As information technology becomes an integral part of health care, it is important to collect and analyze data in a way that makes the information understandable and useful. Informatics tools--which help collect, organize, and analyze data--are essential to biomedical and health research and development. The field of cancer research is facing an overwhelming deluge of data, heightening the national urgency to find solutions to support and sustain the cancer informatics ecosystem. There is a particular need to integrate research and clinical data to facilitate personalized medicine approaches to cancer prevention and treatment--for example, tailoring treatment based on an individual patient's genetic makeup as well as that of the tumor --and to allow for more rapid learning from patient experiences. To further examine informatics needs and challenges for 21st century biomedical research, the IOM's National Cancer Policy Forum held a workshop February 27-28, 2012. The workshop was designed to raise awareness of the critical and urgent importance of the challenges, gaps and opportunities in informatics; to frame the issues surrounding the development of an integrated system of cancer informatics for acceleration of research; and to discuss solutions for transformation of the cancer informatics enterprise. Informatics Needs and Challenges in Cancer Research: Workshop Summary summarizes the workshop.

Contents

• THE NATIONAL ACADEMIES
• WORKSHOP PLANNING COMMITTEE
• NATIONAL CANCER POLICY FORUM
• Reviewers
• 1. Introduction
  • ORGANIZATION OF THE WORKSHOP AND SUMMARY
  • REFERENCES
• 2. Overview of the Cancer Informatics Landscape
  • STRUCTURED, INTEROPERABLE RESEARCH AND CLINICAL INFORMATION SYSTEMS—OR THE LACK THEREOF
  • CANCER CENTER INFORMATICS: CONNECTING WITH PATIENTS
  • CANCER COOPERATIVE GROUP INFORMATICS: CONNECTING RESEARCHERS
  • CLINICAL TRANSLATIONAL RESEARCH INFORMATICS: CONNECTING THE STEPS OF THE RESEARCH PROCESS
  • caBIG—THE VISION AND THE REALITY
  • REFERENCES
• 3. Informatics and Personalized Medicine
  • AN INTEGRATIVE SYSTEMS APPROACH TO BIOLOGY, MEDICINE, AND COMPLEXITY
  • APPLICATIONS OF SYSTEMS MEDICINE: THE P4 APPROACH
  • REFERENCES
• 4. Informatics-Supported Cancer Research Endeavors
  • CASE EXAMPLE: DELL-TGen CLOUD COMPUTING COLLABORATION IN PERSONALIZED MEDICINE FOR PEDIATRIC NEUROBLASTOMA
  • CASE EXAMPLE: NATIONAL COMPREHENSIVE CANCER NETWORK OUTCOMES DATABASE
  • CASE EXAMPLE: IT INNOVATIONS FOR COMMUNITY CANCER PRACTICES
  • CASE EXAMPLE: SECONDARY USES OF DATA FOR COMPARATIVE EFFECTIVENESS RESEARCH
  • CROSS-CUTTING ISSUES
  • REFERENCES
• 5. Potential Pathways and Models for Moving Forward
  • PUBLIC DATA-DRIVEN SYSTEMS AND PERSONALIZED MEDICINE
  • ADAPTING TO DATA-INTENSIVE, DATA-ENABLED BIOMEDICINE
  • BIG DATA AND DISRUPTIVE INNOVATION: MODELS FOR DEMOCRATIZING CANCER RESEARCH AND CARE
  • THE EHR AND CANCER RESEARCH AND CARE
  • CANCER CENTER–BASED NETWORKS FOR HEALTH RESEARCH INFORMATION EXCHANGE
  • OTHER MODELS AND PATHWAYS
  • REFERENCES
• 6. Proposal for a Coalition of All Stakeholders
  • ACHIEVING DATA LIQUIDITY IN THE CANCER COMMUNITY
• 7. Transforming Cancer Informatics: From Silos to Systems
  • A FRAMEWORK FOR ACTION
  • Changing Minds, Changing Behaviors
• Acronyms
• Appendix A Workshop Agenda
• Appendix B Speaker, Moderator, and Panelist Biographies

Rapporteurs: Sharyl J. Nass and Theresa Wizemann.

This study was supported by Contract Nos. HHSN261200900003C and 200-2005-13434 TO #1 between the National Academy of Sciences and the National Cancer Institute and the Centers for Disease Control and Prevention, respectively. In addition, the National Cancer Policy Forum is supported by the American Association for Cancer Research, the American Cancer Society, the American Society of Clinical Oncology, the Association of American Cancer Institutes, Bristol-Myers Squibb, C-Change, the CEO Roundtable on Cancer, Novartis Oncology, and the Oncology Nursing Society. The views presented in this publication do not necessarily reflect the view of the organizations or agencies that provided support for this project.

Suggested citation:

IOM (Institute of Medicine). 2012. Informatics needs and challenges in cancer research: Workshop summary. Washington, DC: The National Academies Press.

NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine.