A million people. At least.
All of Us wants to populate its medical database with that many examples of personal health. The aim is to help doctors personalize their treatment of disease.
“So much of what we’ve done in medicine over the years has not taken into account individual differences,” said former National Institutes of Health (NIH) Director Francis Collins, in a promotional video for the project.
“We’re really building a fundamental base of knowledge about how humans stay healthy or get sick and what to do about it. I think the practice of medicine will be altered in profound ways,” Collins said.
All of Us is a national trove of medical information and it just got a $54 million grant to try to enlist people who will bring more diversity to the database. The recruitment project is led by San Diego’s Scripps Research Institute.
All of Us was created during the Obama Administration. Since then, the collection of personal medical stories has gotten well on the way to the program’s million-person goal.
“We now say at least a million and we’re about halfway there,” said Scripps Institute's Julia Moore Vogel. “So we’ve recruited about 500,000 folks. There’s data now in the database that’s available to researchers on, I believe, more than 450,000. There are thousands of researchers accessing the data and many publications are already coming out.”
Vogel is program director for The Participant Center (TPC), a nationwide consortium. TPC got its grant from the NIH to recruit, and retain volunteers. She said the key is to get people who represent all of America.
“One of our goals is that 50% of the cohort be made up of people who self-identify as part of a racial/ethnic group that is historically underrepresented by medical research, i.e. non-white individuals,” Vogel said.
But they also want people who are diverse, in terms of their health.
“So in addition to race and ethnicity, that includes things like disability, low economic status, sexual gender minorities, etc.,” she said.
The goal of making medical treatments precise, or personalized, means understanding a wide range of human genetics and diseases. People who volunteer to be part of All of Us fill out a survey and, typically, provide a biological sample of blood or saliva.
It’s not just a snapshot of a person. Their health will be tracked by the program for ten years.
Having so many health examples in one database means doctors, who access it, can treat a patient’s diseases by finding other people out there whose health is very similar to them.
“It doesn’t really work like a one-on-one. It’s not like ‘find my twin’ you know,” said Amy Sitapati, who manages All of Us for UC San Diego Health. “The database is, like, finding the people who are kinda like me and how do I compare to anybody else.”
And what do volunteers get out of it? If they provide a biological sample, they’ll have their genome mapped and they can get some good information about their health risks.
And if they want, All of Us can check their genome and find out where their ancestors came from. People who want to participate can visit the All of Us website or call 858-265-1711.
