. "Appendix A: Workshop Agenda." A Foundation for Evidence-Driven Practice: A Rapid Learning System for Cancer Care: Workshop Summary. Washington, DC: The National Academies Press, 2010.
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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 PopulationSciences, 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
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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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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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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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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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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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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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
