One year after beginning nationwide enrollment, NIH’s All of Us Research Program has announced the beta release of its interactive Data Browser to provide a first look at the data that participants are sharing for health research.
Participants, researchers, and other members of the public may use the online tool to learn more about the All of Us participant community and explore summary data. Later, researchers will be able to request access to the data for use in a wide range of studies that may lead to more customized ways to prevent and treat disease.
To date, more than 192,000 people have enrolled, including more than 143,000 participants who have completed all of the initial steps of the program—answering the first three surveys, agreeing to share electronic health records (EHRs), having their physical measurements taken, and providing blood and urine samples for whole genome sequencing and other analyses. Of these participants, 80 percent represent communities that are historically underrepresented in research, including 51 percent from racial and ethnic minority groups. Participants hail from all 50 states.
“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, M.D. M.S., principal investigator of the All of Us Data and Research Center and professor of biomedical informatics and medicine at Vanderbilt University Medical Center, in a statement. “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.”
In its initial release, the Data Browser features a curated set of information from surveys, physical measurements, and EHRs from participants:
• Surveys: The initial surveys include questions about basic demographics, overall health, and certain lifestyle factors, such as smoking. More surveys will be added in future releases.
• Physical measurements: Measurements are taken at All of Us partner sites and include height, weight, body-mass index, waist circumference, hip circumference, blood pressure, and heart rate. Pregnancy status and wheelchair use also are noted.
• EHRs: EHR data includes information about health conditions, procedures, medications, health care visits, and more.
In time, the program seeks to expand the information in the Data Browser and offer more detailed breakdowns of data by various categories, such as race and ethnicity and gender identity. These enhancements may provide a fuller picture of the diversity of the participant community and help advance research on health disparities. Community partners are actively engaged with the program to ensure this information is conveyed appropriately.
This winter, the program plans to launch the Researcher Workbench, making its initial set of data available for in-depth analysis. Researchers seeking access will need to register, complete All of Us researcher ethics training, and sign a data use agreement. More information about the data access policies and application process will be available in coming months. In the meantime, the Data Browser may allow researchers to generate hypotheses and begin assessing the potential of All of Us data for their studies.
