WORKSHOP DESCRIPTION
The National Cancer Policy Forum held a public workshop on February 27th and 28th, 2012 to examine the informatics needs and challenges for 21st century biomedical research, with a focus on the broad spectrum of cancer research, ranging from basic discovery science to translational research, product development, clinical trials, comparative effectiveness, and health services research.
The aims of the workshop were to:
• raise awareness of the critical and urgent importance of the challenges, the gaps, and opportunities in informatics,
• frame the problem, making the case for the need for an integrated system of cancer informatics for acceleration of research, and
• discuss solutions for transformation of the cancer informatics enterprise, requiring organized effort and leadership from the stakeholder community
Informatics is essential to health research; and cancer, like most scientific disciplines, is drowning in a deluge of data, finding it extremely challenging to organize, manage, access, and exchange data. There is a particular need to integrate research and clinical data to facilitate personalized medicine approaches to cancer treatment, allowing tailoring of approaches based on the genetic makeup of each individual patient and his or her tumor characteristics. The recent devolution of caBIG has left something of a void and has increased the national urgency find solutions to support and sustain the cancer informatics ecosystem.
This workshop addressed 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 data sets
• methods for data use and representation
• the implications of implementing effective informatics tools for research
• sustainability, governance, policy and trust
The workshop incorporated illustrative “use cases” reflecting innovative approaches, such as cloud computing, as well common and complex research applications, managing large data sets from research networks that rely on informatics, and will also include discussion of potential policy and societal/cultural changes to facilitate effective and efficient sharing of research data, adoption and use of informatics tools in cancer research.
An individually-authored summary of the workshop will be prepared and published by The National Academies Press.
SPEAKERS & PANELISTS
Amy P. Abernethy, MD – Duke University School of Medicine
Asif Ahmad, MBA, MS – United HealthCare, McKesson Specialty Health
Sam Butler, MD – Epic
Atul J. Butte, MD, PhD – Stanford University School of Medicine
August Calhoun, PhD – Dell Healthcare and Life Sciences
James J. Cimino, MD – NIH Laboratory for Informatics Development
Adam M. Clark, PhD – MedTran Health Strategies
Robert L. Comis, MD – Eastern Cooperative Oncology Group
William S. Dalton, PhD, MD – Moffitt Cancer Center & Research Institute
Gwen Darien – Samuel Waxman Cancer Research Foundation
Lynn Etheredge – Rapid Learning Project, George Washington University
Brandon Hayes-Lattin, MD – Oregon Health and Science University
Bradford W. Hesse, PhD – National Cancer Institute
Leroy E. Hood, MD, PhD – Institute for Systems Biology
Jason Hwang, MD, MBA – Innosight Institute
Kris Joshi, PhD – Oracle Health Sciences Global Business Unit
Marcia A. Kean, MBA – Feinstein Kean Healthcare
Kimary Kulig, PhD, MPH – National Comprehensive Cancer Network
Mia A. Levy, MD, PhD – Vanderbilt-Ingram Cancer Center
Allen S. Lichter, MD – American Society of Clinical Oncology
Daniel R. Masys, MD – University of Washington School of Medicine
Deven McGraw, JD, LLM – Center for Democracy and Technology
John Mendelsohn, MD – MD Anderson Cancer Center
Farzad Mostashari, MD, ScM – Office of the National Coordinator for Health Information Technology
Spyro Mousses, PhD – The Translational Genomics Research Institute
Steven Piantadosi, MD, PhD – Samuel Ochsin Comprehensive Cancer Institute
Brad H. Pollock, MPH, PhD – University of Texas Health Science Center
George Poste, DVM, PhD, FRS – Arizona State University Complex Adaptive Systems Initiative
Mitchell D. Schnall, MD, PhD – American College of Radiology Imaging Network
Lawrence N. Shulman, MD, FACP – Dana-Farber Cancer Institute
Paul Wallace, MD – The Lewin Group Center for Comparative Effectiveness Research