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The All of Us Research Program wants to find one million people who mirror the makeup of the country. People in the United States speak more than 350 languages. Spanish speakers are the second-largest group after English speakers. And they live in every state.
In honor of National Hispanic Heritage Month, we’re highlighting the All of Us Spanish Committee. One of our core values is to reflect the rich diversity of the United States. The members of the Spanish Committee are volunteers who make it possible to fully take part in All of Us in Spanish.
Two doctors who came to the United States laid the groundwork for the program in Spanish. They live on opposite sides of the country. They were each working for health care companies that partnered with All of Us.
Fátima Muñoz, M.D., M.P.H., moved from Tijuana in Baja California, Mexico, to San Diego, California. She came to the United States in 2009 to continue her career and learn English. In 2016, she joined San Ysidro Health as the director of research and health promotion. When NIH tapped MITRE to help launch All of Us in 2016, San Ysidro Health was one of the six community health centers that teamed up with MITRE. It has been representing the Hispanic/Latino population since the start.
In Columbia, South Carolina, Carolina Rodríguez-Cook, M.D., worked at Cooperative Health. Hispanic/Latino people make up about 30% of Cooperative Health clients. Cooperative Health also was there at the beginning of All of Us.
Filling a Need
Dr. Muñoz and Dr. Rodríguez-Cook both work with clinics that have a large number of people who speak Spanish. So the two of them and a small group of Spanish-speaking staff at other All of Us partners offered to translate handouts and forms.
This informal activity grew into a formal process. All of Us hired a company to translate program materials. Then the team met twice weekly for many months to review translations. They compared notes. They debated the best words to use. By the time the sites officially opened in 2018, they had materials they needed in Spanish.
“And then we were able to engage Spanish-speaking Hispanic participants,” says Dr. Rodríguez-Cook. “The core of this program is diversity and inclusion, and to get people who never have participated in a study or in a research program to join.”
“We love what we do,” says Dr. Muñoz. “We want to be sure that our communities are getting the correct message in the appropriate way. A message that is not too technical.”
How Do We Get Translation Right?
Translating a document takes more than switching out one word for another. Languages come from cultures. A saying in one culture might not mean anything in another. Or it might mean something completely different.
Another early volunteer, Rima Matsumoto, speaks English, Spanish, and Japanese. She is an engagement counselor at Pyxis Partners, an All of Us partner. She works with national and local community organizations across the country. She helped put together focus groups to translate one of the most important parts of the program: its name.
In English, most people see a “research program” as involving experts who are using science or other methods to study something. But the Spanish word for “research” can mean “investigation,” suggesting law enforcement instead of science. The focus groups helped the Spanish Committee come up with “programa científico,” which conveys what the program is really about.
Finding Common Ground
About 30 people currently volunteer on the Spanish Committee. Jose Guillermo Melo joined a little more than a year ago. A decade ago, he moved from Colombia to Louisiana, then to California, and then to Florida. Like Dr. Muñoz and Dr. Rodríguez-Cook, he came to the United States to master English. Melo used to work as a journalist. Now he is the All of Us senior manager for communications and retention at the University of Miami.
“As a Hispanic person, I found three completely different Hispanic communities in those states. The use of the language is slightly different,” he says. “It is the same language. We understand each other. But sometimes we construct our sentences a little differently. We tend to use some words more than others in some countries.”
That means the committee has to spend a lot of time deciding which words to use. It looks for phrases that will be easy for most Spanish speakers to understand. “The Spanish Committee keeps brainstorming until we find that common language,” says Melo.
Common ground keeps us moving forward together. No matter what language we speak.
More than 407,000 participants who have completed the consent process.
More than 296,000 participants fully enrolled.*
More than 650 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.
Most of us know that secondhand smoke is bad for our health. Researchers continue to find links between what is around us and how it affects us. All of Us is interested in helping researchers learn more, too.
There’s more to health than breathing in cigarette smoke or drinking pollutants in our water. Where and how we spend our time and who we have in our lives also affect our health. This is called a social environment.
“When we think about environment, we often consider air pollution, neighborhood walkability, or green spaces,” says Cheryl Clark, M.D., Sc.D., assistant professor of medicine at Harvard Medical School. “But we don’t often think about the social environment. How you are treated by others and even your position in society can affect your health.”
Researchers generally refer to these social environment factors as social determinants of health (SDOH). “Essentially, we study how where we work, live, play, learn, and worship affects our health,” Dr. Clark says. “All of these factors influence health in some way.”
Studies of such factors might include:
• How easy or difficult it is to have or afford health care
• How much money we have or make
• Crime levels in the places where we live
• Pollution in neighborhoods
• Education levels and their impact on healthy lifestyles
• Social ties to family, friends, and community
• How often we experience discrimination or violence
“Evidence has accumulated showing that context matters when understanding health status and outcomes,” says Maria López-Class, Ph.D., M.P.H., M.S., a project officer at NIH. “It is the accumulation of diverse and comprehensive data that will help explain the health effects across different population groups.”
Interest in researching our social environment has grown over the past 25 to 30 years. Drs. Clark and López-Class chair the All of Us Social Determinants of Health Task Force. This task force is working on ways for All of Us to make this kind of data available to researchers.
“If we can ask a million people from different walks of life—What are they going through? What kind of stresses are they having? What kind of resources do they have? What relationships do they have with each other?” she says, “then we can put together all of those details to get a much better sense of what leads to health or illness for a specific individual or group. That’s really what we’re trying to do in All of Us.”
For instance, imagine a woman who cannot afford health insurance. She worries about what she’ll do if she gets sick. She doesn’t get wellness checks that could find a health issue at an early, more treatable stage because she can’t afford them. Her health is affected both by stress and by missing out on important preventive care. If she does not have a few friends who can help her, she might be even more stressed by her circumstances.
“Stress tends to put wear and tear on the body,” Dr. Clark says. “We can measure it physiologically, for example, through markers we analyze from blood samples. We can also assess stress through survey questionnaires. We can use this information to learn more about what keeps us healthy and what makes us sick.”
The questions researchers ask to understand these social factors may be surprising to a person answering them. People may feel uncomfortable talking about their struggles. They may not realize how that information connects to their health. But their answers are critical. Not everyone has the same social environment. The more researchers learn about what people experience at an individual level, the more they can understand health.
“Some of the questions are going to be personal,” Dr. Clark says. “Some of them may raise feelings. But we need those personal reflections and answers to make sure we have a full picture of what influences health and disease. You can help other people and help scientists know more by sharing.”
You can also learn more about social determinants of health and related research from these organizations:
• Robert Wood Johnson Foundation
• Kaiser Family Foundation
• National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention.
Since the COVID-19 pandemic began, staying away from other people has been an important part of staying healthy. But we shouldn’t avoid our regular health care providers.
Catching health problems early—or even before they start—can make a big difference. For example, screenings can find colon cancer and breast cancer early, when treatment is most likely to work. For people with diabetes, getting an eye exam every year can reduce vision loss. And regular visits to the dentist can help prevent tooth decay or treat it before it leads to tooth loss.
Those are just a few of the reasons regular checkups are so important. During the COVID-19 pandemic, people have made fewer of those visits than usual. In fact, early in the pandemic, the American Dental Association recommended that dentists’ offices only see patients who needed urgent care. But health care providers quickly found ways to protect themselves and their patients from COVID-19 during visits. For example, many offices have rearranged their spaces to allow for more distancing. Staff may wear face coverings and get regular tests. Some offices began offering virtual visits. And the COVID-19 vaccines offer another level of protection.
If you’ve been putting off your regular checkups, there’s no time like the present to get back on track. You can start by talking to your health care providers. You and your provider may decide that it’s time to make an appointment. Or maybe a virtual visit is right for you.
Want to learn more about what tests or visits you might need? Visit MyHealthfinder to get recommendations based on your age and other factors. You can also read more from the National Library of Medicine about how often to get checkups.
Check Your All of Us Account for the COVID-19 Vaccine Minute Survey
You are invited to take a quick survey about COVID-19 vaccines. We call it a “minute survey,” but it might take two!
Finding out which people get vaccinated—or don’t—and when and why they do it might help researchers understand the larger picture of health care.
If you haven’t taken the COVID-19 Vaccine Minute Survey, you can log in to your account and find it on your dashboard. If you have taken it, you can review your answers in your My Data section under Surveys.
Learn More About All of Us Local Advisory Boards
Our participants are our partners, and we care about their feedback. Participants help shape what we share and how we do research. Many of them participate in local advisory boards. They work on protocols, testimonials, and other materials.
We have more than 25 community and participant advisory boards. They meet regularly and provide feedback on program matters, both national and local. Learn more.
All of Us Names New Chief Engagement Officer
Karriem Watson, D.H.Sc., M.S., M.P.H., is the new chief engagement officer at All of Us. He will lead the Division of Engagement and Outreach. His work will help foster ties with all aspects of All of Us. That includes participants, communities, researchers, and providers across the United States.
Dr. Watson has experience leading health centers and community outreach for health centers. He also has a background in public health. He co-led the All of Us Engagement Core at the Meharry-Vanderbilt Alliance. Dr. Watson will focus on engaging people who have been left out of medical research in the past, inviting them to be a part of the All of Us mission to drive new research discoveries.
Learn more about Dr. Watson and his work.
All of Us Welcomes New Director of Health Equity
Martin Mendoza, Ph.D., is the new director of health equity at All of Us. This is a new role on the All of Us senior leadership team. Dr. Mendoza will use his expertise to address health equity issues at All of Us. He will also work to improve inclusion and equity in precision medicine.
Dr. Mendoza comes from the Office of Minority Health (OMH) at the U.S. Department of Health and Human Services. He led OMH’s Division of Policy and Data.