The program, a national cohort comprised of both patients, and health-care providers and companies, is funded through the president’s budget and is part of the White House’s Precision Medicine Initiative (PMI), announced last year, to fund data-driven research for medicines and therapies individually tailored to a patient’s genes, environment, health history and lifestyle.
On a press call held Wednesday, Feb. 24, officials from the White House Office of Science and Technology Policy, the National Institutes of Health (NIH) and the Multiple Myeloma Research Foundation outlined the PMI Cohort Program.
“One of the things that’s truly unique about this cohort is that the participants are at the table,” said Dr. Francis Collins, an NIH director who is leading the effort and served as a leader in the groundbreaking Human Genome Project.
Collins said the cohort is expected to reach 50,000 people by the end of 2016 and 1 million people by end of 2019. It will also be entirely voluntary and guided with input from all involved, whether they be health providers, patients or companies. As part of the cohort, Collins said participants submit their health data into a single repository that will not only store the information securely, but will structure it into standardized data formats that scientists and researcher can easily access. The NIH is collaborating with the electronic health record developers Allscripts, athenahealth, Cerner, drchrono, Epic and Mckesson to make this happen by way of open application programming interfaces (APIs).
As data is collected and the cohort grows, Collins said the program may also serve as a resource for finding participants for clinical trials involving new medicines and treatments. At present, he said, the process of locating the right individuals is laborious and time consuming. The cohort, however, could provide researchers a vast pool of possible candidates.
Another benefit is a new “biobank” to house collected tissue samples, which often must be fresh for the best analysis. The biobank, Collins said, is game-changing.
“It will absolutely change the entire paradigm of research,” he said. “We have much work ahead of us.”
Vanderbilt University in collaboration with Verily — formerly Google Life Sciences — is tasked with launching the first phase of the PMI Cohort Program by building a framework for participants engagement and information sharing. Similarly, the program has drawn commitments from more than 40 private-sector organizations to partner on related precision medicine research. Some of these include IBM, which will provide its Watson supercomputer to help crunch genomic data; Amazon Web Services, which will assist with cloud storage; and Intel, which is launching its own precision medicine program to develop analytics tools and a proof of concept for a data center designed to handle large genomic data sets.
In a statement accompanying the White House announcement, Intel estimated that in five years, patients would be able to use their mapped genomes for one-day diagnosis and targeted treatment plans.
To answer potential privacy challenges, the White House has published a draft of data security measures to administer the precision medicine initiative and is opening up for public comment. Further, an internal review board has been established to monitor progress.
