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.
Marshfield Clinic Research Institute has partnered with University of Wisconsin School of Medicine and Public Health, Froedtert & the Medical College of Wisconsin and BloodCenter of Wisconsin, part of Versiti, to capture health information from at least 100,000 Wisconsin residents over a five-year period.
“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.”
The program opened enrollment nationwide in May 2018 after an extensive period of beta testing. 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% represent communities that are historically underrepresented in research, including 51% 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. “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.
Participants may be interested in using the Data Browser to view data visualizations, compare their survey responses with the rest of the participant community, or look up conditions that affect them or their families.
To safeguard participant privacy, All of Us stores all data on a secure, encrypted platform that receives routine updates. The program strips data of personal identifiers, such as names and addresses, and displays information only in aggregated groups. Users cannot view individual records. As an added safeguard, the public Data Browser limits cross tabulation, or analyses of data using two or more variables such as age and sex.
“The Data Browser is the start of much more to come,” said Dishman. “We look forward to hearing input from the community as we roll out the initial version of this tool and expand data access over time, in our efforts to speed up research and medical breakthroughs.”
To learn more, visit ResearchAllofUs.org.