NIH launches beta version of Data Browser for PMI cohort
The National Institutes of Health on Monday rolled out a publicly available, interactive tool providing initial data from participants in the Precision Medicine Initiative’s All of Us research program.
NIH’s beta version of the Data Browser includes a curated set of de-identified information from participants’ surveys, physical measurements and electronic health records.
The online tool is intended for use by participants in the PMI cohort, the general public and the global research community to learn more about the All of Us volunteers through the initial summary data.
“Our participants have helped build this program from the ground up, and we’re eager for them to see what they’re contributing to and how their information fits into a larger whole,” said All of Us Director Eric Dishman. “We are grateful to our participants who are generously sharing their health information, as well as giving us feedback on the program as it evolves. Thanks to them, researchers can now see the breadth and depth of data we’ve begun gathering and consider its possibilities for their work.”
Specifically, the new Data Browser is meant to encourage researchers to begin assessing the potential of the participant data for their studies and to start generating hypotheses for their research.
“Our goal is that the Data Browser will help researchers from around the world begin to understand how they will be able to use All of Us to discover new insights into the effect of lifestyle, environment, and biology on health and disease,” said Josh Denny, MD, principal investigator of the All of Us Data and Research Center and professor of biomedical informatics and medicine at Vanderbilt University Medical Center.
Ultimately, researchers will be able to request access to the data for use in a wide range of studies as the program expands the information in the Data Browser and offers more detailed breakdowns by categories, such as race and ethnicity and gender identity.
“The resource will grow richer over time as more participants join and we add new data types, from digital health data to whole genome sequences,” added Denny.
The launch of a Researcher Workbench—planned for this winter—will make an initial set of data available for in-depth analysis by researchers, who will be required to register, complete All of Us researcher ethics training and sign a data use agreement.
It was exactly a year ago that the All of Us research program officially began national enrollment to recruit one million volunteers to contribute their physical, genomic and EHR data for use by researchers looking to measure risk for a range of diseases based on environmental exposures, genetic factors and interactions between the two.
While more than 230,000 participants have begun the process of joining the All of Us research program, about 143,000 volunteers have actually completed all of the initial steps of enrollment, including answering the first three surveys, agreeing to share EHRs, having their physical measurements taken, as well as providing blood and urine samples for whole genome sequencing and other analyses.
So far, participants come from all 50 states, and 80 percent represent communities and groups that have been historically underrepresented in biomedical research, according to NIH.
Speaking at an agency symposium on Monday to mark the one-year anniversary of the research program’s national launch, NIH Director Francis Collins, MD, said the PMI cohort will provide “a lot of valuable data for researchers to explore and make those next great discoveries for health.”
Collins added that although All of Us has a long way to go before the cohort meets its goal of recruiting one million Americans to contribute their data, the program “has managed to become one of the largest, most diverse research resources in history.”
Dishman told the audience at Monday’s event that NIH is seeking public comments and suggestions on ways to improve the Data Browser. “Play with this beta version and give us feedback,” he said.