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Happy Women’s History Month! At the All of Us Research Program, we celebrate the many women who work hard to help us reach our goal of creating one of the most diverse health databases in history.
To learn more about what it’s like to be a woman working in science, we asked six women at All of Us about their career paths. These women contribute to the program as researchers, participant partners, and program directors. Below, they share their successes and some important lessons they have learned along the way.
Greatest career successes (so far!)
Many people start careers in science because they want to figure out the mysteries that make the world work. Some make brand-new discoveries. Take Edina Harsay, Ph.D., a participant partner and member of the All of Us Steering and Executive Committees. When she was just starting her career, she combined computer science and cell biology to identify a new protein. Now researchers around the world are studying this protein, called AVL9, for its possible role in colon cancer.
Some researchers love science because they can use it to help people. All of Us researcher Hoda Anton-Culver, Ph.D., has spent her life studying cancers—specifically types of cancer that can run in families, such as breast, colorectal, and prostate cancer. Now she directs the Genetic Epidemiology Research Institute at the University of California, Irvine. Holly Nicastro, Ph.D., M.P.H., says she landed her “dream job” with All of Us through the Nutrition for Precision Health program, which will allow researchers to discover how the foods we eat affect our health.
Sometimes the highlight for scientists is not just what they discover but how they do the work. For Nazia Hussain, M.A., a participant partner on the All of Us Steering Committee, the draw is getting to team up with diverse communities to address needs in health care and education.
Engaging communities is also important to Michelle Hamlet, Ph.D. As the director of cohort development for All of Us, she is responsible for bringing people into research by enrolling health care provider organizations. Dr. Hamlet has years of experience in getting people involved with research. More than a decade ago, she and her team formed the Community College Summer Enrichment Program, blazing a path for community college students to be more involved with research. “Now there is a guaranteed place for community college students in research labs at NIH,” Dr. Hamlet says.
For some scientists, including Tram Huyen, Ph.D., the biggest successes involve achieving the elusive work-life balance. Dr. Huyen serves as the director of innovation and acting chief of staff for All of Us. She has long realized that it’s important for her mental well-being to be a scientist who still prioritizes her family. She reminds us that a career in science doesn’t require choosing between success and a healthy work-life balance.
“Women have no place in science” is an attitude no one should encounter—and yet a college professor said those exact words to Dr. Hamlet. In 2019, women made up less than one-third of all employed scientists and engineers. Their smaller numbers in some work environments can create challenges. Dr. Nicastro says, “People have spoken over me or directed questions to a male colleague even though I had just presented on the topic.”
Ms. Hussain and Dr. Huyen both spoke about the additional issues that some women face because of other identities they hold, including being a woman of color and being younger. To ensure that her voice is heard, Dr. Huyen says she actively works to develop deep trust and respect with her colleagues.
However, when faced with barriers, Dr. Anton-Culver says, “Women are resilient.” The women at All of Us have some advice for anyone dealing with similar situations:
As for Dr. Hamlet, that same college professor later asked her to represent the college as a researcher at an important institute. With this, she proved to herself and those around her that there is no doubt that women belong in science.
Advice for girls and women who want to get involved in science
There are many ways to be a scientist. “Science is not limited to labs and microscopes,” says Ms. Hussain. “It is in anything that charges your curiosity and desire to advance the way things are.” Dr. Nicastro agrees that curiosity is key, saying, “The things in life that don’t make sense are so much more interesting than the things we can easily explain.”
Even if science is not your day job, you can still take part. You can volunteer at your local science museum or help out at a science-based charity. (Participating in All of Us is also a great way to contribute to science!)
No matter what you're interested in, there is a place for you in the science community. If you want to get involved, Drs. Hamlet, Harsay, and Huyen have some advice: "Know your worth." Surround yourself with people who support you. And last but certainly not least, pursue your passions with "vigor and unabashed confidence."
It all starts with making the decision to explore your interests. No matter who you are or where you come from, remember Dr. Anton-Culver's words: "You have the power to make the world a safer, healthier, and more enjoyable place for all of us."
More than 475,000 participants who have completed the consent process.
More than 326,000 participants fully enrolled.*
More than 1,180 registered projects for the Workbench.
*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 2020, the beginning of the COVID-19 pandemic brought with it many questions. How can we stay safe? How can we protect others? How can we stay connected from a distance? Virtual events helped answer some of those questions. But a shift to virtual events raised other questions: How can we make a virtual event work for people who are deaf or hard of hearing? How can we make it work for people who are blind or have low vision?
Fortunately, All of Us had a partner who could help. The American Association on Health and Disability (AAHD) has been an All of Us partner since 2018. Early on, AAHD helped All of Us make sure in-person events were welcoming and accessible for people with all types of disabilities. As we start to hold more in-person events again, we’re using what we learned then—and since. And when the pandemic started, AAHD helped us make virtual events just as welcoming.
“It’s been a learning curve for a lot of people,” says Karl Cooper. As AAHD’s Director of Public Health Programs, Karl leads the organization’s outreach and engagement work with All of Us. “For us, it was about learning what was already built into virtual platforms and what you could do to go above and beyond what the platform could do,” he says.
For example, captions help people who are deaf or hard of hearing take part in virtual events. Virtual platforms can provide automatic captions. These captions are “fairly accurate,” Karl says. But including a professional captioner in a virtual event is even better. In addition, AAHD learned how to make sure that people who are using screen readers get the most out of a virtual event. Screen readers are software that read the words on a screen out loud. Many people who are blind or have low vision use screen readers. Screen readers can’t read the slides that presenters share in a virtual event. But they can read the chat. So putting any key questions or information in the chat helps people who are using screen readers to participate fully. AAHD also encourages presenters to explain important graphics or statistics that are on their slides. Doing this out loud allows those who are blind or have low vision to fully appreciate what is being presented.
AAHD doesn't work only with All of Us on events. It works with other groups to make sure that people with disabilities learn about the program. And it has helped All of Us create welcoming, accessible, and inclusive materials, such as flyers and handouts.
Making sure people with disabilities can access, use, and relate to the materials is critical. “Disability is cross-cultural,” says Karl. People with disabilities come from different racial and ethnic groups. They may belong to sexual and gender minority groups. And there are different types of disabilities. Including a variety of people in the images we use helps us let people know that they are welcome in the program.
Working toward better health for all of us
All of Us aims to enable research that can help improve health for everyone. To do that, we need to include all kinds of people. In fact, one of our core values is that participation in All of Us is open to everyone. Another is that All of Us participants should reflect the rich diversity of the United States.
We especially need to include groups that have been left out of research in the past. People with disabilities are one of those groups. “So often, the only time people with disabilities are sought out to be involved in a research study is when it’s about their disability,” Karl says. “And that doesn’t help them with general health.”
AAHD’s mission is to ensure health equity for people with disabilities through policy, research, education, and dissemination. AAHD works with people with all types of disabilities. That includes people with intellectual or developmental disabilities. It includes people with mental health disabilities. It includes people with disabilities that affect movement. And it includes people with disabilities that affect the senses, such as vision or hearing. Helping to make sure people with disabilities can take part in All of Us supports AAHD’s mission as well as ours.
Karl believes that All of Us can help lead to advances that could benefit everyone. But that’s not guaranteed—which is one reason including people with disabilities is crucial, he says. “That’s only going to happen if everyone is involved.”
The last two years have been full of quarantines, masks, and COVID-19 testing. But do you remember our requests to fill out the COVID-19 Participant Experience (COPE) survey? All of Us released this participant survey six times between May 2020 and February 2021. The goal was to learn how the pandemic was affecting people’s health, well-being, and daily life. Nearly 100,000 participants took the survey.
Now we’re sharing what we learned, thanks to your willingness to tell us about your experiences. Participants can log in to their portals and see insights about the surveys. Don’t forget, you need to access the Participant Portal to see these insights. It’s a special thank-you to All of Us participants! If you’re interested in joining All of Us to be included in future surveys, you can sign up here.
Clicking through the insights, participants can see trends in where survey-takers lived and how old they were. The findings show how many people had someone to connect with, how many had to juggle work and caring for other people, and how many got vaccinated.
These insights offer many other ways that participants experienced the pandemic, like those listed below. Different numbers of people answered each question, so we’re listing that number too. Some participants took the survey more than once, so the total number of responses can be greater than the total number of participants:
The pandemic is not over yet. But the virus that causes COVID-19 is becoming something we are learning to live with. The insights cover six areas related to COVID-19 and the pandemic:
Participants who want to see how their own answers compared to everyone else’s can see their individual results on their dashboard under My Data.
Although the insights are a special thank-you to the participants, other people might be curious about the information that All of Us collected in the COPE survey. For participants and anyone else interested in learning more, there are other ways to explore COPE data. The All of Us Data Browser features the COVID-19 Participant Experience (COPE) page, a one-stop shop for COPE data.
You can explore the COPE data in the Research Hub by moving your cursor over the graphs (or clicking on them). For example, one question asks, “Have you EVER been near someone that you know, or suspect, had COVID-19?” Most people—84%—said no in the earliest survey. But in the last survey, that number had dropped to 67%.
Remember, All of Us removes data that can reveal who you are. That way, researchers can’t identify you. If you have more questions about your data and how we protect it, read our privacy safeguards.
Sharing your experiences helped researchers learn how COVID-19 affected our individual health. What we’ve learned here might make a difference for the next public health event too. Thank you for being a part of All of Us.
Log in to your participant portal today!
Controlled Tier Release
Last week, All of Us hit a new milestone. We released our first set of DNA information from participants into the All of Us Researcher Workbench. The data includes nearly 100,000 whole genome sequences (WGSs). A WGS includes information about almost all of a person’s DNA. This data can be linked to other information participants share through surveys, physical measurements, electronic heath records, and wearables. Researchers can use this data to connect the dots among various factors that affect health. This has not been easy to do in the past. Thanks to involvement from participants all around the country, we are building one of the most diverse datasets in the world. Read more from All of Us CEO Josh Denny on what this milestone means for the program and for participants.
All of Us Science Day Fireside Chat
Join All of Us on Friday, April 1, at 1:10 p.m. ET for a fireside chat about why participation in research matters! Hear from a panel featuring participant partner Karla Rush; researcher Sally Baxter, M.D., M.Sc., assistant professor at University of California, San Diego; and researcher Olveen Carrasquillo, M.D., M.P.H., associate dean for clinical and translational research at the University of Miami Miller School of Medicine. They will discuss the importance of diversity in a program like All of Us and how they are working toward the common goal of driving medical research forward. Watch live on the All of Us Research Program’s Facebook page: www.facebook.com/allofusresearch.
Voices of All of Us: Lin and Kean Engie
Long-time volunteers Lin and Kean Engie joined the All of Us Research Program last year. For more than 50 years, they’ve volunteered on hotlines, for blood donations, to clean up litter (on water and on land), and more. Learn how they joined All of Us and why they believe big data will bring better health care to all.
Voices of All of Us: Keisha Bellamy
U.S. Army veteran and registered nurse Keisha Bellamy joined the All of Us Research Program to help improve and expand health information. She has lost several relatives, including her father, to untreated health conditions. As a participant ambassador, she finds herself talking about health research whether she’s in a yoga class, at the supermarket, or giving a virtual Town Hall. Read more about Keisha’s story and why she continues to partner with All of Us.
The All of Us Journey Exhibit
All of Us hit the road earlier in March. The All of Us Journey bus stopped at White Oak Community Center in Silver Spring, Maryland, and the Manassas Baptist Church in Manassas, Virginia, to help visitors from various communities learn about precision medicine research. Visitors saw the power of participation in health research firsthand. Check out some photos of the event here! And find out whether the All of Us Journey is coming to a city near you.