Meeting Agenda

Agenda

Monday, October 5th, 2009

7:30 am    Registration and Hot American Breakfast  

8:00 am    Welcome, Introductory Remarks: What is a Learning Health Care System?
Sharon Murphy, IOM National Cancer Policy Forum

Description of a Learning Health Care System from Differing Perspectives:The Societal and the Patient Level
Lynn Etheredge, Consultant, Rapid Learning Project, GWU
Amy Abernethy, Associate Director for Population Sciences, Information Technology (IT), and Informatics, Duke Comprehensive Cancer Center

8:30 am    Keynote Address
Carolyn Clancy, Director, AHRQ

A Learning Healthcare 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.
    
9:20 am    New Approaches to Organization/Uses of Cancer Registries: Local, State, and National Experience
Moderator: Robert German, Associate Director for Science, Division of Cancer Prevention & Control, CDC

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

Re-Engineering 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 am     Ten Minute Coffee Break 

10:40 am     Panel Discussion/Questions: German, Todd, Lipscomb, Edge, Potosky

•    How close are we to aggregating and integrating state and national cancer data sets?
•    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 data set?
•    How can information be linked from provider organizations to large private and public payors?
•    Can we identify best practices to guide the development of consistent high quality cancer reporting?
 
11:00 am    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 am     The Cancer Biomedical Informatics Grid   
Kenneth Beutow, Director, Center for Biomedical Informatics and Information Technology, NCI

11:45 am     National Program of Cancer Registries: Advancing E-Cancer Reporting and Registry Operations (NPCR-AERRO)
Sandy Thames, Public Health Advisor, Div of Cancer Prevention & Control, CDC

12:00-1:00   Lunch Break

1:00 pm       Implications of the NRC Report on Computational Technology for Health Care
William Stead, Associate Vice Chancellor for Strategy/Transformation, CIO, Vanderbilt University Medical Center

1:30pm        Panel Discussion/Questions: Neti, Beutow, Thames, Stead

Issues of Interoperability and Platform Integration 
•    What are some of the biggest impediments for I/T 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 towards 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 pm    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, HHS
 
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 pm        Panel Discussion/Questions: Murphy, Friedman, Sox

2:45 pm       Fifteen Minute Break
        
3:00 pm     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 & 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

4:00 pm       Panel Discussion/Questions: Wallace, Sommer, Sommer, Frydman, Fox, Heywood

•    What are the key knowledge gaps for cancer patients today?
•    How has this changed from 5 years ago?
•    How should this change in the next 5 years?
•    How do you see that change occurring?

4:30 pm        Adjourn for the Day
 

Tuesday, October 6th, 2009

8:00 am       Breakfast  

8:30 am    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
Speakers: Amy Abernethy, Associate Director for Population Sciences, Information Technology (IT), and Informatics, Duke Comprehensive Cancer Center
Patricia Ganz, Director, Division of Cancer Prevention & Control Research, Jonsson Comprehensive Cancer Center

9:00 am    Impact of a Rapid Learning System  for Cancer on Oncology Providers & 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

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

10:00 am     Panel Discussion/Questions: Abernethy, Ganz, McGivney, Jacobsen, Wallace

10:30 am     Fifteen Minute Break

10:45 am    The HHS-wide Policy Challenges of Responding to the Needs for Rapid Cancer Learning
Moderator: Lynn Etheredge, Rapid Learning Project, GWU

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, FDA

A Rapid Learning Health Care System for Cancer: Overview and Workshop Summary of Opportunities and Practical Needs
Michael McGinnis, Institute of Medicine

Noon            Panel Discussion/Questions: Etheredge, Bach, German, Woodcock, McGinnis

•    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 pm      Adjourn

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