The national “All of Us” Research Program, which aims to accelerate the prevention and treatment of illness by recruiting a million or more research participants, provided a glimpse this week into its rapidly growing databank with the beta launch of its publicly accessible Data Browser application.
Since the program opened to participants a year ago, more than 143,000 people across the country have enrolled and completed the initial steps of the research protocol. Eighty percent are from communities historically underrepresented in research. More than half are from racial and ethnic minority groups.
So far, the program has collected more than 80,000 electronic health records and over 143,000 biological samples, from which participants’ DNA will be extracted. Ultimately this information will yield important insights into thousands of medical conditions, medications and medical procedures.
The Data Browser represents the first major product of the program’s Data and Research Center. Josh Denny, MD, MS, Vice President for Personalized Medicine at Vanderbilt University Medical Center, serves as the center’s principal investigator.
“The Data Browser provides a ‘first look’ at the breadth and depth of data that participants are sharing in All of Us,” said Denny, professor of Biomedical Informatics and Medicine at Vanderbilt University School of Medicine.
“Our goal is to 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,” he said.
“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 also encourage researchers to take a look at the breadth and depth of data we’ve begun gathering and consider its possibilities for their work.”
People 18 and older can join the program by logging on to https://www.joinallofus.org. They will be asked to provide health and lifestyle information through online surveys. They also can grant access to their electronic health records, which will provide researchers the ability to learn about patients’ diseases and treatments.
Some participants are asked to provide blood and urine samples and have basic physical measurements taken, such as height and weight. The data will be available to researchers to support potentially thousands of studies aimed at:
- Increasing wellness and promoting healthy living;
- Reducing health disparities and improving health equity in populations that are historically underrepresented in research;
- Advancing risk assessment and prevention strategies, and providing earlier and more accurate diagnosis; and
- Improving health outcomes and reducing the burden of disease by improving treatment and developing “precision medicine” interventions.
To safeguard participant privacy, All of Us stores all data on a secure, encrypted platform. Personal information that can identify participants is removed from the data used by researchers.
Patient information will not be downloaded to individual researchers; rather, researchers will do their analyses within the All of Us secure platform. DNA and other biological samples are stored in a secure biobank.
Later, the program will 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.
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.
VUMC faculty and staff who contributed to achieving this milestone include:
- Regina Andrade, William Dolbeer, Asmita Gauchan, Kayla Howell, Kayla Marginean, Chris Pua, Jon Scherdin, Helen Sullivan and Stephen Yeargin in the Vanderbilt Institute for Clinical and Translational Research;
- Lauren Biggers, Robert Carroll, PhD, Srushhti Gangireddy, Paul Harris, PhD, and Morgan Higby-Flowers in the Department of Biomedical Informatics;
- Melissa Basford, Office of Research; Andrew Hutchinson and Bill Schultz, VUMC Information Technology; Brian Freeman and Katrina Hanner.
To learn more, visit www.ResearchAllofUs.org.
