Big health data project on new chief data scientist’s agenda

In his new job as the federal chief data scientist, DJ Patil will be working on a new Obama administration project to use big data to improve patient care, the White House said.

The Precision Medicine Initiative is an effort to test and eventually use “precision medicine” — that is, treatment plans that factor in differences from patient to patient — to help treat cancer and other diseases.

As part of the plan, researchers hope to bring together 1 million or more volunteers to participate in a research cohort. Participants would share genomic data, lifestyle information and biological samples, and that information would be linked to their electronic medical records, National Institutes of Health Director Dr. Francis Collins said during a two-day workshop on the program last week. Researchers then ideally would analyze that information to improve medical treatments.

“We have a lot of work to do to take what has emerged as a nascent, compelling, exciting, promising idea and turn it in to something that we can actually push for,” Collins said at the event.

He also said there would be major challenges surrounding the data sets that would be created for the research.

“This is going to require huge investments to make sure we come up with the right structures and the ability to mine them,” Collins said.

Tailoring health care treatments to patients isn’t new, he said. Indeed, patients use prescriptions for eyeglasses and receive blood transfusions based on their blood type. But things like electronic medical records, big data, mobile health applications and other advances could allow for greater precision, Collins said.

President Barack Obama announced plans for the Precision Medicine Initiative during his State of the Union address earlier this year, and he included a $215 million request for the program in his fiscal year 2016 budget request. Following the State of the Union, Department of Health and Human Services Secretary Sylvia Mathews Burwell told NIH during a town hall that the initiative was a “presidential priority.” Funding for the initiative will go toward efforts within NIH, the Food and Drug Administration and the Office of the National Coordinator for Health Information Technology, according to a White House fact sheet.

Kathy Hudson, NIH deputy director for science, outreach, and policy, said during the conference that the government has “only the barest framework for this initiative.” And she said it would develop more detailed plans as they receive input from experts and members of the public.