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

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

10:40 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

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

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

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?

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

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

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?