A Significant Milepost on the Cancer Informatics Super Highway
Five years ago, NCI launched the cancer Biomedical Informatics Grid (caBIG) as a pilot program to develop an electronic data infrastructure system for cancer research. It was an ambitious vision to create the world's largest biomedical research "highway." Last week, at the caBIG annual meeting, we had the opportunity to see just how successful this effort has become in a very short time.
Through caBIG, NCI has built an interoperable information network, a platform that supports the exchange of large volumes of research and clinical data, along with the requisite storage and information security that are all too important in an electronic era like today. In addition, caBIG has developed, and now makes freely available, more than 40 software tools that are being applied to basic and clinical research questions related to studying cancer and other diseases—from integrative cancer research tools, to the management of clinical trials, to the inventory, tracking, and clinical annotation of biospecimens.
Today, some 1,500 individuals from more than 450 organizations representing 13 countries are participating in caBIG projects. caBIG technology has been used to link 50 of the 65 NCI-designated Cancer Centers, along with members of the NCI Community Cancer Centers Program, The Cancer Genome Atlas, numerous other NCI-supported scientific programs, and hundreds of scientists. And caBIG is now being used by other NIH institutes, including the National Heart, Lung and Blood Institute, the National Institute of Arthritis and Musculoskeletal and Skin Diseases, and the National Institute of Child Health and Human Development. The FDA and scientists in the United Kingdom are using caBIG, and a new collaboration with researchers in India is underway.
During last week's meeting, NCI unveiled an exciting new collaboration with the Dr. Susan Love Research Foundation and its Love/Avon Army of Women, which will use caBIG to enable the first online breast cancer research cohort of a million women. This program will be able to securely manage massive amounts of clinical and demographic data, harnessing the enthusiasm of women around the globe to participate in research.
Importantly, caBIG encompasses much more than storage and retrieval of data. It is a systematic approach to achieve information technology connectivity, making huge volumes of carefully annotated, well-catalogued data and open-source software freely available to the scientific community. Fully aware of the immense challenges that accompany this goal, caBIG is also the platform for a pioneer effort that we call the "Cancer Knowledge Cloud," a new method of instant access to information, tools, and computing power through the Internet. The "Cloud" is the next step toward a truly connected 21st-century research and cancer clinical care enterprise.
caBIG is also an integral component of NCI's overall vision to change the course of cancer research and treatment. NCI is developing the concept for a pilot center that will utilize the latest technologies to characterize both patients and their tumors. This center will be the test bed, if you will, for a new paradigm in translational research, which will match the specific needs of an individual, highly characterized patient with drugs specific to his or her cancer. We will take the "proof of efficacy" question for a novel molecular agent to the information cloud, asking that all genetically appropriate test subjects be identified for possible inclusion in a trial of that agent.
As you can imagine, the amount of information gathered will be huge, and it will be useful only if it is well organized, appropriately controlled, and accessible. We project quantities of data to go beyond petabytes (quadrillions of bytes) and into exabytes (quintillions of bytes). Fundamental to this connection is the electronic health record (EHR). caBIG's leadership is collaborating with the American Society of Clinical Oncology to create an open-source, cancer-specific EHR that will link all the constituents of the cancer community—researchers, clinicians, and patients—in a continuum of research, development, and care. This, in short, is where caBIG and the health care system must go in the years ahead.
Cancer is in many ways a model for the study of all disease. It is, then, no surprise that caBIG is helping to lead biomedicine into the digital age. Aneesh Chopra, the nation's first chief technology officer, remarked at the caBIG meeting that collecting information on all patient encounters and outcomes is essential to truly understand the drivers of disease and drug response and to develop innovative and new approaches to treatment and prevention. We owe it to the patients we serve to ensure that the larger biomedical community learns from their diagnoses, treatments, and clinical outcomes so that the whole of cancer research may move forward.
This is not a time to be timid. The worlds of information technology and biomedical research are converging. I am confident that caBIG will continue to provide the platform for innovation across the biomedical enterprise, and I look forward to seeing what it will accomplish in the next 5 years.
Dr. John E. Niederhuber
Director, National Cancer Institute