- The National Institutes of Health unveiled the beta version of its interactive Data Browser, offering a first glimpse of health research data gathered through the institutes' All of Us research program.
- Program participants, researchers and others can use the online tool to probe summary data and learn more about the All of Us pool of participants. In the future, researchers will be able to access data for use in studies that could lead to more personalized ways of preventing and treating disease.
- NIH launched All of Us one year ago with the goal of recruiting 1 million people to advance precision medicine.
Personalized medicine is changing the way people think about healthcare. Instead of a one-size-fits-all approach, doctors and scientists are targeting specific genomic patterns and mutations to design drugs and diagnostics — aimed at creating better, more personalized patient outcomes.
The movement has been building for the past few years.
In late 2017, Google launched Deep Variant, an open source artificial intelligence tool that creates a profile of a person's genetic blueprint using sequencing data. The idea is to pinpoint specific genes or variations to help physicians better manage disease states.
President Barack Obama announced the national Precision Medicine Initiative in his 2015 State of the Union address. The initiative called for public-private collaborations to collect information about and sequence the genomes of 1 million Americans.
Congress increased protections for federally funded research in the 21st Century Cures Act, authorizing NIH to spend $4.8 billion to fund the Precision Medicine Initiative, Cancer Moonshot and Brain Research through the Advancing Innovative Neurotechnologies (BRAIN) Initiative.
To date, All of Us has enrolled more than 192,000 people from all 50 states. Of those participants, more than 143,000 have finished the first stage of the program — completing the first three surveys, agreeing to share EHRs, having their physical measurements taken and providing blood and urine samples for whole genome sequencing and analysis. According to NIH, 80% of those represent historically underrepresented study populations, including 51% from racial and ethnic minorities.
"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 and professor of biomedical informatics and medicine at Vanderbilt University Medical 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."
The Data Browser includes curated information from initial surveys, including basic demographics, overall health and lifestyle behaviors; physical measurements such as height, weight, blood pressure and heart rate; and EHR data. NIH said it hopes to eventually offer a more complete picture of the pool of participants, including data on race, ethnicity and gender identity.
This winter, NIH plans to roll out the Researcher Workbench, which will allow researchers to access the All of Us data set for in-depth analysis. Researchers will need to register, undergo specific ethics training and sign an agreement regarding use of the data.