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Diversity is at the core of the All of Us Research Program. But what does that look like in practice?
Five years ago, the All of Us Research Program set out to create one of the world’s most diverse health research resources. The aim was to paint a more complete picture of human health. That meant involving people from as many groups as possible. Which includes some that have been left out of research in the past.
That’s why All of Us partners with people from different races and ethnicities, age groups, and regions of the country. We also engage with people of different gender identities and sexual orientations. We look for diversity in other factors too. These include household income, education levels, and disability.
We believe that including participants from different backgrounds can lead to better treatment and better overall health. For everyone.
The Heart and Soul of All of Us
“You can have large data sets, but the same people from the same places asking the same questions in the same ways will likely give you the same future treatments,” said Martin Mendoza, Ph.D., the All of Us Research Program’s director of health equity. “You’ve got to include researchers with diverse backgrounds. That means different demographics, training, scientific disciplines, and expertise. That’s what's going to lead to new and innovative ideas. That is what will push science and medicine forward.”
In fact, many perspectives are important to health science. Which is why researchers with fresh points of view are so valuable.
Dr. Mendoza said the program invests in outreach and engagement to find those researchers. Then it works to ensure they have the access, support, and tools they need.
“Some groups — such as racial and ethnic minorities, sexual and gender minorities, and individuals with disabilities — are underrepresented in the biomedical workforce,” he said. “We want to support researchers from all backgrounds and lived experiences. This will ensure that moving forward, science is an inclusive, diverse space. One of the ways we do this is by partnering with organizations that have a track record of training scientists from underrepresented groups.”
All of Us invites researchers at all stages of their careers to build the program's diversity.
“We want students, early-career researchers, and senior-level scientists.” said Dr. Mendoza.
An early-career researcher and a more seasoned one may approach problems differently. Someone recently out of school might bring different energy, intelligence, and perspective to a research project. A veteran researcher, on the other hand, has years of direct experience to draw on. That can help them analyze data while also mentoring less experienced colleagues.
Data Usage
Making sure All of Us data are broadly accessible is also key. Registered researchers can access data on the Researcher Workbench. That’s the secure, cloud-based platform where participants’ health data — collected via surveys, electronic health records, wearable devices, and samples — are stored. Researchers can also use tools and resources that the program built to support their studies and projects. That includes 14 tuition-free courses on how to conduct research using All of Us data.
The program’s commitment to diversity is already showing signs of success. As the All of Us researcher community has grown, so has the percentage from underrepresented groups. In fact, more than 70% of scientists now registered to use the data are from these groups.
Variety is the spice of life. It's also what's going to help the All of Us Research Program improve the future of health.
More than 730,000 participants who have completed the consent process.
More than 502,000 participants fully enrolled.*
More than 8,000 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.
At All of Us, we work nationwide and in communities to make sure everyone is welcome. We are carving new pathways in how we engage with Tribal Nations in health research.
All of Us has awarded new funding to partners in Arizona and Wisconsin as part of our collaboration. All of Us also awarded funds to a national Indigenous-serving organization. These three groups work with AI/AN communities.
The funding will support All of Us efforts to involve Tribal communities in the program. And All of Us will support Tribes in several ways.
Students will have access to research fellowships and workshops. All of Us will help with plans to involve people from specific Tribes and areas. Resources will go to research positions with organizations that serve Tribes. And All of Us will support education and research training.
“We will work together to build a foundation of trust,” said Karriem Watson, D.H.Sc., M.S., M.P.H., All of Us chief engagement officer. "And we will work with Tribal communities on our shared goals of delivering a healthier future."
A University of Arizona team will develop long-term plans to involve Tribes in All of Us. They will work with a committee of Tribal and urban leaders, healers, and health care leaders to do so.
This funding will look into how much interest Tribes in and around Arizona have in taking part in the program. It will also gauge how ready the Tribes are to participate. The work will explore how regional Tribes and All of Us might work together. The team will help interested Tribes define and start their own research projects.
The award in Wisconsin went to a team that includes three organizations. The Marshfield Clinic Research Institute, the University of Wisconsin-Madison, and the Medical College of Wisconsin will take part. This team will help Tribes expand engagement activities. They will also work to increase interest in health research.
The team will reach out to Tribes in Wisconsin. And they will contact AI/AN people living away from reservations in the Milwaukee area. Part of the plan is to find ways for AI/AN students to work with researchers. They will also work to increase awareness of precision medicine. This approach uses a person’s genes, surroundings, and lifestyle data to find treatments that work best for them.
Funding also went to the American Indian Science and Engineering Society (AISES). AISES is a national nonprofit that helps bring Indigenous people into science, math, and engineering. AISES will design an outreach campaign to promote health research with Indigenous students. The campaign will also help AI/AN students, teachers, and researchers develop their research careers.
“We want All of Us to benefit Tribal and Indigenous people and their communities,” said Michael Hahn, All of Us Tribal engagement and outreach branch chief. “We want the views of Indigenous people to help guide our program plans. This funding will grow research about Indigenous health by those with Indigenous knowledge."
You’re cooking dinner one night and observe that you’ve run out of an ingredient. Can you use something else instead? You do some quick research on Google and hypothesize that something else in your pantry could be a good substitute for what you’re missing. You decide to experiment with tonight’s dinner and see if your swap works. A taste test concludes that dinner has been saved! You share this victory with your friends and family as you enjoy your meal.
Congratulations — you’ve just used the scientific method!
A Quick Science Lesson
The example above is simple. But it really does demonstrate the scientific method. It’s the same logical process that’s guided science from ancient times to now. And it’s key to how researchers use data from the All of Us Research Program.
You may have learned about the scientific method in school. As shown above, it involves six steps: 1) Observe, 2) Research, 3) Hypothesize, 4) Experiment, 5) Conclude, and 6) Share Results.
An observation can use any of your five senses — sight, hearing, taste, smell, or touch — to show you something about the world. That observation can then lead to questions. For example: How does something work? Why does it work that way? And what change could make it better?
The questions then need to be researched. Research can give you important clues for how to answer them.
Research also helps you develop a hypothesis. A hypothesis is a prediction of the answers to your questions, based on your research. Research makes a hypothesis much more than a guess. In the cooking example above, it’s the difference between, “I think I can add this ingredient” and “I think I can add this ingredient, based on the cookbooks that say this ingredient will give good flavor to this dish.”
Next comes the exciting part: the experiment. An experiment is planned and controlled. Ideally, only one element is changed, and all the other conditions are kept the same. This makes it easier to understand your results. If you want to know whether your ingredient swap worked, you can’t change everything — the cooking temperature, the cooking method, and the other ingredients — all at the same time.
The next step is to analyze the data you’ve gathered from your experiment. You may find patterns in the data that help you draw conclusions about your hypothesis.
Then you can share what you found, whether you proved your hypothesis right or wrong.
The Real-World Scientific Method
So how does this classroom breakdown compare to science in the real world? Well, the scale is much grander in a real lab. But much of the process is the same.
Observations inspire a lot of scientific research. For example, All of Us researchers may notice that lots of people have a disease. That observation drives research on how that disease spreads and causes sickness. In the future, that research shapes experiments that develop and test new treatments for the disease.
But treating a disease is no easy feat. Before you get to that point, a series of smaller tests is needed to get closer and closer to a disease’s cure. The research, hypothesis, and experiment steps may have to be repeated many times before you come to a final conclusion.
Those repeating steps apply to everyday life, too. If your ingredient swap didn’t work the first time, you might try cooking the recipe again with different amounts of the ingredient. Or maybe some people like the swap while others don’t. You may need to try different recipes for different dinner guests to really understand how the ingredient could be used. You could say you’re taking a “precision cooking” approach!
Repeating steps of the scientific method also lets science build on itself. For example, All of Us researchers may find that treatment for a disease does not work for everyone. Or they may see that certain groups of people weren’t included in the studies that helped develop those treatments. This observation may lead researchers to ask about better treatments that actually work for everyone. And those questions spark new efforts to gather data and add to what we previously knew.
Sound familiar?
All of Us: Part of a Scientific Cycle
All of Us helps researchers using the scientific method to make discoveries. By gathering samples (blood, saliva, and urine), electronic health records, and survey responses from many different people, we help them ask questions and find answers about health and disease. And as researchers find relationships within the data, those findings could inspire other studies to explore those relationships further and further.
Researchers are using All of Us data for all kinds of studies like this. These studies range from teaching us about heart health for different groups of people to uncovering more genetic variants for the study of disease. Studies like these could speed up health research and the process of scientific discovery.
But remember: The scientific method isn’t just a series of steps to get to the “right” answer. It’s more like a never-ending cycle. And each turn of the cycle brings us to a “better” answer. All of Us is helping move that cycle along.
Also remember: Just because a new answer is “better,” the old answers aren’t pointless. Sometimes they helped us get to a more accurate answer. The beauty of the scientific method is that there’s always the potential to improve.
That applies to the health of future generations — or simply making a nice dinner.
Joyce Ann Bell Winkler, R.N., MPH, has been with the All of Us Research Program since 2016. That year All of Us selected Eau Claire Cooperative Health Centers Inc to join the program. Winkler was a researcher and manager at Cooperative Health, which is a Federally Qualified Health Center in Columbia, South Carolina.
After several years she retired and became an All of Us participant ambassador. In that role, she helped the program develop a new survey in November 2021. This survey asks about social and environmental factors. It includes questions about neighborhood safety, access to food, and other similar questions. The survey gives researchers important data to connect daily life to overall health.
There was a gap between when she retired from a 40-year career as a nurse and when she became an ambassador. That time found her caring for her mother, who died in 2020. Home was where Winkler saw first-hand the environment’s effect on health within her family. Many members of her family had developed diabetes, heart disease, and other ailments. These included her father, sister, and grandparents.
“In my small community, diabetes impacts nearly every family I know,” Winkler said.
All of Us has data from nearly 34,000 participants living with type 2 diabetes. Researchers from Florida A&M University studied electronic health records and surveys to find diabetes patients at the highest risk of disease at All of Us. They looked for heart attack, stroke, or heart failure. Winkler was not involved in the research. But sharing the findings can raise awareness about preventing disease. Sharing can encourage more people to share their health experiences.
“The more we share, the more we can encourage screenings and manage the disease,” she said.
Learning and sharing has driven much of Winkler's life. Education formed a bridge from growing up on a farm to her research. In retirement, Winkler has come full circle. She has returned to her childhood school. She shows students how their farming community can offer career opportunities in science, marketing, and business.
“I look at how blessed I have been with so many people who allowed me and encouraged me to do things and grow into the person I am,” Winkler said. “It is why All of Us is so important to me. As an ambassador, I can work with those who may not have a door open. I can help be that bridge, provide that opportunity.”
Read more about Winkler being part of her school's racial integration and driving a school bus when she was 16 in this All of Us Voices profile.
8,000 x 8,000
In November, the All of Us Research Program set two new research milestones that involve the number 8,000.
More than 8,000 researchers are now using All of Us data to learn more about health. As we discussed in our feature article, diverse researchers — and lots of them — bring unique perspectives to research that can lead to exciting discoveries.
And those researchers have been busy! They have now started more than 8,000 research projects in our Researcher Workbench. Each project is an opportunity to make a new discovery about health. Those discoveries can teach us more about what makes us sick or keeps us healthy. You can learn more about these projects in our Research Projects Directory.
Some of this research has already led to exciting discoveries. Our Research Highlights show some of those new findings. In keeping with the 8,000 theme, one showed that taking at least 8,200 steps per day lowered risk for certain health conditions.
All of Us Continues Sharing DNA Results
All of Us started sharing health-related DNA results to participants at the end of 2022. We started with participants who had shared samples the earliest.
Up to late October, we have invited more than 206,000 participants to tell us if they want their health-related DNA reports. Each week, we send out another 5,000 invitations.
Keep an eye on your email or text messages for your invite. For more information on how to receive DNA results, view our Genomics page.
All of Us Research Highlights
We know social support is good for mental health, especially during hard times. In a new study, researchers looked at specific types of social support during COVID-19. Thanks to All of Us, the researchers learned which types of social support protected against depression the most and which groups benefited the most.
Want to know more? Check out the Research Highlight. And visit our Research Highlights homepage for other studies powered by All of Us data.
What’s Next: The All of Us Journey
It’s been a busy year for All of Us on the road.
From January through October 2023, three All of Us Journey vehicles visited 20 states, 82 cities, and 136 locations. These mobile exhibits and clinics helped nearly 100,000 people learn about precision medicine. Almost 62 percent of those who climbed aboard a Journey vehicle created an All of Us account.
The All of Us Journey vehicles are taking a break this winter. That gives our traveling teams some well-deserved rest. This break helps keep them safe and avoid traveling in winter weather. It also gives All of Us time to map out next year’s routes. The All of Us Journey will resume in April 2024. New dates and locations will be posted here as soon as they’re set.
Stay tuned for more info!