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Happy New Year from All of Us! The new year is a time to reflect on past achievements and look forward to what’s in store. This year, the All of Us Research Program will celebrate its five-year anniversary in May 2023. There will be lots of things to look forward to as we celebrate. We’ll keep returning DNA results to participants. We’ll continue to share new research. We’ll also share program updates each week. Turn on notifications for All of Us’ social media accounts (Twitter, Instagram, and Facebook) to follow the series #Reasons4Research. The series will highlight the program’s achievements and work toward our goal of recruiting at least a million All of Us participants.
All of Us researchers are another important part of the program. They turn the data from information you share with the program into health discoveries. More than 3,930 researchers are part of All of Us right now. These researchers come from many different communities, backgrounds, and institutions. Who are all these researchers? What types of research are they doing? Learn more about them below.
The researchers who use All of Us data come from almost 500 different universities, health care organizations, and nonprofits around the country. No matter where these researchers are from, they need to go through several steps to use data available in the All of Us Researcher Workbench. The program first sets up data use agreements with the researcher’s organization. All of Us trains researchers to conduct their research in a way that makes sure that the information you share is treated responsibly and respectfully.
All of Us also makes the data itself secure. Personal information—like your name—is never part of the data shared. All of Us also stores your information in a protected central database. Researchers are not allowed to download your data to their own personal computer. Researchers also have to agree that they will not try to find out who you are before they can access the data. Many other measures are in place to make sure your data is safe and can’t be misused.
Different Researchers, Different Discoveries
Different researchers can use the data you share to make different types of discoveries. Some researchers are biologists who study the body, diseases, and treatment. These researchers can use information about the blood or saliva samples that are shared with the program to study cells or systems in the body.
Blood and saliva samples contain DNA. Researchers who study DNA are called geneticists. Geneticists using All of Us data can use information from samples to learn how DNA is related to disease. They may find differences in DNA that can make someone more or less likely to have a certain disease. The Researcher Workbench currently includes data from 372,000 participants. This rich dataset now has more than 593 million unique genetic variants.
Researchers can also study health trends across large groups of people. Epidemiologists try to find the source and cause of disease. For example, epidemiologists can use participant information from All of Us surveys or electronic health records (EHRs) to understand who gets a disease and why.
Other researchers can also try to understand how behavior and social factors affect health. Some of these researchers are known as public health researchers. They study why certain groups of people have poorer quality health care or less access to care. They can then use this information to study how quality and access to care affect disease treatment across groups of people.
Your Data Makes All of Us Possible
Your data is not something we take for granted. There would be no All of Us without you. As the program keeps growing, we will keep using your data responsibly and share what we learn along the way.
Thank you for joining All of Us. We look forward to another year of discoveries, thanks to your partnership and trust.
More than 578,000 participants who have completed the consent process.
More than 403,000 participants fully enrolled.*
More than 3,330 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.
All of Us participants can share lots of data types with the program. You can donate biosamples, answer surveys, and share electronic health records (EHRs). You can even pair your Fitbit to share fitness activity levels.
Registered researchers from all over the United States can then use all of these different types of health data to answer questions. With such wide-ranging information, they can get a better picture of all the factors that impact our health. They can look for patterns and relationships across these factors that have not been easy to study before.
The Power of the All of Us Dataset
Thanks to participants choosing to share more types of health data with the program, researchers are already making new health discoveries. Here are some examples of participant data in action:
By sharing information with the program, you might learn new things about your own health. But these examples show us the power of combining data to help researchers understand the health of many others. This year, and far into the future, we look forward to more exciting research—all made possible by you.
Keep up with the latest research by reading All of Us research highlights. These highlights showcase recent research powered by All of Us data and tools.
February is Black History Month. Black History Month pays tribute to the many Black people who have lived, died, struggled, and triumphed in this country. Next month and throughout the year, All of Us honors the future that they made possible for all of us. One way to build a better future is by promoting meaningful research that can improve the health of everyone. This means engaging diverse communities in research. With help from our partners such as the Black Greek Letter Consortium (BGLC), All of Us is working to do just that.
BGLC is part of the National Pan-Hellenic Council. The council is a group of the nine national, historically Black fraternities and sororities also known as the “Divine 9.” BGLC educates people about All of Us and encourages them to join the program.
BGLC Program Lead Jennifer “JJ” Jones, Ph.D., and Antonio Martez, program coordinator for Kappa Alpha Psi Fraternity, Inc., talk about All of Us during Black history events to help Black communities overcome their mistrust of research. This mistrust stems from past abuses from researchers and institutions.
“I think what the program is trying to do makes a lot of sense,” said Dr. Jones. “We need to be a part of the solution. And fear can keep us away from being that part. My greatest fear is that there’s not a medical solution for my family when they need it because we’re not a part of the research now.”
Dr. Jones and Mr. Martez found a generational divide while talking to community members. Older folks who remember past research abuses such as the USPHS Syphilis Study at Tuskegee are cautious. They may refuse to take part at first. But younger students are far more accepting of the All of Us message. That is, taking part in All of Us can speed up health research for groups who have been left out of research in the past. All of Us wants to diversify health research by bringing in at least a million people from all walks of life. That makes each volunteer one in a million, said Dr. Jones.
BGLC hosts a number of events to reach Black communities. In one outreach effort, they visited historically Black colleges and universities to promote All of Us. “We talked about research, but even more, we talked about being true champions of your own health,” said Dr. Jones. “It was amazing to see the students. They were very receptive to the information and wanted to know how they could get involved, what they can do.”
In another effort, BGLC asked their fraternity and sorority chapters to hold watch parties for All of Us webinars. The chapters hosted watch parties at Mississippi State University, Georgia Tech, and Florida Atlantic University, among others.
“Mississippi State had more than 100 attendees at their event,” said Mr. Martez. “In addition to hosting that watch party, the individual chapters were educated on the program. So they were able to better educate those in attendance.”
BGLC sororities and fraternities include a focus on health, health equity, and social action. They have a strong community service aspect. They work with communities in which they and their members live. BGLC includes 1.7 million members around the world.
In Atlanta, Georgia, BGLC worked with the American Red Cross. The Red Cross hosted a blood drive at a church for people with sickle cell disease. Sickle cell is an inherited condition that mostly affects Black people. BGLC invited its members to donate blood and to learn about the benefits of All of Us for diseases like sickle cell. While the event went on, Mr. Martez made the rounds and explained that good medical research is not one-size-fits-all, just like eyeglasses.
Dr. Jones said BGLC has brought All of Us to small and large community events, such as the Essence Festival in New Orleans. And it is taking its All of Us advocacy on the road again soon. The Rooted in Resilience Tour kicks off in February. It will travel around Georgia, Texas, and North Carolina this year. BGLC hopes to enroll many more Black people to participate in the future of health research. If you’re in the area, stop by with a friend.
Another BGLC member, Johni Cruse Craig, Ed.D., is a partner strategist with All of Us. She brings community organizations together to increase the number of Black participants in the program. With enough diversity, research using All of Us data will be meaningful for people from all walks of life.
“My joy comes when these leaders of community organizations realize we have the same mission and heart. They get it, and we’re going to work together,” said Dr. Cruse Craig. “Because until we educate our community and get them past the distrust, we’re not going to get the numbers we need to diversify the data.”
Mr. Martez has faith that All of Us will be there in many Black History Months to come. “This program is the future of medicine,” he said. “What we’re doing right now, it’s a movement that we’re creating. We’re planting a seed today that we’ll reap the benefits from for generations.”
BGLC has been an All of Us partner since 2017 through the Community and Provider Gateway Initiative (CPGI). CPGI is a network of community and provider organizations led by Pyxis Partners, a community engagement awardee.
Brendan Lee, M.D., Ph.D., is known by patients and colleagues as the Great Explainer, translating the ABCs of DNA. Getting people to relate to genetics is his way of encouraging them into gaining an interest in their own health.
When greeting a new patient for the first time, Dr. Lee breaks out a metaphor he has shared for 30 years. He compares DNA to an encyclopedia. He tells them his role as a medical geneticist is to read the 20,000 chapters of their genetic almanac.
Every person has the same number of chapters in their almanac, but there are variations in each book. Changes in the wording of chapters are like changes in the patterns of genes. The patterns offer clues to possible illness or disease risk.
Dr. Lee and his colleagues lead the All of Us Evenings with Genetics Research Program at Baylor College of Medicine in Houston, Texas. At Baylor, he is chair of the Department of Molecular and Human Genetics. The evenings are a series of seminars and research projects that promote the field of genetics.
Dr. Lee is eager for patients and the public to appreciate the power and promise of genomic medicine. “I see genetics as a way to engage broader communities,” said Dr. Lee. “We are more similar than we are different. It is important to keep that in mind. Our genetic differences impact disease risk and are greatly influenced by our environment.”
Information Is Power
Dr. Lee admires how the All of Us Research Program shares results with participants who provide their biological and medical data. In December 2022, All of Us began sending health-related genetic results to participants based on samples they provided. The reports include possible risks for certain health conditions and how their body might process some drugs.
Participants can use the information to make decisions about their health, diet, and well-being, he said.
“This knowledge is power,” Dr. Lee said. “Perhaps providing this information will begin to change how we think about our health.”
Path to Science and Medicine: From ABCs to DNA
Dr. Lee’s path to translating the ABCs of DNA began with learning the ABCs in a different language as a child. While he calls his childhood a “typical immigrant experience,” it was a challenging time for him. He was 5 years old when he came with his parents to New York City from Hong Kong, speaking only Chinese. He learned English in kindergarten and skipped ahead in elementary school. He attended Stuyvesant High School, a public, college-preparatory school in New York, specializing in math, science, and technology.
“I was a nerdy kid and loved to read,” he said. As a young teen, he read “The Double Helix,” about the discovery of the structure of DNA. “That was the first time I had heard of DNA,” Dr. Lee said. He was hooked.
Stuyvesant nurtured his interest in math and science. He was the first member of his family to go to college. He won a scholarship to City University of New York, Brooklyn College and majored in chemistry. While there, he volunteered at a hospital and felt drawn to medicine. He realized he wanted to be both a research scientist and a medical doctor. In the late 1980s, being a physician-scientist was not common.
“I wanted to help improve patients’ lives directly, but also combine research and medicine to advance medical discoveries," Dr. Lee said.
Read more about Dr. Lee in the latest Voices of All of Us profile.
Returning Health-Related DNA Results to Participants Has Started
All of Us started returning personalized health-related DNA results to participants at the end of 2022. We’re excited to keep returning more results this year. So far, we have invited almost 13,000 participants to tell us if they want their health-related DNA results. These participants have chosen if they want to get information about their hereditary disease risk or how their bodies respond to certain medicines.
We offer results to participants based on when they shared a sample with the program. Participants who gave their sample first receive their invitation first. Keep an eye on your email or text messages for your invitation. And check back in during our March issue to view our progress.
For more information on becoming eligible to receive DNA results, view our Genomics page.
All of Us Launches New Awareness Campaign
All of Us recently launched the 2023 campaign “From Promise to Progress: Sharing our Stories.” With the goal of supporting efforts to reach our goal of at least a million participants, this year-long campaign will include stories about the program through the voices of volunteers, participants, researchers — people who make All of Us work. It starts with the series #Reasons4Research on social media. Stay tuned by following All of Us’ social media accounts (Twitter, Instagram, and Facebook).
Collaborations Continue With All of Us Local Advisory Boards
Our participants are our partners. We appreciate their expertise and care about their feedback. Participants help shape how we communicate about the program and how we do research. Many participate in local advisory boards guided by program sites. They work on protocols, testimonials, and materials.
There are more than 25 community and participant advisory boards. They meet regularly and provide advice on program matters, both national and local. Learn more.
The All of Us Journey Exhibits
All of Us is on the road! The All of Us Journey bus helps 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. In 2023, the program will have multiple Journey buses on the road. You can find one in the following cities: