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Dr. Kenneth Buetow's multidisciplinary scientific career has focused for more than 20 years on understanding the role of genetics in complex human diseases such as cancer, and on applying sophisticated informatics technologies to solve major biomedical challenges. Dr. Buetow is the Associate Director of Bioinformatics and Information Technology and the Director of the Center for Biomedical Informatics and Information Technology at the National Cancer Institute. He initiated and oversees the cancer Biomedical Informatics Grid® (caBIG®) program, a groundbreaking initiative built to connect the entire cancer community in a "World Wide Web" of biomedical research. caBIG® has pioneered the electronic infrastructure needed to enable organizations and individual researchers to securely share biomedical data, and its capabilities serve as a demonstration of the connectivity to achieve a personalized approach to care.
We spoke with Dr. Buetow in October 2009 to learn more about his vision for a technology-enabled health care system to support personalized medicine.
A: caBIG® is a collaborative network designed to speed research discoveries and improve patient outcomes by linking researchers, physicians, and patients throughout the cancer community. It is made up of an infrastructure (caGrid), interoperable software tools, and standards that enable the collection, analysis, and sharing of data and knowledge along the entire biomedical continuum from laboratory bench to patient bedside and back.
caBIG® was developed by the National Cancer Institute (NCI) to put into place the electronic infrastructure and capability to make personalized medicine in cancer care a reality. It is now the largest electronic biomedical network of its kind in the world, with 56 NCI designated Cancer Centers participating as well as community centers and various other research institutions around the globe.
A: Personalized medicine is really about using a great deal of data—biologic and clinical data—in an organized way to determine the best preventive, diagnostic, prognostic, and treatment strategies for an individual. To achieve this, a tremendous amount of information must be captured in an organized, standardized way, so that it can be shared across the whole universe of biomedicine. That means making it available for biomedical research to fuel new hypotheses, making it available to help physicians so that they can see how other patients treated in a similar manner have responded, making it available to consumers so they can make informed decisions about their health and treatment options, and making it available to health care providers and policymakers so that we can identify what's working and not working across the entire health enterprise.
A: On the discovery side, researchers will be able to examine and query huge clinical and biological data sets to generate new hypotheses and identify biomarkers. In clinical research, recruitment and enrollment of patients into clinical trials will be accelerated based on "standing populations" of patients and consumers that are pre-enrolled, consented, and molecularly sub-grouped. And, further downstream, electronic medical records (EMRs) and electronic infrastructure supporting health care, including oncology, will help physicians leverage the experience of large numbers of clinical encounters to assess what is working best, in order to make optimized treatment decisions.
Put together, these components form what we call a "rapid learning health care system", where new discoveries are rapidly integrated into clinical practice, and patient outcomes are captured and analyzed to drive research advances.
A: Absolutely—the bench-to-bedside-back-to-bench continuum should be centered around patients. Unfortunately, there has been an "invisible wall" between researchers and consumers. caBIG®-enabled connectivity makes it possible to break down that barrier and form a mutually beneficial system where researchers have access to rich study populations for targeted investigations, and where patients may be proactive about participating in the research process—even before they are ill—and may have access to more therapies and interventions than would have previously been available to them.
We recently launched a partnership with the Love/Avon Army of Women to demonstrate this new 21st century model of research that empowers consumers. Called the Health of Women (HOW) study, this project will build the world's first online cohort of one million women—normal, high risk, and survivors—and use Web-based software to connect them with researchers to help find the causes of and prevent breast cancer. What's great about this novel approach is that it can be widely applied outside of cancer, to other diseases and areas of study.
View of the Expert posted October 2009