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A Foundation for Evidence-Driven Practice: A Rapid Learning System for Cancer Care - Workshop Summary Appendix A Workshop Agenda A FOUNDATION FOR EVIDENCE-DRIVEN PRACTICE: A RAPID LEARNING SYSTEM FOR CANCER CARE Monday and Tuesday, October 5 and 6, 2009 Keck Center of the National Academies 500 Fifth Street, N.W.—Room 100 Washington, DC 20001 AGENDA Monday, October 5, 2009 7:30 a.m. Registration and Hot American Breakfast 8:00 a.m. Welcome, Introductory Remarks: What Is a Learning Health Care System? Sharon Murphy, Scholar-in-Residence, Institute of Medicine Description of a Learning Health Care System from Differing Perspectives: The Societal and the Patient Level Lynn Etheredge, Consultant, Rapid Learning Project, George Washington University Amy Abernethy, Associate Director for Population Sciences, Information Technology (IT), and Informatics, Duke Comprehensive Cancer Center
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A Foundation for Evidence-Driven Practice: A Rapid Learning System for Cancer Care - Workshop Summary 8:30 a.m. Keynote Address Carolyn Clancy, Director, Agency for Healthcare Research and Quality A learning health care system: a framework for knowing what works and developing the infrastructure needed for developing evidence from medical practice to better inform decisions regarding delivery of effective highquality care for the patient. 9:20 a.m. New Approaches to Organization and Uses of Cancer Registries: Local, State, and National Experience Moderator: Robert German, Associate Director for Science, Division of Cancer Prevention & Control, Centers for Disease Control and Prevention Georgia Cancer Quality Information Exchange William Todd, President & CEO, Georgia Cancer Coalition Strengthening State Cancer Registry Data by Linking to Public and Private Data Sources Joseph Lipscomb, Professor of Public Health, Emory University Reengineering the Cancer Data Infrastructure for Quality Evaluation and Care Management: The National Cancer Database Model Stephen Edge, Chair, Department of Breast Surgery, Roswell Park Cancer Institute SEER Medicare Data Linkage Arnold Potosky, Director of Health Services Research, Lombardi Comprehensive Cancer Center 10:30 a.m. Ten-Minute Coffee Break
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A Foundation for Evidence-Driven Practice: A Rapid Learning System for Cancer Care - Workshop Summary 10:40 a.m. Panel Discussion, Questions German, Todd, Lipscomb, Edge, Potosky How close are we to aggregating and integrating state and national cancer datasets? How can we systematically improve cancer care by supporting rapid cancer data exchange and quality monitoring? What are the opportunities and obstacles to development of a common cancer dataset? How can information be linked from provider organizations to large private and public payers? Can we identify best practices to guide the development of consistent high-quality cancer reporting? 11:00 a.m. Open Source, Open Access Platforms: Cloud Computing for Cancer Data Sharing and Evidence Generation Moderator: Chalapathy Neti, Executive Architect Information Agenda for Healthcare, IBM Major Issues Impacting the Likelihood of Success of Large-Scale Efforts at Data Sharing and Data Integration for Fast-Track Evidence-Based Medicine Chalapathy Neti, IBM 11:15 a.m. The Cancer Biomedical Informatics Grid Kenneth Buetow, Director, Center for Biomedical Informatics and Information Technology, National Cancer Institute 11:45 a.m. National Program of Cancer Registries: Advancing E-Cancer Reporting and Registry Operations (NPCR-AERRO) Sandy Thames, Public Health Advisor, Division of Cancer Prevention & Control, Centers for Disease Control and Prevention
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A Foundation for Evidence-Driven Practice: A Rapid Learning System for Cancer Care - Workshop Summary 12:00-1:00 p.m. Lunch Break 1:00 p.m. Implications of the NRC Report on Computational Technology for Health Care William Stead, Associate Vice Chancellor for Strategy/Transformation, CIO, Vanderbilt University Medical Center 1:30 p.m. Panel Discussion/Questions Buetow, Neti, Stead, Thames Issues of Interoperability and Platform Integration What are some of the biggest impediments for IT adoption and large-scale data sharing in cancer care? Lack of perceived value? Lack of appropriate standards? Privacy concerns? What are the key change drivers to catalyze the transformation toward a learning cancer care system? What is the role of payment structures and incentives? Do we need new entities in the ecosystem to enable the transformation? If so, what is their nature? 1:45 p.m. Information Infrastructure for Rapid Learning and Comparative Effectiveness Research (CER)—The Federal Role in Promotion of Information Tools for Transformational Change Moderator: Sharon Murphy, Scholar-in-Residence, Institute of Medicine Health Information Standards for Meaningful Use of EHRs and Oncology Learning: What’s Needed? Charles Friedman, Deputy National Coordinator for Health Information Technology, Department of Health and Human Services
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A Foundation for Evidence-Driven Practice: A Rapid Learning System for Cancer Care - Workshop Summary CER: Opportunities to Improve Decision Making About Cancer Care and Prevention Harold Sox, Editor Emeritus, Annals of Internal Medicine, American College of Physicians of Internal Medicine 2:25 p.m. Panel Discussion/Questions Friedman, Murphy, Sox 2:45 p.m. Fifteen-Minute Break 3:00 p.m. Patient-Centered Rapid Learning for Cancer Patients: The Health 2.0 Movement Moderator: Paul Wallace, Medical Director for Health & Productivity Management Programs, The Permanente Federation, Kaiser Permanente Research on e-Patients and the Use of Social Media for Health Susannah Fox, Associate Director, Digital Strategy Pew Internet Project Pioneering Online Communities for Cancer Patients: 13 Years of Shared Learning Gilles Frydman, President & Founder, Association of Cancer Online Resources Patient Driven Research for a Rare Cancer: Lessons Learned from Chordoma Simone Sommer and Josh Sommer, Co-founders of the Chordoma Foundation Learning Directly with the Patient to Inform Care and Build Knowledge Jamie Heywood, Co-founder and Chairman, patientslikeme.com
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A Foundation for Evidence-Driven Practice: A Rapid Learning System for Cancer Care - Workshop Summary 4:00 p.m. Panel Discussion/Questions Fox, Frydman, Heywood, Sommer, Sommer, Wallace What are the key knowledge gaps for cancer patients today? How has this changed from five years ago? How should this change in the next five years? How do you see that change occurring? 4:30 p.m. Adjourn for the Day Tuesday, October 6, 2009 8:00 a.m. Breakfast 8:30 a.m. A View of the Future/Transforming Rapid Learning for Cancer from Concept to Reality The Experience of Two Oncologists with Two Different Patients: Clinical Vignettes Revealing the Realities and the Possibilities Amy Abernethy, Associate Director for Population Sciences, Information Technology, and Informatics, Duke Comprehensive Cancer Center Patricia Ganz, Director, Division of Cancer Prevention & Control Research, Jonsson Comprehensive Cancer Center 9:00 a.m. Impact of a Rapid Learning System for Cancer on Oncology Providers and their Practices—How to Close the Gap in Translation and Dissemination Moderators: Patricia Ganz and Amy Abernethy National Comprehensive Cancer Network (NCCN) Guidelines and Outcomes Databases Bill McGivney, CEO, National Comprehensive Cancer Network
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A Foundation for Evidence-Driven Practice: A Rapid Learning System for Cancer Care - Workshop Summary American Society of Clinical Oncology-Quality Oncology Practice Initiative (QOPI) Joseph Jacobsen, Department of Medicine, North Shore Medical Center Kaiser-Permanente Oncology-Specific Care Management Systems Paul Wallace, Medical Director for Health & Productivity Management Programs, The Permanente Federation, Permanente Federation, Kaiser Permanente 10:00 a.m. Panel Discussion/Questions Abernethy, Ganz, Jacobsen, McGivney, Wallace 10:30 a.m. Fifteen-Minute Break 10:45 a.m. The HHS-wide Policy Challenges of Responding to the Needs for Rapid Cancer Learning Moderator: Lynn Etheredge, Rapid Learning Project, George Washington University HHS Leadership in Stimulating Rapid Learning: Medicare and Cancer Care Lynn Etheredge, George Washington University Lessons from the CMS: Coverage with Evidence Development and the Oncology Demonstration Project Peter Bach, Associate Attending Physician, Memorial Sloan-Kettering Cancer Center The FDA’s Role in Facilitating Rapid Learning for Cancer Janet Woodcock, Food and Drug Administration A Rapid Learning Health Care System for Cancer: Overview and Workshop Summary of Opportunities and Practical Needs Michael McGinnis, Institute of Medicine
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A Foundation for Evidence-Driven Practice: A Rapid Learning System for Cancer Care - Workshop Summary 12:00 p.m. Panel Discussion/Questions Bach, Etheredge, German, McGinnis, Woodcock What new HHS initiatives are needed for a rapid learning health system for cancer care? What are the future challenges for each of the HHS health agencies and for HHS leadership? What has been learned from previous experience and from this workshop that can inform and shape new national cancer policies? 12:30 p.m. Adjourn for the day