1 million patient cohort being prepared to fuel precision medicine knowledge base
The promise of precision medicine is starting to be realized. The combination of patient medical records and genomic data is proving to be a potent source of data for clinicians as they apply analytical tools in the search for better treatments.
But one factor holds back many new initiatives. The data available for analysis is limited to the records of patients who are participating in any given trial. For precision medicine to reach its true potential, the number of patient datasets will need to grow dramatically.
That’s the challenge that the National Institute of Health’s All of Us Research Program aims to solve. With a goal of building a national research cohort of one million or more U.S. participants, the program’s goal is to build one of the largest, most diverse biomedical datasets in the world and to make it free to use.
Eric Dishman, the program’s director, said “this national resource may help researchers better understand the complexities of how many factors — biology, genetics, location, behavior, social life, exposure, and environment — interact to influence health at both a population and individual level.”
Diversity is central to the program’s planning. Dishman said that over time, the data will represent “perhaps the most diverse collection of people in human history.”
The goal will be to solve some of the most challenging riddles of medicine, “questions like, what makes one person get sick and another similar person show no signs of any problem?” Dishman explained. “Why do some treatments work for some people but not others? How can we make care more effective, where it’s tailored to each of us as individuals?”
A biobank, managed by the Mayo Clinic, will handle the collection, analyses, storage, and distribution of biospecimens for research use. Data from lab analyses of the biospecimens will be integrated with information from participants’ records including lifestyle and clinical records.
The All of Us Research Program, funded by $130 million from the NIH, was originally called the Precision Medicine Initiative Cohort Program.
Dishman will provide a close look at the program and its progress at the Precision Medicine Summit in Boston on June 12.
A veteran of Intel, where he was responsible for product and policy initiatives for health and life science solutions, Dishman is know for innovative approaches to healthcare that integrate anthropology, ethnography, and other social science methods.
Dishman also has firsthand experience with the realities of cancer treatment, having survived 23 years of treatment, which resulted in a cure thanks to precision medicine.
Access to the data will be managed through the program’s Data and Research Support Center which is expected to build an active community of researchers who can learn from the information and propose new research intiaitives. Vanderbilt University Medical Center, Nashville, Tennessee, working with the Broad Institute, Cambridge, Massachusetts, and Verily, Mountain View, California won the primary award for this program. Additional funding is going to Columbia University Medical Center, Northwestern University Feinberg School of Medicine, University of Michigan School of Public Health and the University of Texas Health Science Center at Houston School of Biomedical Informatics.
The first data collection will begin soon. Dishman will provide details on the controlled beta test during his June 12 presentation at the Precision Medicine Summit.