All of Us – a mammoth effort by the National Institutes of Health to gather health data from one million Americans to accelerate and improve research into precision medicine – has launched a public beta version of a tool that allows users a first look into the program’s data set.
The unveiling of the All of Us Data Browser comes one year after the research program launched open enrollment for participants. Initially established by the White House in 2015, the publicly funded program has been enabled by the 2016 passage of the 21st Century Cures Act, which authorized $1.5 billion over ten years for the initiative.
The data browser is meant to give researchers initial insight into how the All of Us dataset could help answer questions and inform potential research efforts. Users can use the browser to look across medical procedures, health survey responses, measurements and conditions.
“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,” All of Us Director Eric Dishman said in a statement.
“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.”
NIH Director Francis Collins shared the early progress of All of Us at an event today in Washington, D.C. According to Collins more than 230,000 people have started the process of joining the research program and more than 142,000 have completed the program’s first research protocol.
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One of the major priorities of the research effort was to broaden the data sets available to advance precision medicine by engaging populations traditionally underrepresented in biomedical research.
On this end, the program has also seen early success, with more than 80 percent of participants coming from communities underrepresented in research and more than 50 percent being part of a racial or ethnic minority group.
All of Us collects a wide variety of health information including EHR data, genomics info, biosamples, physical measurements and survey information.
Earlier this year, Fitbit launched a research partnership with All of Us allowing users to upload fitness and wellness information like physical activity, heart rate and sleep patterns. All of Us researchers eventually plan to include more information sources like additional surveys and clinical imaging and claims data.
The idea behind All of Us is to follow program participants over a period of at least 10 years to better understand patients from a longitudinal perspective. All of Us partners with local community health centers and health systems to collect information for the initiative. Collins said that the program hopes to meet its 1 million participant goal by 2023.
All of Us is currently in the process of developing a “researcher workbench” which will be released in the coming months and allow users to filter, segment and analyze the program’s data set in more detail. Researchers looking to access this resource will be required to register, complete ethics training and sign data use agreements.
In an effort to safeguard privacy, All of Us only offers data in a de-identified, aggregated form and the public data browser limits the ability to analyze data using two or more variables such as age and sex.
“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,” Josh Denny, principal investigator of the All of Us Data and Research Center, said 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.”
Picture: xubingruo, Getty Images
