Last week Obama refocused on his Precision Medicine Initiative, which along with the “moonshot against cancer” was launched in his State of the Union address. Both seek to push medical research forward with the weight and money of the federal government behind it.
Precision Medical Initiative
The centerpiece of the Initiative, which Obama launched last year, is a National Institutes of Health project to gather data on the health habits of 1 million volunteers, a goal the NIH hopes to reach by the end of 2019. Obama says the database will aid in medical breakthroughs by enabling doctors to better tailor treatments and provide for preventive care based on people’s genes, environment and lifestyle. The National Institutes of Health on Thursday announced first steps to set up the database so it can begin recruiting soon.
The hope is that by pooling so much data from diverse groups of people researchers will be able to more quickly discern patterns in who develops certain diseases and who doesn’t, and who responds to one treatment or another.
While much of that information already exists, its hard to access and aggregate it from the electronic medical records kept by different groups — hospitals, doctors’ offices, the EMR companies. Part of the initiative also 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.
Cancer Moon Shot also to Address Data Sharing
This part of the Initiative spills into Vice-President Biden’s cancer moonshot, as access to data and information was pinpointed as a key issue in holding research back.
“Several cutting-edge areas of research and care — including cancer immunotherapy, genomics, and combination therapies — could be revolutionary,” Biden wrote. “But the science, data, and research results are trapped in silos, preventing faster progress and greater reach to patients. It’s not just about developing game-changing treatments — it’s about delivering them to those who need them,” Biden added.
This point was made by Dr. W. Marston Linehan of the National Cancer Institute while speaking at the summit the President convened around the Precision Medical Initiative. He explained that what’s called kidney cancer is made up of at least 16 different genetic types, and went on to describe 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. Its these types of cases the Initiative hopes to make more common.
Obama’s latest budget asks Congress for $309 million for the Initiative next year, an increase of more than $100 million over this year’s spending. The good news is, unlike so many other issues where Obama and congressional Republicans are at odds, the precision medicine initiative is one that has a fair amount of GOP support, including the blessing of Senator Lamar Alexander, the chairman of the Senate Health, Education, Labor, and Pensions Committee. Of course it didn’t hurt that the first NIH award in the project — $1.3 million to set up a pilot program to recruit medical volunteers — is going to Vanderbilt University, located in his home state of Tennessee. Vanderbilt will be working with Verily, the company that used to be called Google Life Sciences on pilot project to learn how best to attract those volunteers for the database, how to collect the data, and what findings about their own health participants want in return.
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.
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