By Rachel Crumpler
A colorful bus with the words “All of Us” on it is crisscrossing the nation, stopping in cities for days at a time — including a stop last week in Charlotte.
Folks traveling on the bus aren’t stopping at tourist sites for adventure and exploration. Instead, they’re spending time in the parking lots of local community partners, such as colleges, community centers and libraries, with an ambitious goal of enrolling a million people — or more — of all backgrounds to participate in medical research.
Workers with the National Institutes of Health’s All of Us Research Program are working to engage community members across the country whose demographics have been historically underrepresented in medical research. Their goal? To build one of the most diverse health databases in history.
Martin Mendoza, director of health equity for the All of Us Research Program, said that historically — and even today — medical research has primarily studied folks of European ancestry, leaving out a variety of racial groups, people with disabilities and sexual and gender minorities.
“Previous studies have just not been that diverse and inclusive,” Mendoza said. “We want to make sure that we are different — that we are including people from all parts of the U.S. By including all of these diverse demographics, we are going to have a dataset that will help ensure that future medical discoveries will work equally well for all populations.”
The All of Us Research Program mobile exhibit called the Journey spent time in Charlotte last week, parking at the International House, a nonprofit that serves the immigrant community, to recruit people from all walks of life to participate in the research.
On Wednesday, Charlotte resident Samson Therasse rolled up his sleeve to be part of the research program. He answered survey questions and shared medical information, then he donated blood and urine so researchers could sample his DNA.
After hearing about the All of Us Research Program and its goals, Therasse said it was easy to get on board. He saw the promise of benefits for himself and the rest of society.
“It’s exciting to have the opportunity to learn about yourself and about us,” Therasse said.
Engaging underrepresented groups
Therasse is one of more than 434,000 people across the United States who have contributed to the large research database, providing a biosample of blood, saliva, urine or all three. As of early April, 2,220 participants are in North Carolina, according to program data. Since 2018, more than 450 North Carolinians have joined through the mobile exhibit, which has spent more than 40 days in various cities across the state, with more dates to come.
The program is open to adults of all backgrounds and health statuses, even if they’re currently facing an illness. By taking part, participants can learn more about their own health, including information that comes from their DNA such as genetic ancestry and whether they may have a higher hereditary risk for certain health conditions.
Learning personal results has attracted many people to sign on, tour manager Brave De La Cruz said.
The mutual exchange of information is key to the program, Mendoza said.
“We don’t want this to just be a one-way street where we are receiving data from our participant partners,” he said. “We want it to be a two-way path.”
Another factor that motivates people to participate is “being the change, being the diversity,” said Kimberly Tran, a tour manager who is Vietnamese.
Tran has seen firsthand how a one-size-fits-all approach to medicine doesn’t work for all people: Her father has COPD and has been given many medicines that have not worked for him. That’s part of what convinced her to work with the program.
“Medicine needs to be better,” Tran said. “It just doesn’t fit everyone.”
Once Tran explains how everyone has a different makeup, from genetics to sexual orientation to environment, she said they understand the power of their contribution.
About 80 percent of participants nationwide belong to communities that have been historically underrepresented in biomedical research, including almost 50 percent from racial and ethnic minority groups, according to program data.
Mendoza said the diversity of the data is fairly unprecedented in the clinical research realm, noting that, in general, about 90 percent of research populations are of European ancestry.
“There has been in the past this perception that it’s difficult to enroll underserved populations — that they cost more money, they take more time,” Mendoza said. “What we’re trying to show here is that’s not necessarily the case, that if you plan early in advance, that if you reach out to communities and you work with trusted voices in those communities, that this can really be a reality for everybody and that you can include diverse participants and include them at a very significant rate.”
An emphasis on diversity in research needs to be standard, Mendoza said. After all, to tackle health disparities, it helps to have data to understand the scope of the problem.
“We don’t just want it representative from a ‘it’s the right thing to do’ perspective,” Mendoza said. “It’s important from a scientific perspective because obviously if we need our medical products to be applicable and work equally well for all populations, the only way to really ensure that happens is to make sure that the participants in biomedical research reflect the diversity of the United States.”
Powerful research tool
Researchers are already putting All of Us Research Program data to use to understand health and disease, identify opportunities to reduce disparities and provide more tailored care.
More than 4,400 active research projects are underway leveraging this data, according to the program’s Research Projects Directory. For example, researchers from Yale University are using the data to analyze risk factors and disparities in cardiovascular health among racial groups. Another study team is using the data to determine the prevalence of autoimmune diseases in the United States and exploring how often they occur among diverse populations.
172 researchers in North Carolina are tapping into the data.
“By having all this data in one place, it’s going to make any research discoveries that come from it more equitable, more diverse, more inclusive, more relevant to people,” Mendoza said.
For example, over 40,000 Latino individuals from across the country are represented in the All of Us dataset — thus, it currently houses the largest Latino sample of its size. Researchers at the University of Miami used this data to test the theory that Latino individuals have similar or better health outcomes than their non-Latino counterparts, despite tending to have lower income and education levels — something known as the “Hispanic Paradox.” While other studies have argued this paradoxical finding is the case, the University of Miami researchers found that participants in the All of Us dataset actually have a higher, not lower, prevalence of cardiovascular disease than white participants. In some cases, they have more heart disease than Black participants.
Overall, Mendoza said the hope is that the detailed and diverse data collected through the All of Us Program will help advance more tailored approaches to treat and prevent diseases. This “precision medicine,” in which health decisions are personalized based on individual variability in genes, environment and lifestyle, is the future, he said.
“If we don’t craft our medications, our medical devices and our vaccines to account for that diversity, we’re just really going to be back in the same place that we’ve been at for so long, which is this sort of one-size-fits-all approach,” Mendoza said. “I think it’s clear that it’s not working, and so we need to diversify. We need to include the diversity of the U.S. in our biomedical research.”
HOW TO JOIN
- People over the age of 18 who are interested in participating can enroll in the All of Us Research Program while visiting the mobile exhibit, or they can sign up free online. For individuals who do not enroll at the mobile exhibit, a saliva kit can be sent to your home and mailed back or a home visit can be scheduled for samples to be collected.
- Upcoming mobile exhibit dates in North Carolina:
- Duke University: April 10-13
- Winston Salem State University: April 14-21
- Mexican Consulate in Raleigh: April 24-25
- El Centro Hispano in Durham: April 26-28
- Plans to visit Jacksonville in mid-September and Spring Lake in October