One year after the launch of its Precision Medicine Initiative, the Obama administration on Thursday announced key steps the federal government is taking to accelerate the effort to map the genomes of 1 million Americans and make the data available to researchers.
Speaking at a PMI Summit at the White House, National Institutes of Health Director Francis Collins, MD, called the landmark longitudinal study of 1 million or more U.S. volunteers the “largest, most ambitious research project of this sort ever undertaken,” with the goal of enrolling 79,000 cohort participants by the end of 2016.
To help NIH achieve that objective, a $1.2 million award has been made to Vanderbilt University—in collaboration with advisors from Verily (formerly Google Life Sciences) in Mountain View, Calif.—to create a pilot program to explore the optimal approaches and systems for engaging, enrolling and retaining participants from across the country in the PMI cohort. As part of the pilot, initial volunteers will aid the testing of methods and technologies for enabling user-friendly data collection and fostering robust engagement.
There are two primary ways to enroll in the study—as direct volunteers or as participants through healthcare provider organizations that will sign them up.
Provide organizations will include community health centers to ensure that historically underserved populations are represented in the biomedical research that will seek to answer a variety of important health questions and will not be focused on any specific disease, he said. According to Collins, the cohort will take three to four years to put together and the million or more individuals will then be tracked over many years, while adhering to the highest principles/standards of privacy, security, and data quality.
NIH will establish a participant technologies center to “harness the latest opportunities in mobile phone and sensor technologies” in order to assess health outcomes and various influences on health with greater precision than in previous cohort studies, according to Collins. In addition, NIH—in collaboration with the Office of the National Coordinator for Health IT— has initiated a program called “Sync for Science” which will pilot the use of open, standardized applications to give individuals the ability to contribute their data to research.
The pilot is designed to demonstrate a new model of research that enables participants to access their electronic health records, control and manage their data, and to submit their to the PMI cohort if they choose. Six EHR vendors— Allscripts, athenahealth, Cerner, drchrono, Epic, and McKesson—have “agreed to make this process much more transparent and available to people who have electronic records through those vendors,” added Collins.
“Cerner is committed to helping advance precision medicine through patient-enabled research to help break down data silos,” said David McCallie, MD, Cerner’s senior vice president of medical Informatics. “It’s an investment in the future of healthcare, which will benefit the industry overall.”
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