Then you have to figure out what to do with those terabytes. The goal is clinically actionable results. "You have to get to point that you can put it in an electronic health record and communicate that to the clinician who is treating a patient today," London says. "That's what everyone is working very hard on."
At Memorial Sloan Kettering, physicians have been archiving samples of patients' cancer cells, along with their clinical histories, for 30 years. Skarulis oversees one of the largest single-organization data warehouses for patient care and clinical research in the country.
Sloan Kettering's secure, Web-based system contains more than a million cancer patient records and is the basis for research into the complex mechanisms that cause cancers to form or progress. Such investigations have resulted in more effective therapies and diagnostic tools for some lung, colorectal and skin cancers.
Next-generation sequencing will take that to the next level. It "can spew out data at a rate that's incomprehensible, but that data has to be stored, processed and made available to doctors," says Skarulis, whose team rolled out a system in May to do just that.
"We've been meeting with many, many people from the institution--experts in everything from computational biology to sequencing itself--working together to pull this off," she says. "I couldn't be alive at a more exciting time in cancer research, and we're helping to get that to the bedside."
Both the technology and the science are advancing rapidly. "The explosion in technology is enabling us to examine things we couldn't look at before," Skarulis says. "One is enabling the other."
"Data," says Nadaf, "is driving change."
A Team Science
That explosion of data is also fostering closer relationships among CIOs in the research and clinical area.
"In the last 20 years," says Kibbe of NCI, "it's become clearer and clearer that cancer research is a team science. My job is very much the facilitator of that."
The U.S. government paved the way for increased collaboration with the Cancer Biomedical Informatics Grid (CaBIG) in 2004, a program to develop an open-source, open-access information network for cancer research.
"Before that, everyone was working in silos," says London of the Kimmel Cancer Center, "and not only working in silos, but competing for grant dollars." As a result, groups at various institutions might have been getting funding to work on similar or duplicative projects.
"They knew they needed to get them to share their data, and they seized upon the IT infrastructure as a way to do that," London says.
Ultimately, the CaBIG program was retired, but not before "it got us all working together," he says.
London and other biomedical informatics leaders in the NCI system are cooperating in various areas to better support the scientists and clinicians at their individual institutions. Last year, Kibbe and Nadaf launched Cancer Informatics for Cancer Centers, a national nonprofit that holds in-person meetings and conference calls on topics such as intellectual capital and cloud computing. Much like the group of nonprofit cancer organization CIOs, each IT leader brings his or her own areas of expertise to the group. London, for example, shares his approach to delivering clinically actionable results. Kibbe would like to see the alliance go worldwide.
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