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 |
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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 |
8:30 a.m. |
Keynote Address Carolyn Clancy, Director, Agency for Healthcare Research and Quality |
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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 |
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Georgia Cancer Quality Information Exchange William Todd, President & CEO, Georgia Cancer Coalition |
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Strengthening State Cancer Registry Data by Linking to Public and Private Data Sources Joseph Lipscomb, Professor of Public Health, Emory University |
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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 |
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SEER Medicare Data Linkage Arnold Potosky, Director of Health Services Research, Lombardi Comprehensive Cancer Center |
10:30 a.m. |
Ten-Minute Coffee Break |
10:40 a.m. |
Panel Discussion, Questions German, Todd, Lipscomb, Edge, Potosky |
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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 |
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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 |
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 |
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Issues of Interoperability and Platform Integration |
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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 |
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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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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 |
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Research on e-Patients and the Use of Social Media for Health Susannah Fox, Associate Director, Digital Strategy Pew Internet Project |
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Pioneering Online Communities for Cancer Patients: 13 Years of Shared Learning Gilles Frydman, President & Founder, Association of Cancer Online Resources |
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Patient Driven Research for a Rare Cancer: Lessons Learned from Chordoma Simone Sommer and Josh Sommer, Co-founders of the Chordoma Foundation |
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Learning Directly with the Patient to Inform Care and Build Knowledge Jamie Heywood, Co-founder and Chairman, patientslikeme.com |
4:00 p.m. |
Panel Discussion/Questions Fox, Frydman, Heywood, Sommer, Sommer, Wallace |
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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 |
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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 |
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National Comprehensive Cancer Network (NCCN) Guidelines and Outcomes Databases Bill McGivney, CEO, National Comprehensive Cancer Network |
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American Society of Clinical Oncology-Quality Oncology Practice Initiative (QOPI) Joseph Jacobsen, Department of Medicine, North Shore Medical Center |
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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 |
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HHS Leadership in Stimulating Rapid Learning: Medicare and Cancer Care Lynn Etheredge, George Washington University |
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Lessons from the CMS: Coverage with Evidence Development and the Oncology Demonstration Project Peter Bach, Associate Attending Physician, Memorial Sloan-Kettering Cancer Center |
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The FDA’s Role in Facilitating Rapid Learning for Cancer Janet Woodcock, Food and Drug Administration |
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A Rapid Learning Health Care System for Cancer: Overview and Workshop Summary of Opportunities and Practical Needs Michael McGinnis, Institute of Medicine |
12:00 p.m. |
Panel Discussion/Questions Bach, Etheredge, German, McGinnis, Woodcock |
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12:30 p.m. |
Adjourn for the day |