The NIH’s All of Us Research Program launched in May with a daunting task ahead of it — collecting demographic, health, behavior and genomic data from a 1 million person cohort comprised of demographics often underrepresented in biomedical research.
Speaking this morning at the Connected Health Conference in Boston, Dr. Dara Richardson-Heron, All of Us’ chief engagement officer, said that the institute is well on its way to the program’s unprecedented goal line.
“I am ecstatic to report that we just recently celebrated a very significant milestone,” Richardson-Heron said. “We now have over 100,000 participants who are registered and at some point in the process of joining the All of Us Research Program, and of those more than 65,000 have completed our full protocol. That’s a big deal.”
Notably, Richardson-Heron stressed that the program is meeting its diversity goals as well. Among the 65,000-plus participants who have completed the full protocol, 75 percent are from groups often underrepresented in modern medical research, and 50 percent are from racial and ethnic minorities.
“You might be looking at these numbers and saying, ‘Well, you have a long way to go to get to 1 million.’ And we do,” she said. “But these are large milestones to reach so quickly considering that we just launched nationally in May of this year.”
Along with enrolling the remaining 900,000 participants, Richardson-Heron said that the program is still looking to improve how the de-identified data will be made available to researchers. For now, that includes beta testing a browser for aggregated data later this year, an upcoming analysis tool for “approved researchers” and other features to improve the online experience.
“This is all to say that we are continuing to build this program,” Richardson-Heron said. “We know we have much more ahead of us, but we’re committed to pushing forward.”
Much like NIH’s Human Genome Project, All of Us is a large-scale and expensive research initiative. On the one hand, the dataset it promises could become the backbone of population health efforts for years to come.
“Today, much of our medical care is ‘one-size-fits-all,’ not tailored to the specific needs of the individual patient,” NIH Director Dr. Francis Collins wrote in a blog post announcing the program’s launch in May. “If we are to make the biomedical breakthroughs necessary to realize the full promise of precision medicine, researchers need a lot more data that takes into account individual differences in lifestyle, environment and biology. Such data will be hard to assemble unless lots of people like you come together through the All of Us program and volunteer to share information about their health, habits and what it’s like where they live.”
On the other hand, the publicly-funded initiative could fail to reach its lofty enrollment goals. As such, some have wondered whether the agency’s publicly-funded project will justify its cost, and whether extensive promises of health data privacy will stand the test of time.