"All of Us" Research Program Offers First Glimpse into Participant Data
As the University of Wisconsin-Madison, in partnership with UW Health, marks its first anniversary of active enrollment in the National Institutes of Health’s (NIH) historic All of Us Research Program, the program is offering a first look at the data that participants are sharing for health research.
The new All of Us Data Browser, in beta release, is an online tool that participants, researchers and other members of the public may use to learn more about the All of Us participant community and explore summary data.
“It has been truly remarkable to see people in our community, from all walks of life, step forward to contribute their health information, which could very well improve health care for generations,” said Dr. Beth Burnside, co-principal investigator, All of Us – UW-Madison. “With the release of the Data Browser, we’re excited that our participant community can, now, get a glimpse of the resource they’re helping to build and actually get a feel for its tremendous potential.”
To date, more than 192,000 people, nationally, 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.
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.
Locally, community partners also provide input on other aspects of the All of Us program, including effective outreach and communications strategies.
“Our community organization partners, including Access Community Health Centers and the Catholic Multicultural Center, have provided invaluable guidance for meaningful engagement with Madison’s communities of color and other underrepresented populations,” Burnside said.
This winter, the program plans to launch the Researcher Workbench, making its initial set of data available for in-depth analysis. Researchers seeking access to the data 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.
UW-Madison, which also has an active recruitment and enrollment team in Milwaukee, is joined in the Wisconsin consortium by Marshfield Clinic, the Medical College of Wisconsin and Versiti Blood Center of Wisconsin.
“It’s incredible how far All of Us-Wisconsin has progressed in its first year,” Burnside said. “We look forward to interacting with our fellow researchers and community members to help ensure the success of this critically important program.”
Date Published: 06/04/2019