March 2022

More than 475,000 participants who have completed the consent process.

475,000

More than 326,000 participants fully enrolled.*

326,000

More than 1,180 registered projects for the Workbench.

1,180

*Fully enrolled participants are those who have shared their health information with All of Us, including giving blood and urine or saliva samples.

When the pandemic began, All of Us paused all in-person enrollment and other live events. We are just starting to open up again in places where it is safe. If your area hasn’t started in-person enrollment yet, you can still sign up and participate online at JoinAllofUs.org.

In 2020, the beginning of the COVID-19 pandemic brought with it many questions. How can we stay safe? How can we protect others? How can we stay connected from a distance? Virtual events helped answer some of those questions. But a shift to virtual events raised other questions: How can we make a virtual event work for people who are deaf or hard of hearing? How can we make it work for people who are blind or have low vision? 

Fortunately, All of Us had a partner who could help. The American Association on Health and Disability (AAHD) has been an All of Us partner since 2018. Early on, AAHD helped All of Us make sure in-person events were welcoming and accessible for people with all types of disabilities. As we start to hold more in-person events again, we’re using what we learned then—and since. And when the pandemic started, AAHD helped us make virtual events just as welcoming. 

“It’s been a learning curve for a lot of people,” says Karl Cooper. As AAHD’s Director of Public Health Programs, Karl leads the organization’s outreach and engagement work with All of Us. “For us, it was about learning what was already built into virtual platforms and what you could do to go above and beyond what the platform could do,” he says. 

For example, captions help people who are deaf or hard of hearing take part in virtual events. Virtual platforms can provide automatic captions. These captions are “fairly accurate,” Karl says. But including a professional captioner in a virtual event is even better. In addition, AAHD learned how to make sure that people who are using screen readers get the most out of a virtual event. Screen readers are software that read the words on a screen out loud. Many people who are blind or have low vision use screen readers. Screen readers can’t read the slides that presenters share in a virtual event. But they can read the chat. So putting any key questions or information in the chat helps people who are using screen readers to participate fully.  AAHD also encourages presenters to explain important graphics or statistics that are on their slides. Doing this out loud allows those who are blind or have low vision to fully appreciate what is being presented.

AAHD doesn't work only with All of Us on events. It works with other groups to make sure that people with disabilities learn about the program. And it has helped All of Us create welcoming, accessible, and inclusive materials, such as flyers and handouts. 

Making sure people with disabilities can access, use, and relate to the materials is critical. “Disability is cross-cultural,” says Karl. People with disabilities come from different racial and ethnic groups. They may belong to sexual and gender minority groups. And there are different types of disabilities. Including a variety of people in the images we use helps us let people know that they are welcome in the program. 

Working toward better health for all of us 

All of Us aims to enable research that can help improve health for everyone. To do that, we need to include all kinds of people. In fact, one of our core values is that participation in All of Us is open to everyone. Another is that All of Us participants should reflect the rich diversity of the United States. 

We especially need to include groups that have been left out of research in the past. People with disabilities are one of those groups. “So often, the only time people with disabilities are sought out to be involved in a research study is when it’s about their disability,” Karl says. “And that doesn’t help them with general health.” 

AAHD’s mission is to ensure health equity for people with disabilities through policy, research, education, and dissemination. AAHD works with people with all types of disabilities. That includes people with intellectual or developmental disabilities. It includes people with mental health disabilities. It includes people with disabilities that affect movement. And it includes people with disabilities that affect the senses, such as vision or hearing. Helping to make sure people with disabilities can take part in All of Us supports AAHD’s mission as well as ours. 

Karl believes that All of Us can help lead to advances that could benefit everyone. But that’s not guaranteed—which is one reason including people with disabilities is crucial, he says. “That’s only going to happen if everyone is involved.” 

Learn more about AAHD and its work with All of Us. 

The last two years have been full of quarantines, masks, and COVID-19 testing. But do you remember our requests to fill out the COVID-19 Participant Experience (COPE) survey? All of Us released this participant survey six times between May 2020 and February 2021. The goal was to learn how the pandemic was affecting people’s health, well-being, and daily life. Nearly 100,000 participants took the survey.

Now we’re sharing what we learned, thanks to your willingness to tell us about your experiences. Participants can log in to their portals and see insights about the surveys. Don’t forget, you need to access the Participant Portal to see these insights. It’s a special thank-you to All of Us participants! If you’re interested in joining All of Us to be included in future surveys, you can sign up here.

Clicking through the insights, participants can see trends in where survey-takers lived and how old they were. The findings show how many people had someone to connect with, how many had to juggle work and caring for other people, and how many got vaccinated.

These insights offer many other ways that participants experienced the pandemic, like those listed below. Different numbers of people answered each question, so we’re listing that number too. Some participants took the survey more than once, so the total number of responses can be greater than the total number of participants:

• 9% of 129,911 responses reported feeling nervous.
• 40% of 85,899 people worked remotely.
• 6% of 9,617 people with COVID-19 symptoms reported feeling fatigue.

The pandemic is not over yet. But the virus that causes COVID-19 is becoming something we are learning to live with. The insights cover six areas related to COVID-19 and the pandemic:

• Behavior: Did people stay home or go out?
• Mental Health: How did people feel?
• Social Impact: How did the pandemic affect daily lives?
• Testing: How many people were tested?
• Symptoms: What symptoms did people get?
• Vaccine Perception: How many people got vaccinated or planned to?

Participants who want to see how their own answers compared to everyone else’s can see their individual results on their dashboard under My Data.

Although the insights are a special thank-you to the participants, other people might be curious about the information that All of Us collected in the COPE survey. For participants and anyone else interested in learning more, there are other ways to explore COPE data. The All of Us Data Browser features the COVID-19 Participant Experience (COPE) page, a one-stop shop for COPE data.

You can explore the COPE data in the Research Hub by moving your cursor over the graphs (or clicking on them). For example, one question asks, “Have you EVER been near someone that you know, or suspect, had COVID-19?” Most people—84%—said no in the earliest survey. But in the last survey, that number had dropped to 67%.

Remember, All of Us removes data that can reveal who you are. That way, researchers can’t identify you. If you have more questions about your data and how we protect it, read our privacy safeguards.

Sharing your experiences helped researchers learn how COVID-19 affected our individual health. What we’ve learned here might make a difference for the next public health event too. Thank you for being a part of All of Us.

Log in to your participant portal today! 

Controlled Tier Release

Last week, All of Us hit a new milestone. We released our first set of DNA information from participants into the All of Us Researcher Workbench. The data includes nearly 100,000 whole genome sequences (WGSs). A WGS includes information about almost all of a person’s DNA. This data can be linked to other information participants share through surveys, physical measurements, electronic heath records, and wearables. Researchers can use this data to connect the dots among various factors that affect health. This has not been easy to do in the past. Thanks to involvement from participants all around the country, we are building one of the most diverse datasets in the world. Read more from All of Us CEO Josh Denny on what this milestone means for the program and for participants. 

All of Us Science Day Fireside Chat

Join All of Us on Friday, April 1, at 1:10 p.m. ET for a fireside chat about why participation in research matters! Hear from a panel featuring participant partner Karla Rush; researcher Sally Baxter, M.D., M.Sc., assistant professor at University of California, San Diego; and researcher Olveen Carrasquillo, M.D., M.P.H., associate dean for clinical and translational research at the University of Miami Miller School of Medicine. They will discuss the importance of diversity in a program like All of Us and how they are working toward the common goal of driving medical research forward. Watch live on the All of Us Research Program’s Facebook page: www.facebook.com/allofusresearch.

Voices of All of Us: Lin and Kean Engie

Long-time volunteers Lin and Kean Engie joined the All of Us Research Program last year. For more than 50 years, they’ve volunteered on hotlines, for blood donations, to clean up litter (on water and on land), and more. Learn how they joined All of Us and why they believe big data will bring better health care to all.

Voices of All of Us: Keisha Bellamy

U.S. Army veteran and registered nurse Keisha Bellamy joined the All of Us Research Program to help improve and expand health information. She has lost several relatives, including her father, to untreated health conditions. As a participant ambassador, she finds herself talking about health research whether she’s in a yoga class, at the supermarket, or giving a virtual Town Hall. Read more about Keisha’s story and why she continues to partner with All of Us.

The All of Us Journey Exhibit

All of Us hit the road earlier in March. The All of Us Journey bus stopped at White Oak Community Center in Silver Spring, Maryland, and the Manassas Baptist Church in Manassas, Virginia, to help visitors from various communities learn about precision medicine research. Visitors saw the power of participation in health research firsthand. Check out some photos of the event here! And find out whether the All of Us Journey is coming to a city near you.