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Most of us have had the experience of buying a new cellphone. Sometimes a new carrier offers more features for less money. Maybe your current phone lacks the storage needed to support new apps that help and intrigue you. Your needs evolve. Technology changes as well.
All of Us is in a similar situation. Thanks to participants and all that you have shared with us, the program continues to grow. What we need to support our growth continues to change. As a program, we have been asking ourselves some questions:
Since we launched the program in 2018, we have grown and learned a lot. We have experience we can use to think through these questions and guide our plans. We are excited about the future of All of Us. We hope you are, too.
A Big Technology Change
In the next few months, you will hear more about an important change. We are changing the program’s technology platform. This is the system that helps participants sign up, complete activities in their accounts, and receive messages from All of Us. It’s how your local partner reaches out to you and supports you on your All of Us journey.
Our technology platform is the hub for All of Us activity. Changing it means changing a lot of other parts of our program.
What You Can Expect
Let’s go back to the cellphone analogy. Imagine you switch phones. Maybe you go from Android to iPhone, or vice versa. It will probably look and feel a bit different. The way you complete certain tasks will be different. But in general, you know how the new phone works and get the hang of it quickly. There are probably some improvements and benefits that you can’t see at first that will make the experience better for you.
That’s what we hope will happen with this technology change.
Because we have so much information and so many activities, we are making this technology change in stages. Picture the challenge of downloading your photos from one phone and moving them to a new one. We securely store information shared by more than 840,000 participants. It’s a lot of data. We protect it with the same care and respect that you show your treasured images.
During the first stage in December and into early 2025, you may notice that some features you currently see won’t be there at first. For example:
These are important parts of our program. They are important for powering research, and we plan to add them back in over time.
What Will Be Better in the Future
Once finished, the new platform will enable even more exciting research. Here are just a few of the things this new system will allow us to do in the future:
Important Dates
Here are a few dates to keep in mind as we prepare to change our platform.
Change can be a challenge. This technology change is an investment in the future of All of Us. It will be complex, but over time, we promise, it will be worth it.
All of Us is all about big investments to achieve exciting goals. We’re on a mission to improve health research together. So whether you’re using a cellphone, tablet, or computer, we hope you’ll use it to stay in touch. We’ve got big plans for the future.
More than 847,000 participants who have completed the consent process.
More than 573,300 participants fully enrolled.*
More than 14,000 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.
If you’re an All of Us participant, you’ve shared some very important information. You’ve told us about yourself in surveys. Perhaps you’ve shared your electronic health records, or EHRs. Maybe you’ve even given us a DNA sample.
All that information can be combined to help researchers learn about health. But how do they access it?
Researchers get the information you share by using the Researcher Workbench. The Researcher Workbench gets new information through a data release. As the term implies, the program releases a batch of new data and shares it with researchers. The data can come from new participants. And it can also come from new surveys, or activities like Exploring the Mind.
Each new data release adds important new data for researchers. But, data releases only happen a few times a year. That’s because each data release takes a lot of work. The data has to be organized and reviewed for a few reasons. One reason is to make it easier for researchers to conduct their studies. The most important reason is to protect your privacy. We only share information with researchers once we’re confident it can’t be used to identify a participant directly.
Eventually, the results of some of that research come back to you in the form of Research Highlights or My Medical Minutes.
How do data releases happen? Let’s talk about it.
Gathering the Pieces of Your Health Story
We’ve shared that it takes a lot of work to take your sample and turn it into information about your DNA. Your sample is collected and stored at the biobank. Then information about your DNA is pulled from the sample and sent to our Data and Research Center.
This kind of work goes into all the other information our participants generously chose to share. Survey answers, EHRs, physical measurements, and Fitbit data all come from different places. These places can include your All of Us account, medical databases, the in-person site you may have visited when you first joined All of Us, and Fitbit’s database.
All of this information needs to be gathered. And then it is sent to the Data and Research Center.
Once it’s there, the information needs to be checked. All of Us makes sure that all information is complete. We make sure there were no errors in how something was collected—such as a typo in your EHRs. We also make sure everything you donated doesn’t have information that could give away your identity. We remove names, addresses, and your date of birth.
After that, the data still isn’t ready for researchers.
Curation and Harmonization
Once all of the data is together, it needs to be easy to use for research. The data needs to be curated. To understand this idea, let’s work backward.
Researchers have used All of Us data to study whether walking a certain number of steps reduces someone’s risk of type 2 diabetes. How did they do that? It would take forever if researchers had to manually look up how much every participant with Fitbit data has ever walked. And it would take even more time to look at each participant’s health records and find participants with diabetes.
This is where curating the data comes in. Instead of poring over thousands of EHRs, researchers can search for participants who have shared their EHRs and their step counts—almost like doing a Google search. Then they can split these participants into two groups: those who have diabetes and those who don’t. And then researchers can find step counts between the two groups.
But step counts and EHRs are two very different pieces of data. One is a series of numbers. The other is a series of events. One comes from a wearable device. The other can come from hundreds of different EHR systems. How do researchers reconcile these differences? How can the number of steps a person has taken over months, or years, fit into their EHRs to create a unified story of health?
The answer is harmonization. Like an orchestra harmonizes different types of instruments, All of Us harmonizes different types of data. Each piece of data from each participant is translated into a common format. That format allows any type of data to be studied in concert with another.
Curating and harmonizing data bring information right to researchers’ fingertips, in a way that is easy to study. They can spend less time organizing and piecing data together and more time finding the music within it.
Data Releases Lead to Results for Scientists—and Participants
Researchers have already made hundreds of discoveries, thanks to All of Us data fueled by participants like you. In fact, since 2018, more than 700 scientific articles have been published with All of Us data.
And we’re sharing these findings with you. Participant data releases have helped researchers learn about how DNA plays a role in kidney disease. They’ve informed proper dosing of cancer treatments. And they’re finding links between cholesterol and breast cancer.
Organizing all of this data is why data releases take so long. But these releases are how the program fulfills its promises to researchers—and to you.
As All of Us has grown, we’ve collected data from more and more people. We’ve also collected new types of data. We’ll continue to make sure each new data release works seamlessly with the releases that came before it. And we’ll do this while we stay dedicated to new research that drives science and better health.
As you may have read above, we have exciting news. A technology transition is underway that we think will improve your All of Us experience over time.
When the new system is up and running in mid-December, we’ll ask you to create a new password.
Changing your password regularly is a great way to keep your information safe.
Security experts recommend using sentences or short phrases to make your account more secure. It’s also important to avoid reusing passwords. Everyone has a lot of accounts in a lot of places these days. It can be tough to always use different passwords, but it is important.
We’re always here to help. Once the new system is live, our Support Center can help walk you through the steps to create your new password on the new system. They’re available from 9 a.m. to 7 p.m. ET Monday to Friday. Give them a call or send them a text at (844) 842-2855, or start a live chat on our website.
Miguel Flores Jr. unites worlds.
Flores continues to connect the All of Us Research Program with Tribal communities. For 30 years he’s helped governments, schools, and Tribal Nations build partnerships and awareness. His constant goal is to create a better understanding on all sides.
Flores is a substance abuse counselor, traditional healer, and community leader in Tucson, Arizona. He was raised there in his family’s Indigenous Mexican traditions. But he also belongs to the Pascua Yaqui Tribe and the Tohono O’odham Nation. Flores speaks English, Spanish, Yaqui, and O’odham.
Those languages and traditions inspire Flores and his work. Flores became involved with All of Us in 2018. He advised the University of Arizona at Tucson then on how to respectfully reach out to Indigenous communities. His experiences and indigenous background led to his role on several All of Us governing boards.
“Flores’ work has let All of Us create a more inclusive program to better meet the needs of Tribal Nations,” said Michael Hahn. Hahn is the All of Us Tribal Engagement and Outreach Branch chief. “We are committed to working with Indigenous communities to advance medical research that can benefit all of us.”
In September 2023, All of Us awarded $1.5 million to the University of Arizona (and other institutions). The funds will help Tribal Nations advance health equity and precision medicine. Now the university is developing a tool to measure when the community is ready to participate in the program. Flores said respecting Tribal sovereignty is the key to boosting readiness.
“If we are open and honest, All of Us can bring a lot of benefits to Tribal communities,” Flores said. But it “takes time. We need to build long-standing relationships.”
Flores recently joined a governing group that helps the program focus on outreach to communities historically underrepresented in biomedical research (UBR). All of Us will soon begin incorporating health data on its research platform from participants who self-identify as American Indian and Alaska Native (AI/AN). These deidentified data will be available to registered researchers, with protections in place to safeguard privacy and support responsible use.
“I think this is good progress,” Flores said. “It will help advance research on health and disease among Indigenous populations.”
Going forward, Flores plans to stay involved in the program. He wants to promote continued oversight and checks and balances, to make sure that future research is respectful and never stigmatizing.
Generations of Caring
Flores knows about the importance of relationships. He’s a fourth-generation Tribal member. His maternal great-grandmother fled Mexico on foot. She left when the government began deporting Indigenous members from their village. In Arizona she was a Pascua Yaqui Tribal midwife from the 1920s to the ’70s. She passed away in 1992, at the age of 104. When she died, Tucson’s Kino Community Hospital named its labor and delivery room after her.
Her legacy lives on in her great-grandson. Flores was inspired by her resilience and community commitment.
Flores was the first in his family to finish high school and go to college. On campus, he joined a program called Y.E.S. (Youth Enrichment Services). It offered after-school tutoring to children in kindergarten through sixth grade. That’s where Flores’ passion for counseling began.
“I had a good rapport with the kids,” Flores said. “It really changed my life course.”
Y.E.S. trained him to merge art and cultural traditions. He also learned ways to prevent violence. Later, Flores pursued mentoring jobs with the Tohono O’odham Nation. He got a state license to be an independent substance abuse counselor. He was also certified as a treatment specialist for sex offenders. Then he opened his own counseling business.
Patricia S. Nye, M.D., is a retired captain in the U.S. Public Health Service. For 18 years she directed behavioral health at the Tucson Area Indian Health Service office. Flores worked under her there. She said he’s a great counselor because he learns from his own experiences. His “profound understanding and respect for his own background” make him who he is.
“He has known from childhood that he possesses a gift and the responsibility to use his gift for healing and wholeness,” Nye once wrote of him.
A Healer and Leader
Flores educates his communities about health and health care. He tells them why medical research is important. And he explains why new research needs to include them. Then he helps All of Us Research Program leaders talk with Tribal communities in ways that respect their cultures and customs.
“Generational trauma from research has had a negative impact on our communities,” Flores said. “Many broken promises, broken treaties.”
But Flores said the ongoing talks are starting to pay off. Government and Tribal leaders are gaining a better understanding of the other’s perspectives.
“Sometimes,” Flores said, “we have two different philosophies of how things get understood—two different timeframes.”
Often, his role is in developing a bond between the two groups, helping to build a shared understanding and a path forward. A clear example of this divide is with DNA samples. “Participants do get valuable information back,” Flores said. “A lot of researchers just see DNA as a sample. As Indigenous people, we see it as a gift. We’re giving you part of our life.”
Now 30 years into his career, Flores remains committed to teaching Native customs.
“I have always been proud of who I am and where I am from,” he said. “It’s my job to help people understand the significance, the meaning.”
To learn more about All of Us activities with Indigenous and Tribal communities, visit https://allofus.nih.gov/about/diversity-and-inclusion/tribal-engagement.
Download Your Research DNA Results
Have you received a research DNA result from All of Us? Friday, November 22, is the last day for participants to view research DNA results in their All of Us accounts before we make technology updates. Please take a moment to read about the changes we are making to research DNA results at http://joinallofus.org/DownloadResearchDNAResults
Save or download your research DNA results now by logging in to your All of Us account. As a reminder, research DNA results from All of Us include the Hereditary Disease Risk Report and Medicine and Your DNA Report. We also return DNA results about genetic ancestry and traits.
Tune into CBS Sunday Morning on 11/24 for All of Us and Nutrition for Precision Health
CBS Sunday Morning will highlight the All of Us Research Program and one of our partnered research studies, Nutrition for Precision Health at 9 a.m. ET. This study is the largest of its kind. It aims to enroll more than 8,000 participants from diverse backgrounds to learn more about how our bodies respond differently to food. Poor diet is one of the leading causes of preventable disease and death around the world. The CBS segment will follow an All of Us participant through the study process.
New Research Highlights Available
This month’s highlight is about using artificial intelligence (AI) to find new uses for medicines. Researchers used the AI program ChatGPT to comb through large amounts of scientific information. They asked it to suggest medicines that might have potential to treat Alzheimer’s disease. They only wanted medicines that already exist, because that’s a relatively fast way to get a new treatment. The AI found a list of 10 medicines. Next the researchers studied data from All of Us and another big dataset to see if people who took those medicines had a lower risk of developing Alzheimer’s. Three of the 10 looked promising. The next step would be to test those three medicines in clinical trials.
The October Research Highlight was on cholesterol and breast cancer. It’s clear that high levels of cholesterol increase the risk of heart attack or stroke. But it’s less clear what’s up with some other diseases, such as breast cancer. Researchers looked at All of Us data to better understand the link. High levels of “bad” cholesterol were related to a higher risk of breast cancer. So were high levels of total cholesterol. For “good” cholesterol, the effect on breast cancer risk depended on age.
The All of Us Journey Exhibits
The All of Us Journey vehicles are taking a break for the end of the year. They’ll be back on the road in 2025. Keep an eye on our website to see when we’re coming to a community near you.