The NIH has announced the beta launch of its interactive Data Browser, which allows users to get an early look at the types of data participants in the All of Us are sharing with the research program.
To date, more than 192,000 people have enrolled in the program that has a goal of attracting one million participants. Of those enrolled, roughly 143,000 have completed all the initial steps of the program including completing 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.
“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 in a press release. “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.”
All 50 states are represented among those who have enrolled in the program. More importantly, 80% of the current participants in the study belong to communities that are underrepresented in current research with more than 51% from racial and an ethnic minority groups.
According to 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 goal of the beta site is to give researchers and early view of the types of data the research program will have available and the potential ways it can be used to deliver “new insights into the effect of lifestyle, environment, and biology on health and disease.
“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,” Denny added.
The beta version of the Data Browser offers the following:
- Details from the initial surveys that included questions about basic demographics, overall health, and certain lifestyle factors, such as smoking. More surveys will be added in future releases.
- Physical measurements that were taken at All of Us partner sites that include height, weight, body-mass index, waist circumference, hip circumference, blood pressure, and heart rate. Pregnancy status and wheelchair use also are noted.
- Patient EHR data with information about health conditions, procedures, medications, health care visits, and more.
Future updates to the Data Browser will more detailed breakdowns of data by various categories, such as race and ethnicity, and gender identity—enhancements intended to provide a more complete view of the diversity of the program participants, which can help advance research on health disparities
At the end of this year or early in 2020, All of Us plans to launch its Researcher Workbench, that will make the initial sets of data available for in-depth analysis. Researchers will need to register for access to these data, complete All of Us researcher ethics training, and sign a data use agreement.
“The Data Browser is the start of much more to come,” Dishman added. “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.”