The All of Us Research Program’s database of more than 770,000 people is proving to be a treasure trove for health researchers, who are using the program’s ground-breaking diverse data to uncover new insights.

Launched six years ago, the All of Us Research Program was created with a goal of recruiting 1 million people to share their health information with researchers. The program has an eye toward enlisting people who are often underrepresented in research data. About 80% of participants meet that definition, including people with disabilities, older adults and people of color.

“All of Us is the first national research program to focus specifically among communities historically underrepresented in biomedical research, aiming to reflect the diversity of individuals in the U.S.,” said Nguyen Tran, PhD, MPH, a social epidemiologist at Stanford University School of Medicine who uses the program database in his work.

Electronic health records, whole genome sequences, genotyping arrays, Fitbit records and health surveys are among the sources of data for All of Us, which is part of the National Institutes of Health. Program data is helping public health address health disparities by spurring research in prevention that is customized and tailored to people in differing communities. All of Us surveys addressing social determinants of health were recently added to the dataset.

Workbench data changing science
As of this spring, more than 9,700 research projects were registered through the All of Us Program’s Researcher Workbench. Studies that use the dataset are helping broaden health and medical understanding. For example, in a study published in November’s Journal of the American Society of Nephrology, researchers examined All of Us genomic and electronic health record data from 14,700 Black people in search of a gene variant that is linked to kidney disease.

The scientists discovered another previously unknown variant that can block harmful effects, which could lead to development of therapeutics and screening for those at risk, said Adriana Hung, MD, MPH, a nephrologist and epidemiologist at Vanderbilt University Medical Center and lead author of the study.

“The diversity in All of Us is an invaluable resource as well as the availability and ease of use of All of Us data,” Hung told The Nation’s Health. “All of Us is an amazing resource that offers genetic data on a diverse population.”

Another area of research that has benefited from All of Us data is LGBTQ+ health. Health insights on the population have been hindered because national data sources do not consistently ask about gender identity and sexual orientation. That means inadequate sample sizes have led to a vacuum of social and biomedical data.

All of Us, however, has robust self-reported information on gender identity, sex assigned at birth and sexual orientation. People who identify as asexual, gay, lesbian, nonbinary, bisexual, transgender and more are represented. The program links their information to other data sources such as electronic health records, which allows researchers to explore the health status of LGBTQ+ people with more objective measures of health.

In a study published last year in JAMA Network Open, researchers used the All of Us database to examine health histories of over 30,000 LGBTQ+ people and more than 300,000 heterosexual and cisgender people. They found that gender and sexual minority people experience anxiety and depression at a greater rate and were more likely to adopt harmful coping mechanisms such as tobacco use.

The findings are “consistent with research that links these inequities to experiences of minority stress — the mistreatment experienced by individuals due to their marginalized identities,” Tran, lead author of the study, told The Nation’s Health. “By connecting the disparities that we see in the data to social, legal and political mistreatment experienced by LGBTQ+ people, we can better identify policies and develop treatments to eliminate health disparities.”

Tran praised All of Us program officials for their quick responses to questions from researchers about using the dataset.

“All of Us has done a great job in providing resources to help research partners use their online workbench,” Tran said.

Another recent study using All of Us data shared new insights on discrimination and resilience. In 2020, All of Us implemented the COVID-19 Participant Experience survey to better understand the impact of the pandemic on people’s lives. A study published last year in Frontiers in Psychology used the data to look at mental health, discrimination and resilience.

Researchers found that people who scored high on resilience had better mental health after experiencing discrimination or in facing pandemic stress. Future research might explore how resilience is developed within diverse groups, researchers said, such as whether it is a personality characteristic, a product of a social, ethnic or cultural network or driven by another contributing factor.

More understanding could create approaches to building resilience for racial, ethnic, gender and sexual minority people.

Stephanie Cook, DrPH, MPH, assistant professor of social and behavioral sciences at New York University’s School of Global Public Health, and lead author of the study, plans to utilize the survey and other All of Us data in future research.

“All of Us is a very diverse dataset, which allows me to answer questions about sexual and gender minorities of color and other individuals at the intersection of multiple minoritized statuses in a way that I cannot do with other publicly available datasets, due to the smaller sample sizes of certain populations and the overall lack of identity diversity within them,” she told The Nation’s Health.

Staff at the All of Us Research Program booth answer questions at  2023's APHA's Annual Meeting and Expo.  (Photo courtesy EZ Event Photography)