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These are challenging times for many of us. But the Black community and all communities of color have faced particular hardships in the past few months. Recent events have brought national attention to ongoing social injustices, and the COVID-19 pandemic has shed light on existing health disparities.
Statistics show that COVID-19 is affecting minority communities at higher rates. In 32 states plus Washington, D.C., Blacks are dying at rates higher than their proportion of the population. Rates of infection for Latinos and Hispanics are two times higher than expected in 30 states.
COVID-19 isn’t the only place where health disparities like these show up. We also see them in health overall for a number of reasons. A big factor that impacts your health is whether you can easily access good health care. For many people in communities of color, this is often not easy. It can depend on if there are enough doctors or hospitals near you. It can also depend on if you can get quality health insurance, which is often tied to what kind of jobs are available to you. One less well-known (but really important) factor is that some groups have been left out of research in the past. From a scientific standpoint, that means researchers don’t know as much about why people in these groups stay healthy or get sick.
The All of Us Research Program is trying to change that. From the beginning of this program, one of our core values has been making sure that our participants reflect the rich diversity of the United States. Today, about 80% of our participants are from groups that have been underrepresented in research in the past. The information these participants provide may help researchers learn more about factors influencing their health outcomes. All of Us is committed to enabling research in which everyone is seen and counted.
Ending health disparities will require many different approaches. Research is one powerful way to make a difference, and we hope that All of Us will help researchers find new ways to improve health and health care for everyone.
To learn more:
July Is National Minority Mental Health Awareness Month
Mental health conditions can affect anyone. We know that genetics and other factors can affect mental health differently in different racial and ethnic groups, but we don’t know enough about why that is. That’s one reason mental health research—especially with communities that have been left out of research in the past—is so important.
All of Us is gathering information that researchers can use to study a variety of conditions. These include mental health conditions. One way we’re doing that is through the COvid-19 Participant Experience (COPE) survey.
You can help add to the diversity of COVID-19 pandemic data by taking the COPE survey. Taking the survey will help researchers understand your experiences during the pandemic. It will also help them learn how these experiences affect your health and your community’s health. The survey asks about social distancing, social support, mood, stress, and more.
We’ve released the COPE survey several times since May. Thousands of you have shared your experiences, but we hope to hear from more of you. We want to make sure that the information we gather represents you and your community. If you’ve taken the survey in May, June, or July—or all three—thank you! Having your answers over time can help researchers learn how experiences change as the pandemic goes on.
Your voice matters. To take the COPE survey, log in to your All of Us account or sign up today. Thank you for helping us learn about your experiences.
For more information on mental health topics and research, visit https://www.nimh.nih.gov/health/index.shtml.
If you or someone you care about needs help, visit:
Check your All of Us account for the Consent to Receive DNA Results
All of Us is getting ready to start analyzing DNA. To do that, we’ve started adding a new consent—the Consent to Receive DNA Results—to our participants’ accounts. If you see this consent in your All of Us account, complete it to let us know whether you want to get DNA results in the future when they are ready. You can answer Yes, No, or Don’t Know. And you can always change your mind later. If you don’t see it in your account yet, don’t worry! You’ll see it in the next few weeks.
Reminder: Link Your Fitbit with All of Us
If you have a Fitbit, you have an easy way to share more data with All of Us. Fitbits can provide information about physical activity, sleep, heart rate, and more. Sharing this information can help researchers learn more about how lifestyle and environment affect our health. If you’d like to share Fitbit data with us, just log in to your participant account and choose “Sync Apps & Devices.” You can decide what types of data to share. And you can stop sharing at any time.
Participants using an iPhone or iPod touch can now share their Apple Health data with All of Us. To share your data, you must use the All of Us Research Program mobile app on either of these devices. After connecting your Apple Health account, you can select the data you want to share. This could include steps, heart rate, weight, sleep, and more. If you want to check which data you’re sharing with All of Us, visit the Apple Support website at https://support.apple.com/guide/iphone/share-health-and-fitness-data-iph27f6325b2/ios.
All of Us Gathers Data on COVID-19
All of Us has launched two efforts—in addition to the COPE survey—to help researchers learn about COVID-19. In the first project, we’re testing blood samples from participants who joined the program recently. These tests will look for antibodies to the virus that causes COVID-19. The tests will help us learn about exposure to the new coronavirus in different areas. They’ll also help us learn about exposure over time. In the second project, we’re collecting information related to COVID-19 from the electronic health records of participants who have shared them. The information could help researchers learn more about COVID-19 symptoms and associated health problems.
Researchers Begin Using All of Us Data
All of Us is excited to announce that the Researcher Workbench has moved into its next phase. On May 26, we started inviting researchers to use the tools. This means that researchers are starting to use data from participants like you to study health questions—a big step forward!
Learn more about the Workbench and the beta testing phase: https://www.researchallofus.org/workbench/
When Kolbi Brown joined All of Us at NYC Health + Hospitals Harlem in 2017, he wasn’t just starting a new job. He was changing careers. Kolbi had worked in real estate and property management for about 10 years, mostly in Harlem. He saw the issues that people around him were facing—including health problems. And he started to wonder what he could do to help the community where he lived and worked. “All of Us came along,” he says, “and gave me the opportunity to be a part of something that will be really meaningful.”
One thing that drew Kolbi to All of Us was its commitment to including communities that have been left out of health research in the past. “I’m in Harlem, which has a large African American presence. Our community is often underserved in biomedical research,” he says. With the information that All of Us is gathering, researchers could learn more about what affects these communities’ health. And that knowledge could help reduce health disparities in the future.
Back in the program’s early days, Kolbi was the first person selected to work for All of Us at its Harlem site. The hospital needed someone who could hire a team, manage a budget, and work with the community. Kolbi thought his skills from property management would transfer well in getting the site up and running—and they did. The hospital began enrolling participants a few months after Kolbi arrived.
Today, Kolbi is the All of Us program director at NYC Health + Hospitals Harlem. He also coordinates efforts to keep participants engaged across all the sites in New York City. That task is part of the program’s focus on including participants as partners. As he says, “We’re not trying to take data, take biospecimens from people, and then you never hear from us again.”
Usually, staff at the Harlem and other New York sites spend a lot of time talking to participants—and potential participants—face to face. But the COVID-19 pandemic has changed that.
The pandemic hit New York City especially hard. The changes, says Kolbi, were abrupt—and personal. He became ill with COVID-19 the same week that All of Us paused in-person activities in March. (Thankfully, he has since recovered.) Staff members began checking in with participants by phone. “We want our participants to know that not only do we value them for being part of the program but we care about their well-being,” Kolbi says.
Within the city, communities with large minority populations or with lower incomes were hit hardest. The pandemic is a stark reminder that health disparities are still with us. It can also be a call to action, Kolbi says. “This gives us a way to reach out to communities and to explain, ‘This is why we need your participation in research.’”
It’s also an opportunity to learn. Kolbi hopes that All of Us will be able to help researchers better understand the pandemic itself. Their findings could help us deal with future crises. “I feel like the work that All of Us is doing—it was important before,” he says. “But it has shown itself in real time to be even more important now.”
To learn more about Kolbi and his work, watch this video.
You may have heard the saying “Prevention is the best medicine.” For the virus that causes COVID-19, a big part of prevention will be a vaccine. Vaccines can prevent deadly diseases. But designing and producing a safe, effective vaccine can be a long and tricky process.
Vaccines work by making us immune to a disease. To do this, they may include small amounts of weakened or killed germs, genetic material from germs, or combinations of both. But the vaccines don’t have enough germs in them to make us sick. With these germs, a vaccine sends a message to your immune system to make special germ-fighting proteins called antibodies, just like it would if you were exposed to the disease. This way, you can become immune to that disease without having to get the disease first.
We now have vaccines for many diseases, from polio to measles to chickenpox. Researchers working on the COVID-19 vaccine know their task is urgent. Still, there are many steps to follow, and each step takes time to do safely and correctly.
First, scientists have to study the virus to understand how it infects us. Then they must make a potential vaccine—called a vaccine candidate—to test. The scientists try to make a vaccine candidate that has just the right mix of weak or inactive germs, cells, and other materials. This step is done in a laboratory before the vaccine candidate is tested in people.
When the time comes to test the vaccine candidate in people, it happens in at least three stages, called phases.
Once researchers find a safe and effective vaccine, there are more time-consuming steps. Manufacturers have to make a lot of the vaccine. They have to get it to health care workers around the world. And then, of course, we all have to go get vaccinated!
As COVID-19 became a worldwide threat early this year, researchers at NIH’s National Institute of Allergy and Infectious Diseases, headed by Anthony Fauci, M.D., quickly got to work on developing a vaccine. The first NIH-funded Phase I trial started in March. In April, NIH helped form an international team of government health agencies, nonprofit organizations, and drug companies. The team aims to speed up vaccine development by sharing resources and working together.
Much like All of Us, vaccine research also benefits from having people from all backgrounds participate. By including more diverse groups of people, researchers can learn more about how vaccines affect people differently. There are several studies currently underway, and there are many resources available if you are interested in participating.
Making a vaccine is a big job. But we’re all in this together, and working together will be the key.
To learn more about NIH efforts to create a COVID-19 vaccine, visit https://www.nih.gov/news-events/news-releases/nih-launches-clinical-trials-network-test-covid-19-vaccines-other-prevention-tools. To learn how to volunteer for a COVID-19 prevention study, please visit https://www.coronaviruspreventionnetwork.org/.
# of participants who have completed the consent process
# of participants fully enrolled*
*Fully enrolled participants are those who have shared their health information with All of Us, including giving blood and urine or saliva samples.
Note: All of Us has paused in-person enrollment and other events to protect public health and limit the spread of COVID-19. You can still sign up and participate online at JoinAllofUs.org.