NIH taking first steps on huge precision medicine project

President Barack Obama held out the promise of medical breakthroughs Thursday as his administration moved ahead with a major project to learn how to better tailor treatments and preventive care to people's genes, environment and lifestyle.

"This is an extraordinarily exciting time," Obama told a White House summit to highlight progress on his Precision Medicine Initiative. "We may be able to accelerate the process of discovering cures in ways that we've never seen before."

The biggest step in that initiative: A massive database that will track the health of at least 1 million volunteers by 2019, work that will go beyond standard medical exams to include even day-to-day wellness information gathered from smartphones or wearable sensors.

The National Institutes of Health on Thursday announced first steps to set up the database so it can begin recruiting soon.

"For most of history, medicine has been based on trying to identify what works for the average person. We're all different. This one-size-fits-all approach is far from optimal," Dr. Francis Collins, NIH's director, told reporters.

The goal is to "empower any person, anywhere in the U.S., to raise their hand and volunteer to participate" in what's called the PMI Cohort Program, he said.

NIH said is it providing funding to Vanderbilt University for a pilot project to learn how best to attract those volunteers, how to collect the data, and what findings about their own health participants want in return. Vanderbilt will work in collaboration with advisers from Verily, formerly Google Life Sciences.

Obama said Thursday that pooling so much data, from diverse groups of people, will speed researchers' ability to more quickly discern patterns in who develops certain diseases and who doesn't, and who responds to one treatment or another. Much of that information currently is collected in electronic medical records kept by different groups — hospitals, doctors' offices, the EMR companies — so part of the initiative aims to make it easier for patients to access their own records and share them with researchers. Obama said the initiative also must ensure patient privacy.

The president proposed the precision medicine initiative last year, saying it would help doctors get the right treatment to the right patient at the right time. He is asking Congress for $309 million next year to scale up the initiative, almost all of it for NIH.

Lots of research already is under way, especially in cancer, where some patients undergo molecular tests to predict which drugs will best match their tumor. Consider: What's called kidney cancer is made up of at least 16 different genetic types, Dr. W. Marston Linehan of the National Cancer Institute told the summit. He described a recent patient who is doing well using drugs widely considered useless for kidney cancer but that happened to be her tumor's best match.

One challenge is how to ensure drug companies develop affordable therapies targeted to smaller numbers of patients rather than focusing on blockbusters. Obama said it's better not to waste time and money on treatments that may ultimately not help individual patients.

"Over the long term, we can save a lot of money if every drug we prescribe actually works," he said.

The precision medicine database will use data from patients already enrolled in other genomic studies as well as people who directly volunteer, and NIH's Collins said a goal is to enroll 79,000 by year's end.