The National Institute of Health’s (NIH) “All of Us” Research Program now has 15 more community organizations and healthcare provider associations that have signed on to raise awareness about the program and its potential to advance precision medicine.
The All of Us Research Program, established by the White House in 2015, aims to advance precision medicine by studying the health data of 1 million diverse Americans over the next five years. It’s slated to launch next month, at which point researchers will begin to collect and analyze the health data of the participants. All of Us is currently in an enrollment beta phase.
Program participants will share information over many years in a variety of ways, through surveys, electronic health records (EHRs), physical measurements, blood and urine samples and wearable technologies. Researchers of all types, from citizen scientists to investigators in academia and industry, may request free access to the data, which will be de-identified to protect participant privacy. Their analyses may yield new insights about how individual differences affect health and disease, potentially leading to more tailored treatments and prevention strategies in the future, according to All of Us officials.
“Our partner organizations have been invaluable in helping us reach diverse populations, including those that have been historically underrepresented in research,” said Eric Dishman, director of the All of Us Research Program. “We are excited to work with these groups to expand our efforts and continue building the community connections that we know are essential to our mission.”
Some of the new partner organizations announced are: the American Association on Health and Disability; the American Public Health Association; and the National Rural Health Association. “These organizations will play an integral role in sharing the All of Us message across the country and helping us understand the unique needs of their specific communities,” said Dara Richardson-Heron, M.D., chief engagement officer of the All of Us Research Program. Last November, All of Us similarly announced a group of 14 community stakeholders and provider groups that would partner up for the initiative.
What’s more, 22 additional individuals have joined the program to serve on All of Us committees, NIH announced. Seven individuals will serve on the program’s advisory and governing bodies—the Advisory Panel, Steering Committee and Executive Committee; while 15 individuals will serve on working groups and task forces to provide input on specific aspects of the program, such as research priorities, participant retention, privacy and security, and the meaningful return of information to participants.
In 2017 alone, the budget for All of Us was $230 million, of which $40 million came from the 21st Century Cures Act. Congress has authorized $1.455 billion over 10 years for the project, according to a recent New York Times piece, which outlined what it believes are some of the program’s struggles. The article noted that Geisinger and Kaiser Permanente, two of the most prominent health systems in the U.S., both declined funding to participate in All of Us, citing time constraints as the organizations are working on their own biobank efforts.
Nonetheless, Dishman has touted the success that All of Us has had in the beta period. As recently reported in a recent Politico eHealth newsletter, Dishman said the “program has met ambitious goals since kicking off in July 2016. Last May, All of Us started enrolling participants in a pilot phase to test and improve the program’s protocol, as well as a participant portal, a biobank, websites, phone apps, a cloud-based databank, a bilingual call center, software and different recruitment methods.”