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All of Us participant data is helping researchers make new discoveries on how genes, experiences, and lifestyle all affect health. But health doesn’t just include the body — it also includes the mind.
Researchers who use All of Us data are already doing important work on mental health. For example, they have found black patients with bipolar disorder are less likely to have gold standard treatments compared to white patients.
Researchers can make many more discoveries with your help. That’s why the program has released two new surveys on mental health and well-being. Read on to learn what is in these surveys, and how they may help lead to better mental health for people in the future.
Why Study Mental Health and Illness?
If health is the overall state of your body, mental health reflects your overall state of mind. If you experience mental health problems, your thinking, mood, and behavior could all be affected.
Mental illnesses are health conditions that can affect your mental health. Many people deal with these conditions. The National Institute of Mental Health estimated 1 in every 5 people in the United States were living with a mental illness in 2021. Some of the most common illnesses are depression and anxiety disorders. The rates of these disorders rose by about 25% during the COVID-19 pandemic. Any mental illness should be taken seriously, no matter how severe it is. They can interrupt daily life, or even put someone at greater risk for suicide.
And we still have so much to learn. Why do some people suffer from mental illness while others don’t? How do we come up with better treatments for those who are sick? These are the same kinds of questions we ask about our body’s health. But research on mental health is still very new. Many new treatments for suicide or suicidal thoughts have only been developed within the past 20 years.
One reason research has been slow is because people have been reluctant to talk about mental health. People who struggle with mental illness have sometimes been afraid or embarrassed to share their experiences. They have worried they’ll be judged by others or treated differently.
“The truth is, mental illness is a disease just like every other disease,” says Brian Ahmedani, Ph.D. Dr. Ahmedani studies mental health and ways to prevent suicide. He is also the Director of the Center for Health Policy and Health Services Research and the Director of Research for the Department of Psychiatry at Henry Ford Health in Detroit, Michigan.
Dr. Ahmedani is one of many people helping All of Us be better prepared to talk about — and support research on — mental health. He has developed trainings for staff who might help All of Us participants take these surveys over the phone.
Surveys on Mental Health and Well-Being
One of the goals of All of Us is to share information back to our participants. We don’t provide health care, but some information can help you start a conversation with a doctor. For example, if you provide physical measurements at an All of Us partner site, we’ll let you know your blood pressure. If it’s high, we’ll tell you that you may want to see a doctor.
In the same way, these surveys can help you learn about mental health and may give you topics to discuss with your doctor. You can also get reports from these surveys that will tell you about your personality. And researchers can use the answers you share to explore mental health.
These surveys will ask questions about:
Researchers can use answers to these surveys and other All of Us data to learn who is affected by mental illness and how it develops. They can also learn how mental illness affects people who have been left out of research in the past.
The program also wants to give you information. Your personality trait results could give you insight into how your personality plays a role in your day-to-day life. You can learn about how you handle stress or what kinds of activities may help you relax.
All of Us is prepared to address any questions or concerns you may have while you take these surveys. We can provide resources to help you if you feel distressed. And we can help you finish the survey or come back to it at a later time if you need to take a break from the questions. Just as our staff are trained to take your measurements or draw blood, they are also trained to help you as you take these surveys. You can contact the Support Center at (844) 842-2855 if you need any of these services.
A Powerful Tool for You — and Researchers
“Genetics, biology, environment, and clinical history all interact to give each of us a different experience with mental health. We just have to figure out how to provide treatment in a better way,” says Dr. Ahmedani.
These surveys give researchers the chance to move in that direction. Like all health research, researchers can study responses from these surveys combined with DNA data and other All of Us survey responses about your experiences and lifestyle. They can use all of this information to find out more about mental health.
We’re excited to give researchers a powerful tool to learn more about mental health. And we hope we can provide you with resources you may not have had before, if you need them.
And if you don’t need them, that’s okay too. You can still take these surveys and learn about mental health with us. You also might be able to help someone you know. According to Dr. Ahmedani, it’s easier than you may think:
“Listen. Be empathetic. Offer support.”
Want to see more about research on mental health? You can visit our Research Projects Directory. To learn more about mental health, you can visit MentalHealth.gov. And if you or someone you know is in crisis, you can contact the 988 Suicide & Crisis Lifeline 24 hours a day, 7 days a week.
More than 675,000 participants who have completed the consent process.
More than 463,000 participants fully enrolled.*
More than 5,700 research projects are using All of Us data.
*Fully enrolled participants are those who have shared their health information with All of Us, including giving blood and urine or saliva samples.
Researchers across the United States have been exploring All of Us data for 3 years. We are now ready to make this resource even more widely used by researchers. This will help fuel new insights into health and well-being. It will also advance health equity and boost the impact of what you share.
Starting in August, international academic, non-profit, and health care organizations can apply to use All of Us data. One of the core values that is built into our consent is to make All of Us data broadly available. This will speed up research that can help people worldwide.
Data Privacy and Security Remain Our Top Focus
The program asked for input from participant communities, subject matter experts, and others as we made plans to invite more researchers to use All of Us data. We continue to seek community input as we shape the future of the Researcher Workbench.*
Our plans start with a focus on data privacy and security. Since the program began, we have worked hard to keep people's information safe. We continuously test and monitor our systems to make sure they work well. We have strong policies and rules. They help us ensure that researchers are using All of Us data responsibly.
All institutions and researchers must take several steps before using All of Us data.
Our Resource Access Board is a team of experts and participants who make sure researchers follow the rules for using All of Us data. Since all participant data remains on the secure All of Us platform, this team can review any project if someone asks them to. They also randomly select workspaces to review. If the board finds violations, a few things could happen. The researchers could face penalties, like losing access to the data. The program could also take legal actions against them.
Teams From Around the World
Already, more than 6,000 researchers around the country have signed up to use All of Us data. They have used the data to understand why some people get sick and others stay healthy. They have studied health disparities to learn why conditions affect some communities more than others. They have looked into preventing chronic disease. And they have explored the effect of the COVID-19 pandemic on mental health.
Soon, researchers from different countries will be able to work together to make even more discoveries. They might find ways to improve people's lives. For example, international teams in the past identified different types of cancers. Other such research has led to new treatments like insulin for diabetes and statins for high cholesterol. These teams have developed better ways to prevent disease. They have produced drugs and therapies to treat them.
We look forward to helping more researchers from different backgrounds work together. We invite them to tackle our toughest health problems. Sharing All of Us data with researchers around the world could help advance precision medicine for all.
*Data from those who identify as American Indian and Alaska Native (AI/AN) is not in the Researcher Workbench. All of Us is meeting with Tribal leaders again this fall at a formal consultation to get input on program activities. That meeting will guide how researchers may be able to access AI/AN data in the future. Learn more about our work with Tribal Nations.
“Don’t just survive, thrive. Find your path of purpose.”
Ray Charles Lay has his own version of the blues.
He shares a name with the famous singer. But All of Us Participant Ambassador Ray Lay tunes into his own soul, openly sharing lessons from a life marred by trauma. He was incarcerated at age 14, then served in the military, then found himself homeless. The honorably discharged and disabled U.S. Marine walked a long road to recovery. Now he focuses on helping others with mental health issues. He works toward a future where mental illness is better understood.
Ray’s mantra sustains his daily rhythm: “Instead of being bitter, let’s strive to get better.”
Serving as an All of Us Participant Ambassador and an advisor to several other national groups has given him a strong sense of purpose. He shares his personal experiences to help those around him.
Born in Mississippi in 1955 and the youngest of four boys, Ray and his family moved to Indiana when he was 4 years old. His father was an African American World War II veteran. He wanted to move away from the South where Jim Crow laws enforced racial segregation. His father got a job as a mechanic in Gary, Indiana, but had to work the overnight shift.
For Ray, the struggle with mental illness started young, though he didn’t know the diagnosis until he was an adult. He traces the start of his troubles to a near-fatal car accident when he was 5 years old. His father was driving back to Mississippi with him and his mother. Ray was in the backseat when the car collided with a bus on the highway near the small town of Hayti, Missouri. The impact sent Ray hurtling through the windshield onto the highway. He lay there unconscious, surrounded by glass. Everyone survived, but Ray was in a coma for several weeks.
“I still bear the scars. My life went from bad, to worse, to violent,” Ray said.
He started acting out at school, on the playground, and at home, becoming aggressive and disoriented. His parents sent him to a psychiatrist and disciplined him. They sent him at age 8 to the Indiana Boys School for a year. This was a state-run juvenile detention center that had a history of violence, abuse, and escapes. At age 14, Ray stole a car, got his hands on a gun, and killed a 20-year-old man who he said had bullied and attacked him.
A court-appointed attorney reviewed his background. Ray was found incompetent to stand trial by reason of insanity. He was committed to Beatty Memorial Hospital. He spent two years at the state-run maximum-security mental health facility.
Soon after his release from the hospital at age 18, Ray noticed a U.S. Marine handing out information. Ray asked if he could join. Within months, Ray was stationed in San Diego, California, then sent to the Philippines, South Korea, and Japan. Through his military service, he was able to complete his high school diploma and begin college preparatory classes.
In 1978, less than two years in, Ray’s service abruptly ended after a psychotic episode in Japan. He returned to Gary, Indiana, feeling devastated and defeated. He became homeless while misusing drugs and alcohol.
Finally, in 2003, at age 48, Ray took the advice of family and friends and visited a VA hospital. It was there that Ray first learned about his diagnosis. A social worker asked if he was being treated for schizophrenia.
“What’s that?” Ray said.
Road to Recovery
Ray read through his military files and hospital history. This allowed him to learn about his mental health history, accept his diagnosis, and change his behavior. He became sober and stopped using illegal drugs.
“I have six bullet wounds, three stab wounds, yet I am still alive,” Ray said. “I am a man of hope. I believe my iota of hope needs to spread to others so that they can see recovery is possible. It is real and worth pursuing.”
Now, at age 68, Ray owns his own home and business in Indianapolis. He aims to “pay it forward” and help his community. He trains correctional officers, police officers, and first responders. He openly details his experiences and offers de-escalation techniques. Ray is a Department of Veterans Affairs Peer Support Specialist. He is a Certified Recovery Specialist. And he is a member of the National Alliance on Mental Illness Board of Directors.
He actively cultivates his own personal drum beat of support. And he happily repeats to others on the journey: “Don’t just survive, thrive. Find your path of purpose.”
Ray believes his participation in All of Us will help advance mental health discoveries.
All of Us Participant Ambassador
Forty-eight participant advisors help support the program’s goals. They offer feedback on strategies and governance by serving on committees, boards, and task forces. In his role as a Participant Ambassador, Ray was a strong advocate for the program’s planned training of staff who would be helping participants complete two new All of Us surveys on mental health and well-being. As a result, the program offered several trainings on managing participant interactions, handling stress and providing a list of mental health resources.
“Ray spoke so powerfully about his own experience,” said Jordan W. Smoller, M.D., Associate Chief of Research in the Department of Psychiatry at Massachusetts General Hospital. He co-led the All of Us task force developing the surveys. “There’s a certain authority that comes from having his experiences. His insights help destigmatize and demystify what mental illness is.”
Ray's namesake might have turned blues into soul, but Ray Charles Lay is turning his blues into helping other souls.
“I am committed to helping people stop listening to their negative internal voices,” Ray said. “I’m also a stigma buster, advocating for an end to judging people.”
Read more about Ray in the full Voices of All of Us profile.
All of Us Continues Sharing DNA Results
We are excited to announce that we have invited more than 110,000 participants to decide if they want to receive health-related DNA results. Each week, we invite another 5,000 participants.
We are inviting participants based on when they shared a sample with the program. We’ll send you an email or SMS when it’s your turn to decide whether to get your results. For more information on becoming eligible to receive DNA results, view our Genomics page.
The All of Us Journey Exhibits
All of Us is on the road! The All of Us Journey buses help visitors from different communities learn about precision medicine research. Visitors can see the power of participation in health research firsthand. You can even sign up to be an All of Us participant if you choose to. You can find one in the following cities: