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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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 , 00 Registration and Hot American Breakfast 7:30 a.m. Welcome, Introductory Remarks: What Is a Learning 8:00 a.m. 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 Keynote Address 8:30 a.m. 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 high- quality care for the patient. New Approaches to Organization and Uses of 9:20 a.m. 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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 APPENDIx A Panel Discussion, Questions 10:40 a.m. German, Todd, Lipscomb, Edge, Potosky • ow close are we to aggregating and integrating state H and national cancer datasets? • ow can we systematically improve cancer care by H supporting rapid cancer data exchange and quality monitoring? • hat are the opportunities and obstacles to W development of a common cancer dataset? • ow can information be linked from provider H organizations to large private and public payers? • an we identify best practices to guide the C development of consistent high-quality cancer reporting? Open Source, Open Access Platforms: Cloud 11:00 a.m. 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 The Cancer Biomedical Informatics Grid 11:15 a.m. Kenneth Buetow, Director, Center for Biomedical Informatics and Information Technology, National Cancer Institute National Program of Cancer Registries: Advancing 11:45 a.m. 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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0 A FOUNDATION FOR EVIDENCE-DRIVEN PRACTICE 12:00-1:00 p.m. Lunch Break Implications of the NRC Report on Computational 1:00 p.m. Technology for Health Care William Stead, Associate Vice Chancellor for Strategy/ Transformation, CIO, Vanderbilt University Medical Center Panel Discussion/Questions 1:30 p.m. Buetow, Neti, Stead, Thames Issues of Interoperability and Platform Integration • hat are some of the biggest impediments for IT W adoption and large-scale data sharing in cancer care? Lack of perceived value? Lack of appropriate standards? Privacy concerns? • hat are the key change drivers to catalyze the W transformation toward a learning cancer care system? • hat is the role of payment structures and W incentives? • o we need new entities in the ecosystem to enable D the transformation? If so, what is their nature? Information Infrastructure for Rapid Learning and 1:45 p.m. 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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 APPENDIx A 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 Panel Discussion/Questions 2:25 p.m. Friedman, Murphy, Sox 2:45 p.m. Fifteen-Minute Break Patient-Centered Rapid Learning for Cancer 3:00 p.m. 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 Panel Discussion/Questions 4:00 p.m. Fox, Frydman, Heywood, Sommer, Sommer, Wallace • hat are the key knowledge gaps for cancer patients W 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 , 00 8:00 a.m. Breakfast A View of the Future/Transforming Rapid Learning 8:30 a.m. 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 Impact of a Rapid Learning System for Cancer on 9:00 a.m. 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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 APPENDIx A 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, Kaiser Permanente Panel Discussion/Questions 10:00 a.m. Abernethy, Ganz, Jacobsen, McGivney, Wallace 10:30 a.m. Fifteen-Minute Break The HHS-wide Policy Challenges of Responding to 10:45 a.m. 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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4 A FOUNDATION FOR EVIDENCE-DRIVEN PRACTICE Panel Discussion/Questions 12:00 p.m. Bach, Etheredge, German, McGinnis, Woodcock • hat new HHS initiatives are needed for a rapid W learning health system for cancer care? • hat are the future challenges for each of the HHS W health agencies and for HHS leadership? • hat has been learned from previous experience and W from this workshop that can inform and shape new national cancer policies? 12:30 p.m. Adjourn for the day