Issues Motivating the Discussion 1. Discovering what works best in medical care—including for whom and under what circumstances—requires that clinical data be care- fully 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, organi- zational, and legal capacity for reliable safeguarding of individual pri- vacy and data security in mining clinical data for new knowledge. 5. A significant challenge to progress resides in the barriers and restric- tions that derive from the treatment of medical care data as a pro- prietary commodity by the organizations involved. 2

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22 CLINICAL DATA AS THE BASIC STAPLE OF HEALTH LEARNING 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 requires not only fostering data system reliability and interoperability, but 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. Goal: To explore these issues, identify potential approaches, and discuss possible strategies for their engagement. DAY ONE 8:30 WelCome anD opening remarks J. Michael McGinnis, Institute of Medicine 8:45 CliniCal Data as the BasiC staple of the learning healthCare system What is the current profile of our clinical data “utility”? What might be possible if all data sources could be readily and reliably drawn upon for new insights into healthcare effectiveness? What specific key steps would foster achieving this vision? David J. Brailer, Health Evolution Partners 9:30 session 1: u.s. healthCare Data toDay: Current state of play What purposes drive the collection of healthcare data in the United States and what is the system’s current profile? How accessible are clinical data for new clinical insights, how well are they used, and what are the barriers? How might clinical data from all sources— publicly funded and privately funded—be made more useful to monitor clinical effectiveness? Chair: Cato T. Laurencin, University of Virginia and IOM Round- table on Value & Science-Driven Health Care • Current healthcare data profile Simon P. Cohn, Kaiser Permanente and National Committee on Vital and Health Statistics • Data used as indicators for assessing, managing, and improving health care Barbra G. Rabson, Massachusetts Health Quality Partners [10:10–10:30 Break]

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2 APPENDIX A • Data primarily collected for new insights Michael S. Lauer, National Heart, Lung, and Blood Institute • Health product marketing data William D. Marder, Thomson Healthcare Panel discussion to follow 11:45 lunCh 12:45 session 2: Changing the terms: Data system transformation in progress How is the national data utility changing now in arenas ranging from large linked sets to aggregated data and registries? What notable existing efforts are making medical care data more read- ily available and usable? What are the incentives and drivers for these activities? What are the shortfalls, limitations, and challenges highlighted by different categories of approaches to organizing and aggregating data? What dynamics are pushing integration? Chair: Peter M. Neupert, Microsoft and IOM Roundtable on Value & Science-Driven Health Care • Emerging large-scale linked data systems and tools Peter A. Covitz, National Cancer Institute • Networked data-sharing and standardized reporting initiatives Pierre-André La Chance, Kaiser Permanente • Large health database aggregation Steven E. Waldren, American Academy of Family Physicians • Registries and care with evidence development Peter K. Smith, Duke University Panel discussion to follow 2:15 session 3: healthCare Data: puBliC gooD or private property? How does the structure of the medical care data marketplace affect research priorities, gaps, and possibilities? What are the charac- teristics of a public good or a public utility? On what dimensions do healthcare data compare? Can important distinctions be made within the spectrum of data types or sources? How might the case be made for improved access and sharing of medical data? What types of conceptual advances, guidance, or policy are needed? Chair: Carmen Hooker Odom, Milbank Memorial Fund and IOM Roundtable on Value & Science-Driven Health Care

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2 CLINICAL DATA AS THE BASIC STAPLE OF HEALTH LEARNING • Characteristics of a public good and how applied to healthcare data David Blumenthal, Massachusetts General Hospital • Characteristics of the marketplace for medical care data William H. Crown, i3 Innovus • Legal issues related to data access, pooling, and use Nicolas P. Terry, St. Louis University Law School Panel discussion to follow [3:45–4:00 Break] 4:00 session 4: healthCare Data as a puBliC gooD: privaCy anD seCurity Where is public opinion on these issues? What are the current legal and social challenges? What is the experience in other large data collection and management arenas? Chair: Lynn Etheredge, George Washington University • Public views Alan F. Westin, Privacy Consulting Group • HIPAA implications and issues Marcy J. Wilder, Hogan & Hartson • Examples from other sectors Elliot E. Maxwell, Johns Hopkins University • Institutional and technical approaches to ensuring privacy and security of clinical data Alexander D. Eremia, MedStar Health Panel discussion to follow 5:30 Wrap-up Comments Day, folloWeD reCeption for the By DAY TWO 9:00 WelCome anD short reCap of Day one J. Michael McGinnis, Institute of Medicine 9:15 vision for the future—Creating a puBliC gooD for the puBliC’s health What might be achieved if clinical data could be positioned as a public good? How would such a system work, and what are the

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2 APPENDIX A technical and policy issues to engage in fostering its evolution? Do we want to define integrated data as a public good? Carol C. Diamond, The Markle Foundation 9:45 session 5: Creating the next-generation Data utility—the aCtion agenDa What are some current or emerging opportunities to align policy developments with improved data access and evidence develop- ment? How might all stakeholders be engaged and what strategies or incentives are necessary given different vantage points? What are the implications of recent legislative initiatives: FDA safety legislation, national CER entity, SCHIP bill, and others? A panel of key decision makers and policy leaders will offer brief reflections, followed by an interactive discussion. Chair: David Blumenthal, Massachusetts General Hospital • Government-sponsored clinical and claims data Steve E. Phurrough, Centers for Medicare & Medicaid Services • Government-sponsored research data James M. Ostell, National Center for Biotechnology Information • Professional organization-sponsored data John (Jack) C. Lewin, American College of Cardiology [10:30–10:45 Break] • Product development and testing data Eve E. Slater, Pfizer • Regulatory policies to promote sharing Janet Woodcock, Food and Drug Administration • Legislative change to allow sharing Arthur A. Levin, Center for Medical Consumers Panel discussion to follow 12:00 lunCh 1:00 session 6: BuilDing BloCks for the next-generation puBliC agenDa What are the lessons from past efforts and signal features for future systems? Where are the greatest opportunities to take better advantage of existing data? What are some key strategic priorities in the architecture of the next-generation data utility? What specific actions will help to accelerate progress? Chair: Peter I. Juhn, Johnson & Johnson

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2 CLINICAL DATA AS THE BASIC STAPLE OF HEALTH LEARNING • Organizational models Mark B. McClellan, The Brookings Institution • Building on collaborative models Chris B. Forrest, Children’s Hospital of Philadelphia • Technical and operational challenges Brian J. Kelly, Accenture • Economic incentives C. Eugene Steuerle, Urban Institute Panel discussion to follow 2:45 session 7: engaging the puBliC What are current public views on using clinical care data for research? In what types of information are patients interested, and how might this influence how they respond to potential uses of health information? What are the needed advances (technical, communication, demonstration of value) that might help address the concerns of healthcare consumers? Chair: Donald M. Steinwachs, Johns Hopkins University and IOM Roundtable on Value & Science-Driven Health Care • Generating public interest in a public good Alison Rein, AcademyHealth • Implications of “patients like me” databases Courtney Hudson, EmergingMed • Implications of personal health records Jim Karkanias, Microsoft Panel discussion to follow 4:15 ConCluDing summary remarks anD aDjournment J. Michael McGinnis, Institute of Medicine PLANNING COMMITTEE: David Blumenthal, Massachusetts General Hospital, Harvard University Marc Boutin, National Health Council Mary Durham, Kaiser Foundation Hospitals Lynn Etheredge, George Washington University George Isham, HealthPartners Inc. Peter Juhn, Johnson & Johnson Alexander Walker, Harvard School of Public Health, Harvard University