Medicine (IOM) held a public workshop3 in Washington, DC, on February 27 and 28, 2012, using cancer research as a model research enterprise to consider the role of informatics from basic discovery science through translational research, product development, clinical trials, comparative effectiveness research, and health services research.

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 tools for acceleration of research; and to discuss solutions for transformation of the cancer informatics enterprise.

Specifically, invited speakers and participants considered the following:

• the design, development, and integration of informatics tools in cancer research;

• standards for cancer informatics tools;

• interoperability and harmonization;

• infrastructure needs for research;

• data annotation and curation of multiple complex datasets;

• methods for data use and representation;

• the implications of implementing effective informatics tools for research; and

• sustainability, governance, policy, and trust.

John Mendelsohn, co-director of the Khalifa Institute for Personalized Cancer Therapy at the University of Texas M.D. Anderson Cancer Center and chair of the IOM’s National Cancer Policy Forum, stressed that informatics is much more than electronic health care records. He called upon participants to offer practical action items that could help to advance knowledge and improve informatics as applied to cancer research. An overview of key discussion points raised by individual presenters is provided here.

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3 This workshop was organized by an independent planning committee whose role was limited to the identification of topics and speakers. This workshop summary was prepared by the rapporteurs as a factual summary of the presentations and discussions that took place at the workshop. Statements, recommendations, and opinions expressed are those of the individual presenters and participants, are not necessarily endorsed or verified by the IOM or the National Cancer Policy Forum, and should not be construed as reflecting any group consensus.



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