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Many participants sign up for the All of Us Research Program in hopes of learning about their genes. But genes are just part of everyone’s story. There’s so much more that makes you you.
That’s why we ask you to fill out surveys. Your answers go into our database, along with the other health information you generously share with the program.
By exploring the database, researchers can look for connections between your confidential survey answers and health. For example, we know that people who smoke are more prone to lung cancer. But are there factors that make some smokers more likely than other smokers to get cancer?
All of Us wants to help researchers explore what social and environmental factors contribute to health and well-being. These factors are called social determinants of health. A new survey will help us gather this information. This new survey asks about your surroundings, your support system, whether you feel safe in your environment, and other things.
Lyndsey Sickler, an All of Us Participant Ambassador and co-chair of Proud Haven, a housing resource for LGBTQIA+ individuals in Pittsburgh, has been working in the field of social determinants of health for more than two decades. Mx. Sickler points out that many research studies ask about race or age but don’t even consider social determinants of health.
People get asked about the big stuff—race, income, or sexual orientation—but not about other factors that make us who we are. “Not the fact that they were raised with an alcoholic parent, not the fact that they are a previous drug addict, not the fact that they have these other issues that impact their everyday health decisions,” Mx. Sickler says. Positive factors, like growing up in a stable home or having good friends, also influence our health.
The new survey is called Social Determinants of Health, and it might be in your portal already. It asks questions about how you get health care and what living in your neighborhood is like. It also asks about whether you’ve experienced discrimination and whether you go to church or have other spiritual practices.
The factors Mx. Sickler refers to and some questions on the survey can seem very personal. But Mx. Sickler says that’s part of the point. “I feel very strongly about how important this kind of information is, because we don’t talk about this stuff enough,” they say. “And when we don’t talk about it, we breed shame, whether or not we mean to.”
“Talking about it” in this survey means only that your answers go into the database. To protect your privacy, All of Us doesn’t share your name, birthdate, or other identifying information with researchers.
Mx. Sickler says the information the survey asks about is already affecting your health and your access to quality health care in your everyday life. For example, they mention community support: People who live in rural counties often do not have the same access to support organizations like the ones you can find in Pittsburgh or other big cities. “You’ve heard of things like food deserts. Well, there are resource deserts,” Mx. Sickler says. “Gathering this information on a national level is imperative. Because at the end of the day, it’s going to help us in the future.”
In that future, All of Us hopes to understand the larger influence that social determinants have on us. That understanding might help researchers tailor health treatments to all—to each—of us. And that is the goal of precision medicine.
Check out the list of resources for social determinants of health at the Centers for Disease Control and Prevention (CDC) Within the survey, we list more specific resources for participants who might want them. If you’re ready, you can take the survey now.
Log in to your All of Us account today.
More than 432,000 participants who have completed the consent process.
More than 307,000 participants fully enrolled.*
More than 1,000 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.
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.
All of Us recently welcomed a new chief engagement officer, Karriem Watson, D.H.Sc., M.S., M.P.H. Dr. Watson is trained as a research scientist. But he wants All of Us participants to know one important thing: “My goal is to do research with you, not do research on you.”
That desire to do research with people as participants and not just as subjects of a study drew Dr. Watson to All of Us in the first place. Armed with a doctorate in health science and master’s degrees in medical research and public health, he started out doing basic clinical research. (That’s the kind of research that might lead to the latest drug in your medicine cabinet.) Then Dr. Watson switched gears to work to improve access to research and equity for groups of people who had been left out of research in the past.
Dr. Watson was at the University of Illinois Chicago (UIC), doing research that brought in community members as partners. With community partners, he studied inequities in health among people of different racial and ethnic groups. While he was there, All of Us invited health care provider organizations to apply to work with the program. The All of Us approach to making participants actual partners fit with his own efforts, so he applauded the opportunity.
“I was really excited about the fact that early on, the program was doing some intentional engagement,” Dr. Watson says. All of Us laid out its goals and plans to community members, he said. Then the program asked them, “How do you feel about that? What are some of the barriers? What are some of the things that would make you not participate? And what are some of those drivers that would make you participate?”
When community members are partners in research, they help inform the research questions. They help ensure that scientists share data that is valuable to participants. For All of Us, participants help shape the research by being a part of committees and boards that run the program, Dr. Watson explains. This includes helping to determine who gets access to the data.
As chief engagement officer, Dr. Watson will be working to build one of the most diverse datasets in the world. But he also wants to ensure that the community of researchers exploring the data is just as diverse as that dataset.
How does Dr. Watson plan to achieve the goals he has set for himself and All of Us? There’s a science all about engagement that he will draw on. Engagement science includes things like social networks and community science. Social network science shows how information travels through friends, family, and other people you trust. Citizen science involves the public helping to solve real-world problems. Some of our most important scientists have been of the citizen variety. Erin Brockovich and others like her are members of the public who followed the data to improve lives.
Dr. Watson wants to acknowledge and thank the participant ambassadors he’s worked with during his time with All of Us. They helped him on his road to chief engagement officer. “The outcry of support that I received from them reaffirmed that I was making the right decision,” he says.
Happy early Thanksgiving! Thanksgiving is coming up next week. It’s a time to gather, eat delicious food, and share memories. Unfortunately, the ongoing COVID-19 pandemic can make gathering in person a challenge. Using technology to video-chat may help you reconnect with extended family members from near and far.
When you’re asking your family members for their secret pumpkin pie recipe or how their favorite team is doing, consider asking them about their health, too, because Thanksgiving is also National Family Health History Day. Whether you’re celebrating virtually or in person, it’s important to have these conversations with your family. Ask your family members about their current health, as well as conditions that may be common in members of your family. Then make a plan to talk to your health care providers. Knowing your family health history could help you catch health problems early—or even help prevent them.
Talking to your family about health information can be overwhelming. Keeping track of all the information can be tricky, too. Here are some ways to make it easier:
Being aware of health conditions that run in your family, like cancer, diabetes, or heart disease, is important. Just because a disease is common in members of your family doesn’t mean you will get it. But you may be at increased risk. That means it’s especially important for you to take steps to prevent such issues. Those steps might include the following:
Connect with your health care provider, who will know the best plan for your unique family health history. Learn more from the CDC about acting on your family health history.
Information on family health history is important for research, too. All of Us recently combined our surveys about family health history and personal health history. If you’ve already taken those surveys, you don’t need to take the combined survey. But if you haven’t taken them, think about logging in to your All of Us account to take the survey after you talk to your family at Thanksgiving.
Have You Taken the COVID-19 Vaccine Minute Survey?
We invited you in September to take a quick “minute” survey about COVID-19 vaccines. Finding out who, when, and why people get vaccinated—or don’t—might help researchers understand the larger picture of health care. And now we have booster shots and extra doses to think about.
If you haven’t taken the COVID-19 Vaccine Minute Survey, you can log in to your account and find the survey on your dashboard. If you took it before boosters became available, the survey might show up on your dashboard again so that All of Us can ask about boosters. If you have finished taking the survey, you can review (but not change!) your answers in your My Data section under Surveys.
Voices of All of Us
New Yorker Ysabel Abreu has been on the All of Us Participant Advisory Board since 2018. Read how she has been a portrait of perseverance in our new feature, Voices of All of Us.
Ms. Abreu is currently serving as a liaison between government and local communities in three districts in the Upper East Side and Harlem in the Office of the Manhattan Borough President. Her East Harlem neighbors helped her as she made a home here after immigrating from the Dominican Republic. Now she gives back through her work on the advisory board, a role that meshes with her love of community outreach and support. “What I love about All of Us is, it’s grounded in the community,” Ms. Abreu said.
All of Us Selects New Chief Medical and Scientific Officer
Geoffrey Ginsburg, M.D., Ph.D., is our new chief medical and scientific officer. His main role will be to help set the scientific vision for All of Us. He will also oversee how All of Us collects and organizes data. Dr. Ginsburg will work to bring in new kinds of data to foster a wide range of scientific discoveries. And he will help grow new joint efforts with other research organizations.
Dr. Ginsburg comes to us from Duke University School of Medicine, where he was the founding director of the Center for Applied Genomics & Precision Medicine. Earlier, he studied the genetics of heart diseases at Harvard Medical School. Dr. Ginsburg helps nurture genomics and precision health through leadership roles at the National Academies of Sciences, Engineering, and Medicine. He will be joining All of Us in January 2022. Learn more about Dr. Ginsburg.