COVID-19 has hit some communities very hard. That has put new attention on a long-term problem in the United States — health disparities.
Health disparities are differences in health that harm disadvantaged communities. Understanding what causes these differences is key to addressing them. DNA alone does not explain the big differences in people’s health. Researchers are looking closely at other variables that affect health. These factors include social determinants of health, such as income and environment; access to health care, healthy foods and educational opportunities; and discrimination.
When researchers look for answers on how social factors affect health, the data is often missing, incomplete or does not include enough people or diversity. In other cases, information about social factors may be available, but it is kept separate from health data. That can keep researchers from seeing the big picture.
The NIH’s All of Us Research Program is working to sign up one million participants. The goal is to build one of the largest, most diverse research databases to create a detailed picture of health to help speed biomedical research breakthroughs.
The program brings together information about people’s biology, environment and life circumstances. This unique blend of data, contributed by All of Us participants, can help researchers learn more about why people develop certain conditions, the effect of different treatments, and how social factors affect health.
Martin Mendoza, PhD, the program’s director of health equity, explains that many factors can affect our health, but without data that is both inclusive and diverse, it can be nearly impossible to see patterns and common threads.
“When researchers can access the data they need, it’s like finding a treasure trove of keys,” said Dr. Mendoza. “The data can help lead researchers to unlock new ways to improve people’s health.”
The NIH program is working to tackle one of the biggest obstacles in eliminating health disparities: many minoritized and underserved communities have been left out of research in the past, leaving a gap in understanding of what makes people — and their health needs — unique.
“As a breast cancer survivor and black woman, it’s not ok that people like me are more likely to die from our disease than others. We’ve been invisible to researchers for too long,” said Joyce Brown, an All of Us Participant Ambassador. “This program has given me the chance to potentially improve the health of future generations, but that can only happen if we all come to the table.”
Participants like Brown are having an impact. So far, more than 435,000 adults have joined the program, more than 300,000 of whom have completed all the initial steps of the program, including answering surveys, allowing access to electronic health records, and sharing biosamples. About 80% come from communities that have been historically underrepresented in biomedical research, which includes racial and ethnic groups who comprise about 50% of program participants.
“COVID-19 brings renewed urgency, but the need to solve the underlying causes of health disparities that exist in cancer, heart disease, stroke, diabetes and most other disease areas isn’t new,” said Dr. Mendoza. “The people who choose to join us in this historic effort and participate in the All of Us Research Program are essential partners in opening the door to a better future, in their own health, and the health of their families, friends and community.”
People interested in learning more about enrolling can visit allofus.health/mat.