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When the COVID-19 pandemic hit last year, people had to stop gathering indoors. That meant big changes for the All of Us Research Program. In March 2020, we had to pause our in-person recruitment and enrollment efforts.
In February, All of Us partners were meeting with people daily, inviting them to learn more and to join the program. We were enrolling up to 900 people like you every day. To enroll, many participants went to partner sites to give blood and urine samples. They also stopped by to get help with online surveys. The surveys covered their health, medical history, and other topics. Then much of the United States began to hunker down and socially distance. We paused all in-person activities so we could protect public health.
We didn’t know how long the pandemic would last. But we started thinking about how to reopen when it became safe to do so.
We created a team to come up with a safe process to reopen the brick-and-mortar sites. The team started planning in April 2020. With so many unknowns about the virus, the team focused on safety. That meant safety for participants, safety for staff, and safety for surrounding communities.
The plan was to reopen in phases, starting in July 2020. Sites with fewer COVID-19 cases in their surrounding communities could reopen first. The sites used sources such as Covid Act Now’s color-coded tracker to decide where it was safest.
The team used safety guidelines from the Centers for Disease Control and Prevention (CDC). Staff would have to wear hospital-grade masks. Participants also would have to wear masks. The sites needed to have enough room for social distancing. Some sites asked that participants wait in their cars until staff was ready for them.
Closing down sites for at least four months affected some people more than others. Most of our activities were online. Participants who didn’t have access to computers or didn’t use them all the time were doing fewer activities.
At the same time that sites were starting to reopen, the team began testing a few pilot programs to make staying involved easier. One pilot program let some people donate saliva at home rather than coming in to give a blood sample.
For online tasks, All of Us started a program called CATI to help reach those without access to the internet or who don’t use computers much. CATI stands for Computer Assisted Telephone Interviewing.
In CATI interviews, a participant gets a phone call from a staff member. The staff member has been specially trained on the surveys and in computer security. The staff member reads the survey questions to the participant. As the participant answers, the staff member enters the responses and can clarify questions.
So far, the CATI pilot has gotten wonderful feedback from participants. Comments include, “This was easier than getting my brother to help me,” and, “This was helpful. I don’t have a computer.”
The pandemic pilot programs are winding down as reopening continues. As of July 6, 2021, 179 sites in 19 states have reopened, and another 94 have plans ready to go. The sites use checklists to make sure they have all requirements covered.
Once the pandemic recedes, All of Us will have decisions to make. How many of the new services should we keep (and maybe expand) for the rest of the program? These services include things like CATI.
“Given that we’ve made many changes during the pandemic, things won’t go back exactly to the way they were,” says Sarra Hedden, Ph.D., one of the reopening team project leads. “For some sites, we’ll have more ways they can take part in the program. Ones that don’t require in-person activities. The pandemic has gotten us thinking of ways to make it easier for participants to be involved.”
It’s not just the enrollment sites that are opening their doors again. Community sites have been planning ways to safely reopen in person. Some All of Us partners took part in the Healthy Families Expo in Waco, Texas, in early June. The expo shared health information, provided services like blood pressure screenings, and held giveaways. The Temple Missionary Baptist Church in Duncanville, Texas, rallied the public with Let’s Get Moving Through the Pandemic. There, attendees could sign up to receive the COVID-19 vaccine. All of Us also joined Our Community Health Festival in New Orleans, Louisiana. At the festival, guests could learn more about All of Us and sign up for the program. And in Corona, New York, the National Alliance for Hispanic Health hosted the 15th Annual ¡Vive tu vida! Get Up! Get Moving!®. Attendees had access to no-cost health screenings, health information, All of Us information, and COVID-19 vaccines.
We know we’re not out of the pandemic woods yet. We know some areas are still struggling to get vaccinations up and COVID-19 cases down. But we can’t hide our excitement at seeing All of Us participants like you face to face again.
If you’re unable to enroll in person, you can still sign up and participate online at JoinAllofUs.org.
More than 386,000 participants who have completed the consent process.
More than 283,000 participants fully enrolled.*
More than 600 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.
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 1951, a 31-year-old Black woman named Henrietta Lacks reshaped medical research. But she didn’t know it. When White doctors treated her for cancer at Johns Hopkins Hospital, they took some of her cancer cells. They did so without her consent, an injustice that happened especially with communities of color.
Her cells grew and grew and grew. This was the first time human cells grew in test tubes for more than a few weeks. They are still growing today. Researchers named them HeLa cells (for Henrietta Lacks) and called them immortal. These cells transformed medical research. Ms. Lacks’ cells have been used in the development of polio vaccines, cancer research, and even COVID-19 research. They have been a resource for research that has earned three Nobel Prizes.
But for a long time, no one knew the woman behind HeLa cells. She had no one in the scientific world to speak for her. Researchers used HeLa cells without naming her or getting her family’s consent. When doctors finally talked to Ms. Lacks’ family, they didn’t provide a clear picture of what her cells were doing for research. With little access to health care, her family could not even reap the benefits of new, improved medicine.
Many scientists see immortal cells as a way to learn about biology and medicine. But Ms. Lacks’ family and other people see her immortal cells as a piece of Henrietta living on. Bridging those points of view requires openness and candor.
Since Ms. Lacks’ time, laws have evolved to require informed consent for patients and research subjects. These laws protect people from being taken advantage of. They also help build trust between researchers and participants through transparency.
Ms. Lacks’ story became known to her family and the world. Her children and grandchildren created foundations to honor her. One foundation led by her family is the HELA100 organization. These organizations work to bring awareness to Ms. Lacks’ story. They also seek to improve health care and research for groups that were left out of research in the past.
“The takeaway from my great-grandmother’s story is that we are no longer just patients. We’re partners in our own health care,” says Ms. Lacks’ great-granddaughter Veronica Robinson.
Ms. Robinson is an All of Us Research Program advocate. She is helping to improve access to precision medicine and helped kick off the University of Illinois at Chicago’s joining of All of Us. She also sits on a panel at NIH that reviews research into the HeLa genome.
Ms. Robinson says she knew she and her family wanted to be part of All of Us as soon as President Obama announced the program in 2015. They recently gave talks at the All of Us spring engagement meeting. That meeting aimed to find ways to connect participants and their communities with the All of Us family.
“My great-grandmother was a Black woman who has made possible some of the most significant medical advancements of our time,” says Ms. Robinson. “She has been advancing science for 50-plus years. So it was a no-brainer that my family wanted to advance science for another 50 years. And we felt like All of Us was the place to do it. This was the research that we’ve been waiting for.”
Learn more about Henrietta Lacks and her contribution to medical research at HELA100. Originally set up to celebrate the 100th year of her birth, the organization will keep honoring her with annual conferences.
As more people receive COVID-19 vaccines, states are lifting restrictions. Family members who live far apart are seeing each other again. Some workspaces—as well as summer schools and camps—have started opening up. And the Centers for Disease Control and Prevention (CDC) says that people who are fully vaccinated can go without masks (except in places that require them).
We are seeing vaccines change our lives. It’s not the first time.
Vaccines have been saving lives for many years. When scientists create a vaccine for a disease, the disease’s impact can change drastically. For example:
Research at NIH has helped lead to many vaccines, including the HPV vaccine. NIH has also helped find better ways to make and test vaccines. Development of the COVID-19 vaccines may have seemed fast. But that work was built on years of NIH research, too.
The virus that causes COVID-19 is one type of coronavirus. NIH researchers studied coronaviruses for years before the COVID-19 pandemic. They decided to create a vaccine that they would be able to customize for different types of coronaviruses. When the pandemic began, that planning paid off. Researchers created a COVID-19 vaccine within a couple of months. The vaccine then had to be tested to make sure it was safe and effective. Read more about how researchers created this COVID-19 vaccine.
Vaccines are one major way that health research can improve our lives. Want to learn more? Check out NIH’s vaccine breakthroughs. Or read about the history of vaccines from the National Museum of American History.
COVID-19 Discovery: Study Offers New Clues of Early SARS-CoV-2 Infections in the United States
All of Us participants come from across the United States. And some shared blood samples with the program before the COVID-19 epidemic started in the United States. That meant our program could help answer an important research question: When did SARS-CoV-2, the virus that causes COVID-19, begin to appear across the country?
To find out, All of Us tested blood samples for antibodies against the virus. This kind of testing can show whether someone had the virus in the past. We started testing samples that participants gave in March 2020. Then we worked backward to January 2020.
We found that some participants had antibodies before experts knew people were getting sick. This means the virus had infected people earlier than we initially thought. The results might help researchers learn more about when and where the virus first appeared in the United States.
Learn more about what we found in the All of Us antibody testing project.
All of Us Partner Hosts Minority Student Research Symposium
To make medical breakthroughs that can help all of us, health research must involve people from many different groups. That includes racial and ethnic minority groups. And this doesn’t stop at research participants; it includes researchers, too. Currently, researchers are less likely to be from racial and ethnic minority groups.
To help change that, the Black Greek Letter Consortium (BGLC) hosted the Minority Student Research Symposium in May. BGLC is an All of Us partner. With support from BGLC, students conducted various research projects. The students used data from All of Us and worked with mentors. The students then presented their work in a virtual poster session. Scientists and community members voted on the best projects. The winning students received prize money.
Students who took part in the event gained experience conducting research. They also learned about the diverse health data that All of Us is collecting. The data could help them with future research. After the event, many of the students said they were interested in conducting research in the future. To visit the virtual exhibit hall and view the winning research projects, register on the event website.