Appendix A

Workshop Agenda

INFORMATICS NEEDS AND CHALLENGES IN CANCER RESEARCH

February 27 and 28, 2012
The Keck Center of the National Academies
500 Fifth Street, NW—Room 100
Washington, DC 20001

Statement of Task

An ad hoc committee will plan and conduct a public workshop whose agenda will examine the informatics needs and challenges for 21st century biomedical research, with a focus on the spectrum of cancer research, ranging from basic science to clinical, comparative effectiveness, and health services delivery research. The workshop, which will feature invited presentations and discussion, will address such topics as

• Design, development, and integration of informatics in cancer research;

• Standards for cancer informatics systems;

• Interoperability and harmonization;

• Infrastructure needs for research;

• Data annotation and curation of multiple complex datasets;



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Appendix A Workshop Agenda INFORMATICS NEEDS AND CHALLENGES IN CANCER RESEARCH February 27 and 28, 2012 The Keck Center of the National Academies 500 Fifth Street, NW--Room 100 Washington, DC 20001 STATEMENT OF TASK An ad hoc committee will plan and conduct a public workshop whose agenda will examine the informatics needs and challenges for 21st century biomedical research, with a focus on the spectrum of cancer research, rang- ing from basic science to clinical, comparative effectiveness, and health services delivery research. The workshop, which will feature invited presen- tations and discussion, will address such topics as Design, development, and integration of informatics in cancer research; Standards for cancer informatics systems; Interoperability and harmonization; Infrastructure needs for research; Data annotation and curation of multiple complex datasets; 103

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104 INFORMATICS NEEDS AND CHALLENGES IN CANCER RESEARCH Methods for data use and representation; Implications of implementing effective informatics tools for research; and Sustainability, governance, policy, and trust. Workshop sessions will also include some discussion about how to move beyond the reported shortcomings of the National Cancer Institute's (NCI's) Cancer Biomedical Informatics Grid (caBIG). The workshop may incorporate illustrative "use cases" reflecting com- mon research applications that rely on informatics and will include dis- cussion of potential policy changes to facilitate effective implementation, adoption, and use of informatics tools in cancer research. An individually authored summary of the workshop will subsequently be prepared by a designated rapporteur. AGENDA February 27, 2012 7:30 a.m. Breakfast and Registration 8:00 a.m.Welcome from the Institute of Medicine (IOM) National Cancer Policy Forum John Mendelsohn, M.D. Anderson Cancer Center Chair, National Cancer Policy Forum 8:05 a.m. Workshop Introduction and Overview Sharon Murphy, IOM SESSION I Overview of the Informatics Landscape: Where We Are, Framing the Problem, What's Working, What's Not Working, What's Available? Moderator: Sharon Murphy, IOM 8:15 a.m. Challenges, Gaps, and Opportunities in Cancer Informatics Lawrence Shulman, Dana-Farber Cancer Institute

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APPENDIX A 105 8:30 a.m. The Cancer Centers Perspective William Dalton, Moffitt Cancer Center & Research Institute 8:50 a.m. The Perspective from Cancer Cooperative Group Chairs Robert Comis, Eastern Cooperative Oncology Group Mitchell Schnall, American College of Radiology Imaging Network 9:30 a.m. Discussion 9:45 a.m. Coffee Break 10:00 a.m. The Perspective from Clinical Translational Researchers B radley Pollock, University of Texas Health Science Center 10:20 a.m. Lessons Learned from caBIG Daniel Masys, University of Washington 10:50 a.m. Discussion KEYNOTE ADDRESS 11:00 a.m. Informatics and Personalized Medicine Leroy Hood, Institute for Systems Biology 12:00 p.m. Lunch Break SESSION II Cancer Use Cases, Examples of Successful Informatics-Supported Endeavors, How Industry Is Addressing Health Care Data, Large-Scale Data Aggregation and Exchange, Overarching Issues, and Reactions Moderator: Amy Abernethy, Duke University Cancer Care Research Program

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106 INFORMATICS NEEDS AND CHALLENGES IN CANCER RESEARCH 1:00 p.m.DELL-TGen Cloud Computing Collaboration in Personalized Medicine for Pediatric Neuroblastoma August Calhoun, Dell Healthcare and Life Sciences Spyro Mousses, TGen 1:30 p.m.National Comprehensive Cancer Network (NCCN): Database Reporting Systems and Analytics Kimary Kulig, NCCN Clinical and Translational Outcomes Research 2:00 p.m.Information Technology (IT) Innovations in a Health Care Network Devoted Exclusively to Cancer Research and Treatment Asif Ahmad, Information and Technology Services, US Oncology 2:30 p.m.Secondary Uses of Data for Comparative Effectiveness Research Paul Wallace, The Lewin Group 3:00 p.m. Coffee Break 3:15 p.m. Panel Discussion Moderator: Adam Clark, MedTran Health Strategies Speakers joined by panelists: Gwen Darien, NCI Director's Consumer Liaison Group and cancer survivor Deven McGraw, Center for Democracy and Technology James Cimino, National Institutes of Health (NIH) Laboratory for Informatics Development Steven Piantadosi, Cedars-Sinai Medical Center 4:45 p.m. Wrap-up Amy Abernethy, Duke University Cancer Care Research Program 5:00 p.m. Adjourn Day 1

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APPENDIX A 107 February 28, 2012 7:30 a.m. Breakfast and Registration SESSION III Potential Pathways Forward, New Models Co-moderators: Amy Abernethy, Duke University Cancer Care Research Program, and William Dalton, Moffitt Cancer Center & Research Institute 8:00 a.m. Overview of the Needs for Cancer Research John Mendelsohn, M.D. Anderson Cancer Center Chair, National Cancer Policy Forum 8:10 a.m.Systems and Personalized Medicine Enabled by Public Data Atul Butte, Stanford University School of Medicine 8:55 a.m. A Systems-Based Approach to Cancer Informatics George Poste, Arizona State University Complex Adaptive Systems Initiative 9:40 a.m. Discussion 9:50 a.m.How Cancer Informatics Will Enable Disruptive Innovation Jason Hwang, Innosight Institute 10:15 a.m. Coffee Break 10:35 a.m. Perspectives from the Office of the National Coordinator Farzad Mostashari, Office of the National Coordinator for Health Information Technology 10:55 a.m. Electronic Health Records (EHRs) and Cancer Research Sam Butler, Epic

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108 INFORMATICS NEEDS AND CHALLENGES IN CANCER RESEARCH 11:05 a.m.Democratizing Big Data Informatics for Cancer and Other Therapeutic Areas Kris Joshi, Oracle 11:15 a.m. Cancer CenterBased Coalitions and IT Networks William Dalton, Moffitt Cancer Center & Research Institute 11:35 a.m.A Proposal for a Coalition of All Stakeholders to Achieve Data Liquidity in Cancer Marcia A. Kean, Feinstein Kean Healthcare 11:50 a.m. Panel Discussion Moderator: Lynn Etheredge, Rapid Learning Project, George Washington University Speakers joined by panelists: Brandon Hayes-Lattin, Oregon Health & Science University and LIVESTRONG Bradford Hesse, NCI Mia Levy, Vanderbilt-Ingram Cancer Center Allen Lichter, American Society of Clinical Oncology 12:50 p.m. Summary and Conclusions 1:00 p.m. Adjourn