- Advance and scale precision medicine approaches in clinical practice.

"I couldn't practice medicine really without what we now call precision medicine," Dr. Marston Linehan, chief of urologic oncology at the National Cancer Institute,told Fast Company. "It helps us decide what operation to do, whether to do an operation or not, what drug to give."


The initiative plans include a project to follow a million individuals. At year's end the National Institutes of Health is expected to have nearly 80,000 subjects in a study to gather data, including genetic and other information.

“It’s more than collecting large amounts of data from people and following them,” Eric Topol, director of the Scripps Translational Science Institute, told Forbes. “The other theme is to really push the open data world, to give people back their data, to share data. That’s really being pushed hard. This initiative is really an initiative for that.”

This Oval Office push is putting a spotlight on a trend toward open medical data that is at the heart of both better health care and the empowerment of individuals in the medical process. “What they seem to be doing is encouraging industry to open up data release,” Daniel MacArthur, Analytic and Translational Genetics Unit (ATGU) at Massachusetts General Hospital, told the business news site. “If that’s what it turns out to be, that’s amazing.”

The power of big data to yield new insights is the sharp edge of the medical spear. “How fast we can capture their data and their tissue is how fast we can find cures,” Kathy Giusti, a myeloma patient who founded and runs the Multiple Myeloma Research Foundation told the publication.

The "big" in big data, however, is daunting, and will require massive efforts by both government and industry. The efforts at NIH to follow one million people longitudinally is one such effort. Vanderbilt University and Google's Verily will run the project, according to Fast Company. Other efforts include IBM's Watson, which will decode the DNA of 200 cancer patients and place its findings in an open database; Foundation Medicine's declaration that it will make 68,000 tests on patients with rare cancer available.

Amazon's promise to provide the vast storage needed, along with the new "Sync for Science", to develop pilot projects with electronic health record developers Allscripts, athenahealth, Cerner, drchrono, Epic and Mckesson, offer lessons that will inform efforts to "scale individual data access and donation for precision medicine research, and... be used to support implementation of consumer-mediated data access across the health care industry," stated the White House.

Health care providers, such as Yale New Haven Health, Intermountain Healthcare in Utah, and UCLA Health, are also participating in the move to big health data-driven medicine, especially by allowing patients to download their own data, so that it can be shared by individuals with researchers if they choose to do so.

Back to HCB News

Health IT Homepage