ST. LOUIS — Researchers here have joined a national effort to build the largest and most diverse database of human health information in the U.S.
The project, called All of Us, aims to improve medicine and health care, especially for minorities, by diversifying the demographic and medical data from which researchers can draw as they help doctors diagnose and treat their patients.
The database will also lay the groundwork for personalized medicine, where every patient gets an individualized treatment plan based on their DNA, environment and lifestyle.
“Instead of assuming that one therapy will work the same way in all people with a condition, precision medicine works to tailor the therapy to each particular person,” said Kimberly Enard, associate professor in the College for Public Health and Social Justice and co-principal investigator for the All of Us project at SLU.
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For decades, biomedical research has disproportionately included only some parts of the human population — typically, white men — leaving others at a medical disadvantage. Now, St. Louis University and SSM Health have joined the All of Us Research Program, run by the National Institutes of Health.
The region’s large Black population — roughly 43% in the city and 24% in St. Louis County — is important to researchers as they seek to provide clarity as to why disease progression and treatment response can differ between people, Enard said.
For example, a Black woman in her mid-20s may have a different response to a medication than a clinical trial group of all white men older than 50. Or a therapy tested only on non-smokers in rural Missouri might have different side effects for a lifelong smoker living in downtown St. Louis.
“In St. Louis, our main target is the Black and African American communities. African Americans make up around 12% of the U.S. population but only 5% in research studies,” Enard said. “When we are trying to discover the levers that drive poor health and wellness, and what could alleviate those problems, there’s not sufficient data.”
Organizers expect the All of Us database will one day house diverse medical information from more than a million people. They want 75% of the data to be from groups underrepresented in biomedical research, such as racial/ethnic minorities, lower socioeconomic status communities, the LGBTQ+ community and those with limited access to health care, said Dr. Janeth Sanchez, acting director of health equity at the NIH. She said more than 800,000 people are now enrolled.
Fewer than half belong to racial or ethnic minorities, said Meredith Daly, senior press officer for the All of Us Research Program at the NIH.
“We’re trying to move beyond the one-size-fits-all medicine,” said Rick Grucza, an epidemiologist, professor and co-principal investigator of the St. Louis University-based research team.
Other factors that may effect health care outcomes include gender identity and sexual orientation, health habits, access to health care, and disability status. The effects of these variables can create health disparities — preventable differences in health or health care between groups that stem from larger societal inequalities.
“Anybody in the country can log in and join,” said Jeffery Scherrer, vice chair for research, professor and co-principal investigator for the All of Us project at SLU. “But our focus is on underrepresented groups.”
To reach more potential participants, the NIH created The All of Us Journey: a mobile exhibit of interactive games, puzzles, videos and augmented reality that is traversing the country visiting communities historically underrepresented in medical research. The exhibit is tended by a multilingual staff on its third trip now, looking to add to the 14,000 people it has already enrolled.
“You can’t have equity in the outcome without equity in the process,” said Sanchez.
Finding a way to reach people who don’t trust the medical establishment is a necessity, researchers said.
“The biggest thing is the way that Black people were treated in research, that’s partly what we’re trying to address,” said Scherrer, citing the Tuskegee syphilis study as the most famous example of this mistreatment.
In the Tuskegee study, almost 400 Black men with syphilis were studied over what was supposed to be only a six-month period but turned into 40 years. Over this time, these men were untreated for syphilis — despite penicillin being a viable treatment option — and unaware that the nature of the study was to observe disease progression when left untreated. More than 100 men died as a result of this deception.
“There is a legitimate fear and mistrust of the medical and research communities,” Scherrer said.
The St. Louis team is working to build trust with traditionally marginalized communities so that potential participants can feel comfortable giving informed consent, said Enard.
“We’ve been doing a lot of work with community leaders so they can work with us to ensure the different groups in this area get what they need,” she said. “Medicine is not a one-size-fits-all; engagement is not either.”
Once they are enrolled, participants will fill out surveys about their health habits and behaviors and grant researchers access to their anonymous medical records. Participants will also visit a clinical site when they enroll to get their blood drawn for DNA testing and have their height, weight and blood pressure recorded.
While there aren’t any follow-up appointments required of participants once they donate samples for genetic testing, in an effort to move away from “helicopter research,” All of Us provides way for participants to continue being involved in medical studies, according to Sanchez.
“If you are engaged with the program, there are opportunities to participate in ancillary studies through other institutes at the NIH,” she said.
The diversity of researchers who will use all this data parallels both the diversity of participants and the data collected, according to Daly. There are already 11,500 researchers registered to use this data, many at institutions dedicated to serving racial and ethnic minorities.
“Generation to generation, as we’re not represented in medical studies, we’re not learning how to help future generations,” Enard said. “With this program, we can ask: What can be done to prevent another generation of suffering? It’s intended to be something for the public good.”
Join the All of Us project in St. Louis online or by calling 314-977-7600.
Editor's note: This story was updated 3:05 p.m. Monday.
View life in St. Louis through the Post-Dispatch photographers' lenses. Edited by Jenna Jones.