The National Institutes of Health wants to shepherd a new era of medical research, and UC Irvine professors are taking the helm in Southern California.
You might have heard of the All of Us research program. Maybe you’re already part of it. The NIH describes it as a historic effort to collect and study data from more than 1 million Americans to accelerate medical breakthroughs. UCI researchers say they have never seen a health database like it, and its sheer magnitude is allowing them to answer medical questions more accurately and quicker than ever before.
Since 2018, more than 800,000 people nationwide have consented to participate in the All of Us study, sharing their electronic health records, physical measurements and DNA with researchers. In Southern California, UCI has enrolled close to 28,000 participants, and it has big plans to push that number higher.
This summer, the university received a $4 million grant from the NIH to lead a consortium along with investigators from Loma Linda University Health and MemorialCare to boost All of Us enrollment across the region. Over the next five years, UCI could receive another $43 million from the NIH to increase outreach to research participants and analyze data, according to a school spokesperson.
The key to the All of Us program is its inclusivity, said Hoda Anton-Culver, distinguished professor of medicine at UCI and leader of the All of Us Southern California consortium.
Traditional medical research has historically underrepresented minorities whose communities have had limited access to healthcare, Anton-Culver explained. The All of Us program not only includes vast information — even genetic information — about nearly 1 million participants, but it also aims to build a participant pool that reflects the diversity of the country. Anton-Culver said researchers can use that new information to study all sorts of novel health questions and, ultimately, advance more equitable health outcomes.
“Our diversity in our communities in Southern California is just really amazing — diversity not only by race and ethnicity or by socioeconomic status, but also by exposure and by ways of life,” she said. “By including diverse populations in our data, we understand health and disease in all populations.”
She and other UCI doctors hope their research can lead to what they call “precision medicine,” essentially a type of treatment designed to work effectively for a patient based on their identity. That’s not always the case for many patients now who rely on medications brought to market using clinical data that might not be representative of the country’s diverse population, Anton-Culver said.
Brit Cervantes, a program coordinator and community education specialist for UCI’s pediatric gender diversity program, put the consequences of that bluntly:
“If you’re not counted then you don’t count,” Cervantes said.
In other words, doctors are limited by the data available to them when they make medical recommendations for patients from underrepresented populations. That can have profound consequences for the way a patient receives medical care, said Michael Hoyt, UCI professor of population health and disease prevention.
Hoyt uses All of Us data to study how cancer affects the psychological health of young adults. Specifically, his recent work focuses on studying quality of life for young lesbian, gay and bisexual cancer survivors, a group that he said has gotten little attention from the medical research community for lots of reasons, including taboo, disinterest and lack of data.
Historically, lots of medical research refrained from collecting data about patients’ gender identity and sexual orientation, Hoyt said. And, prior to All of Us, he was unaware of any database large enough to study a meaningful number of young adult LGBT cancer survivors. It’s hard — sometimes even misleading — to draw significant conclusions from statistical research without a large number of participants, he explained.
But since the All of Us data is inclusive of so many people and so much of their health data, Hoyt’s been able to break ground in this area with the goal of helping healthcare providers understand unique challenges and opportunities to better serve young adult cancer survivors.
“In terms of the nature of health, in this case in terms of helping cancer patients, the different identities and different aspects of who we are matter,” Hoyt said.
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Want to learn more about participating in All of Us research? Get additional information about eligibility, privacy and enrollment benefits or sign up at joinallofus.org.
“For instance, most cancer treatments affect sexuality and sexual functioning in really profound ways, and the healthcare system overall has done a really poor job of being able to treat cancer patients in terms of their sexual health after cancer,” Hoyt said. “So you can imagine if we’re not doing a very good job for most patients, we’re doing a really, really bad job for lesbian, gay and bisexual folks.”
More than 10,000 researchers around the world use All of Us data, including 150 at UCI.
Despite their initial concerns about releasing health and genetic data to researchers worldwide, Cervantes said that as a trasngender individual they support how All of Us uniquely enables the type of inclusive studies pursued by Hoyt.
“I recognize how important it is to have our community participate in research,” Cervantes said. “This is a space where we are actually being asked about our identities. We’re being asked about things that are important for our health as LGBTQ people,” they said. “We can make medical research more diverse and address some of the lack of inclusion. It’s a start, and I think it can lead to a big impact.”
The initial screening process to become an All of Us research participant can seem daunting and invasive. Medical personnel swab for DNA and gain access to your health history. Cervantes had questions and concerns related to privacy, which they said staff answered every step of the way.
“There’s a history of discrimination against LGBT individuals in all settings, so it’s very reasonable and a valid concern to have when it comes to sharing your personal and private information with any institution, especially one like the All of Us research project where it’s such a large database,” Cervantes said. “I just think it’s worth remembering that this is consent-based. They will explain the process, and you’re able to revoke your consent at any time.”
Importantly, all the health data in the database is de-identified. Anyone who accesses the database will see an individual with Cervantes’ health profile, but they will not be able to associate that profile with Cervantes’ name.
Anton-Culver, who has spent her career assembling and managing large medical research databases, acknowledged it’s a challenge to communicate to people the benefits of joining the program and the safeguards in place for their privacy. This is particularly important, she said, in communities that have traditionally been underrepresented in medical research and are concerned about stigmatization from inclusion in research that considers genetic information.
“This is a very important issue, and the program has a board, which I am a part of, and the board reviews studies for a potential of stigmatization of a particular group of people based on characteristics such as sexual identity, race or ethnicity. All of these characteristics are not the cause of a disease,” she said. Rather, she said, genetic and demographic information can help reveal patterns of environmental factors, often affected by a history of discrimination, that might affect disease — such as exposure to pollution, diet and access to healthcare.
“That’s what you want to find out: What are the environmental factors causing disease, so you can do some prevention?” she said. “It’s not the group that is causing the disease, it’s the environmental factor that is causing that disease.”
Collecting genetic information also enables researchers to reveal to every participant estimates of their unique susceptibilities to diseases and responsiveness to medication.
“I was a little worried about getting some of the genetic results because you never know what type of like health issues might be associated with your actual DNA,” Cervantes said. “I didn’t get anything back that was kind of surprising or scary in terms of those results. I think more than anything, it was interesting to know more about different things about my body that I wasn’t completely aware of. For example, one of the results showed how I metabolize medications a bit slowly and, because of that, I am more prone to experiencing some of the negative side effects of medications.”
With so much information to share, Cervantes said safeguarding health data against discrimination is an acute concern in the trans community. She said that with more than 600 anti-trans bills currently in consideration in 43 states, 165 of which are targeting healthcare access, “Not every person feels safe enough to disclose their gender identity or their sexual orientation because they fear potential stigma or discrimination.”
But the reason Cervantes ultimately did ties back to their belief in the mission of the All of Us project.
“We can add to the information that researchers like Dr. Michael Hoyt are using to try to address some of the specific needs of the community,” Cervantes said. “They’ll have access to this data, and that’s just one person out of all the people that can have access to our information and can make medical research more diverse and address some of the historical lack of inclusion.”
“I think it’s just starting to make a big impact,” Cervantes said. “But it’s just going to take more people for us to be able to do that.”
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