All of Us Participants Are Fueling Mental Health Research

May 17, 2024
Two senior-aged men review All of Us Research Program information on a kiosk at an outdoor event.

Participants with the National Institutes of Health’s All of Us Research Program are supporting new areas of mental health research. In total, more than 185,000 participants have been diagnosed with a mental health condition at some point in their lifetime and are sharing their experiences with the program to help advance research.

According to the Substance Abuse and Mental Health Services Administration, about 1 in 4 American adults, or almost 60 million people, had a mental health condition in the last year. The data contributed by participants, like Participant Ambassador Ray Lay, can help researchers learn more about mental health conditions. Additionally, researchers can explore areas like early risk factors for mental illnesses, prevention strategies, the role technology can play in supporting mental health, and differences in people’s responses to treatment.

All of Us participants’ conditions reflect what millions of Americans live with and represent a unique dataset for research. Data collected from electronic health records and surveys indicate that more than:

  • 117,000 participants have been diagnosed with mood disorders, like depression or bipolar disorder
  • 112,000 participants have been diagnosed with anxiety disorders
  • 46,000 participants have been diagnosed with attention deficit and hyperactivity disorder (ADHD)
  • 43,000 participants have been diagnosed with substance use disorders    
  • 25,000 participants have been diagnosed with post-traumatic stress disorder (PTSD)
  • 6,500 participants have been diagnosed with schizophrenia

And, almost 125,000 participants have had more than one mental health condition.

“The data contributed by participants make All of Us one of the largest, most diverse datasets in the world that researchers can access to study mental health conditions,” said Holly A. Garriock, Ph.D., chief cohort development officer for the All of Us Research Program. “The participation of people from communities all around the country means that researchers can explore questions that haven’t been adequately explored, and that the knowledge we gain from research using All of Us data can benefit everyone.”

While mental health conditions can affect anyone, individuals from racial and ethnic minority communities and people with low income or living in rural areas are less likely to have access to mental health care. About a quarter of All of Us participants who have completed surveys say they have seen a mental health professional recently, but 1 in 12 say they could not afford the costs of seeing one.

“While mental health conditions are common, each of us has characteristics and features that not only influence our risk of developing them, but also our means of coping with them. These include the stresses we face in our day-to-day lives, variations in our DNA, our family histories, environmental exposures, and even stress from our financial situations,” said Geoffrey Ginsburg, M.D., Ph.D., chief medical and scientific officer of the All of Us Research Program. “The All of Us dataset allows us to uniquely to approach the causes of mental health conditions and understand their impact on the participants who experience them.”

Nearly 400 research projects using All of Us data are underway on a range of mental health topics, driven by researchers like Dr. Normarie Torres-Blasco, who is exploring the relationship between mental health conditions and chronic illness in the Latino community. Overall, more than 30 papers have been published examining important aspects of mental health:

  • Researchers used All of Us data to explore how the pandemic affected the mental health of people who were blind or had low vision. They found that during the pandemic, anxiety and depression were more common in people with blindness or low vision than in other people.
  • In one of the first and largest studies of its kind, researchers found that lesbian, gay and bisexual (LGB) cancer survivors have lower quality of life when compared to a similar group of heterosexual cancer survivors. The findings could inform strategies for supporting LGB cancer patients.
  • Researchers examined what kinds of social support have the greatest positive impact on mental health and are most protective against depression. They found that having emotional support and positive social interactions were more protective than tangible support (in the form of favors or assistance), but that having all three were most protective against depression.

The ability of researchers to make new discoveries about mental health conditions will grow as the data contributed by All of Us participants grows. Building on the data that 100,000 program participants contributed through the COVID-19 Participant Experience (COPE) survey, All of Us launched two new surveys in 2023 that can inform mental health studies, called the Emotional Health & Well-Being survey and the Behavioral Health & Personality survey.

Another initiative aims to provide new insights on what leads to mental disorders, how they develop, and the most effective ways to treat them. Exploring the Mind, in partnership with the Many Brains Project and the TestMyBrain team, invites All of Us Research Program participants to complete online games that measure abilities like attention span, decision-making, and emotion recognition.

“Not only does the data from these game-like assessments help inform mental health research specifically, but also offers a broader use,” said Garriock. “When combined with the additional data donated by thousands of diverse participants, such as survey responses on discrimination, loneliness, and other social determinants of health, genomics, and electronic health record information, the result is a dataset that becomes a new gold standard for including behavioral data in health research.”

If you are experiencing suicidal crisis or emotional distress, the Lifeline provides free and confidential emotional support in both English and Spanish to people 24 hours a day, 7 days a week, across the United States (including U.S. territories). Call or text 988 to connect with a trained crisis counselor if you or someone you know needs help. Support is also available via live chat at TTY options for Deaf and Hard of Hearing: Use your preferred relay service or dial 711 then 988. If you are experiencing an emergency, please call 911.

You may also find some of the resources on this page helpful. The resources describe steps people can take to feel better.