September 2023

The All of Us Journey represents individuality and community. It promotes diversity and equity. It fosters science education. 

The people who power this traveling exhibit do those things too.  
 
Dianne Beltran and Yurubi Fuenmayor help a small fleet of vehicles tour the United States and promote the All of Us Research Program. We call these vehicles the All of Us Journey. 

The goal of the program is to collect health information from a diverse group of one million volunteers. All three Journey vehicles have kiosks for people to enroll. Two have clinics for bio-sample collections. They also have interactive videos, augmented-reality experiences, and educational games. These activities teach visitors about research in a fun and accessible way. 
 
Beltran and Fuenmayor work at Montage Marketing, a firm that has helped run more than 650 All of Us events. 
 
Beltran is Montage’s group account director. She immigrated to the United States from Colombia in 1996. It took her just six months to learn English. Then she finished college in three years (while working full time). In 2016, the “idea of being able to do something greater” drew her to Montage and All of Us. 

That same year she helped develop the first All of Us Journey. The program launched as a pilot the next year, in 2017. That test run helped Beltran and Montage improve the Journey experience and achieve the program’s chief priority: to meet people in hard-to-reach, historically underrepresented communities. 

“It’s easy to think of what works on paper, for people who have careers and opportunities and education,” Beltran says. “But a lot of people don’t have that background or those resources.” 

In 2020 the COVID-19 pandemic forced All of Us to move from the field to the digital space. That November, Fuenmayor joined Montage. 

Fuenmayor is a senior program manager. This native of Venezuela has been on a long journey of her own. She moved to Colombia in 2012, then arrived in North Carolina four years later. She’s a proud mother of two. 

“I was drawn to All of Us because of my kids,” she said. “As a mom, you want answers to your questions and concerns; you want to make your children as healthy as possible. Doing my job here makes me feel like that is possible. For me and for everyone.” 

Fuenmayor and Beltran helped revamp the All of Us Journey again in 2022, when in-person events resumed. The program had gathered lots of new research during the pandemic. But the Journey exhibits needed new features to share the research safely with participants. So touchless activities were added. And a new offboard enrollment area was set up. That way, people could participate while staying a safe distance of 6 feet apart. 

So far, more than 13,000 people have registered at All of Us Journey events. And in March of this year, two new routes were added. Today three vehicles tour different regions of the country. 

Beltran said keeping up with the ever-changing program is hard. The diversity that defines it is also a challenge. 

Fuenmayor agreed. “The message that resonates most with the LGBTQ+ community is different from the one that connects in the Black/African American community or with Hispanic/Latinos. But if we want to tailor this program to everybody, we have to talk to each person in a customized way. That’s the biggest challenge of this work. But also, the beauty of it,” she said.

Now Beltran and Fuenmayor are planning the bus routes for 2024. They consider several factors: Are the communities on a route underrepresented in biomedical research? Are there FedEx sites along the way, so bio-samples can be sent to the Mayo Clinic? What’s the weather like? And how far apart are the stops? Each Journey vehicle must follow U.S. Department of Transportation safety regulations.
 
In the meantime, Beltran and Fuenmayor are finding satisfaction in the program’s success. 

“Seeing the people who actually benefit from this and knowing we’re making an impact — that’s what keeps us going,” said Beltran. 

The people who lead the Journey field teams feel the same way. 

Benito Escobedo and Josh Perez are lead tour managers. They’re both originally from Texas. 

Last year, Escobedo’s team visited underrepresented communities in his home state, plus New Mexico, Mississippi, Louisiana, Arkansas, Tennessee, Nebraska, Kansas, and Colorado. 

At each stop he makes sure the temperature in his vehicle is right. He sets up the exam rooms too. Then he preps the equipment that two traveling nurses use to take measurements and collect samples. That includes scales, freezers, blood-pressure machines, a centrifuge, and blood- and urine-collection kits. 

Escobedo says relating to participants is usually easy — because he’s one himself. 

“I come from a Latino family with a lot of health issues, like diabetes, cholesterol, heart problems, and cancer,” he said. “I am glad to represent the Latino community. It helps that I'm bilingual and can answer questions that participants have and explain the goal of the program.” 

His favorite part of the job? Seeing different parts of the country, learning about other cultures, and tasting new foods. The biggest challenge? Not seeing his family and friends for months at a time. This year he hit the road on January 20. He won’t be home again until the last week in October. 

But it’s well worth it. 

“I love and take pride in doing my job,” he said. “Knowing it will impact future generations makes me feel like a superhero.” 
 
Perez misses his family and friends too. But he loves traveling and meeting new people. Most of all, he loves seeing the impact his efforts make. 

“It feels really good to be a part of something that’s making a change,” he said. 

Perez has a bachelor’s degree in business. He worked in sales before he joined the marketing industry 12 years ago. This is his second year on the All of Us Journey. 

Like his colleagues, he was drawn to the mission of the program. “It’s important for people to know that we’re advocating for underrepresented communities and actively taking steps to help,” he said. 

In February he and his team headed north from southern California. By August they were in Seattle. In September they’ll be in Salt Lake City, then in Las Vegas during October. Each Journey exhibit stays in each community it visits for a few weeks. That gives the teams time to build a relationship with the people they meet. 

Every day on the road is long and unpredictable, says Perez. Most workdays last from 7 a.m. to 4 p.m. Travel from one site to another can take a full day. And things don’t always go according to plan. 

But he and his colleagues love that part of the job. 

“This work builds camaraderie, and gives me a sense of purpose and adventure,” he said. “We definitely get our daily dose of obstacles. But we also get the satisfaction of knowing that we overcame them as a team, to accomplish our goal.”  

To learn more about what’s on tap in 2023, visit Journey and Events on the All of Us website. 

We talk all the time about All of Us including people from groups that have been left out of research before. Here is what we can learn when we include them: We can resolve conflicts in past research. We can compare how different groups are doing after cancer. And we can see how others fared during the pandemic. Three All of Us Research Highlights explore the health of groups that have been less involved in research in the past.  
 
The first highlight examines puzzling findings about heart disease in Hispanic/Latino people. Past studies have looked at heart disease in this group. Some studies seemed to show less heart disease than expected in Hispanic/Latino people. Other studies showed Hispanic/Latino people have a higher risk for heart disease than other people do. Those findings seem to conflict. How does a group have a higher risk for something if fewer people in the group get it? 
 
To sort this out, researchers looked at the electronic health records of 200,000 people. More than 40,000 of them identified as Hispanic/Latino. All of Us data showed that heart disease rates are higher in Hispanic/Latino people than in White people. 
 
These results align with a higher risk of the disease for Hispanic/Latino people. The group has a higher risk, and it has more, not fewer, people with heart disease. Having so much data from overlooked groups helps researchers make more discoveries faster. 
 
Another study looked at the quality of life of cancer survivors. Previous research on this topic has not always considered people's sexual orientation. In this study, half of the 1,770 cancer survivors self-identified as lesbian, gay, or bisexual. The other half were straight. When researchers asked the two groups about their physical quality of life, there was no difference. But the mental and social aspects of life were worse for lesbian, gay, or bisexual people than for straight people. By including people's sexual orientation in research, All of Us can help researchers understand a person’s whole story. 
 
The third study looked at how people who are blind or have low vision fared mentally during the COVID-19 pandemic. People with disabilities are another group that has been left out of research in the past. People with low or no vision tend to have higher rates of anxiety and depression than people with normal vision. The researchers looked to see how they did during the pandemic. 
 
The researchers examined 325,000 electronic health records. Of these, 7,500 participants had blindness or low vision. Researchers also looked at surveys taken during the pandemic. They found that people with blindness or low vision had higher rates of anxiety or depression than the others in the study. In fact, these rates were twice as high as those reported by people with normal vision. And people who got COVID-19 were even more likely to report anxiety and depression. 
 
Scientists were able to learn more about the differences in our health thanks to people from groups that have been left out of previous research. Their presence — and the diversity and sheer number of participants, like you — is a key strength of All of Us. 

“I want to address problems, not just raise them,” said Normarie Torres-Blasco, Ph.D., assistant professor, early-stage investigator, and clinical psychologist at Ponce Health Sciences University in Puerto Rico.

Dr. Torres-Blasco wants to find solutions to improve health care access, and to ensure that mental illness is addressed by standard health care treatments. She’s been a patient, a caregiver, and a researcher. Her mix of experiences led her to a career studying the link between mental illness and chronic disease.

Dr. Torres-Blasco’s path to health research started as an undergraduate in 2009. She was living with her great-grandmother and namesake, Norma. She was helping with Norma's end-of-life care in Ponce, a city on the southern coast of Puerto Rico. 

Norma suffered from depression after losing her husband of 62 years. Finding therapy was a challenge. Her great-grandmother developed dementia, declined rapidly, and passed away within a year. She was 88. Dr. Torres-Blasco was 18.

“I was very close to her,” she said. “If I had had the knowledge or resources, maybe my great-grandmother would have been with me longer.”

This life-changing experience helped her find her calling. She now seeks to document the need for mental health support to be part of end-of-life care.  

A Path to Research with All of Us

Dr. Torres-Blasco completed her Ph.D. in clinical psychology at Ponce Health Sciences University in 2018. Her thesis explored improving health care access and reducing health disparities among Latinos. She first heard about All of Us at a cancer-research conference for Latinos. She is now a registered All of Us researcher.

“There is strong evidence showing how cancer outcomes are impacted by mental illness,” Dr. Torres-Blasco said. “I started thinking about how cancer patients at the end of life needed mental health services, just as my great-grandmother did.”

Ponce is a city surrounded by rural towns, some in mountain regions. Many people have severely limited access to health care. With the support and guidance of her mentor, Associate Professor Eida Castro-Figueroa, PsyD, Dr. Torres-Blasco is studying cancer rates and co-existing chronic health conditions. 

“She is so focused and passionate about science and serving underserved populations,” said Dr. Castro-Figueroa. “I will always remember our first meeting. Her life experiences really informed her research in a deep way.”

The two began collaborating on health disparities. They documented late-stage cancer diagnoses of underserved Latinos. They looked at people who have less access to early detection. This group also has few psychotherapy and communications resources in Spanish. 

Dr. Torres-Blasco, 32, has already co-authored 21 papers in peer-reviewed journals and is now developing a model for advanced cancer treatments. The model will include communication and psychotherapy for both patients and caregivers. She has a grant from the Research Centers in Minority Institutions (RCMI) program in the National Institute on Minority Health and Health Disparities, which includes funding from All of Us. 

“Researchers from diverse backgrounds bring robust perspectives to the program,” said Karriem Watson, D.H.Sc., M.S., M.P.H., All of Us chief engagement officer. “Dr. Torres-Blasco incorporates her lived experiences. She is giving back to her community by advancing health knowledge.”

She explores how often chronic health conditions occur among those with mental illness. The conditions include cancer, heart disease, and diabetes. She also hopes to understand the connections to ancestry and genetics. 

“People with mental illness have a higher morbidity and mortality rate due to preventable chronic diseases,” Dr. Torres-Blasco said.

She uses the All of Us Researcher Workbench to explore these links. Her plan is to develop strategies to address health care access gaps and disparities.

“I want to make the point that we need more services in mental health for Latinos coping with chronic health conditions,” she said. “That’s one of the main goals of my research with All of Us.”

The Patient: Living with a Rare Heart Condition

Her family and community have been a guiding force in her career. But Dr. Torres-Blasco also understands the challenges patients face firsthand. She has lived with a chronic heart condition her entire life.

Her own health troubles began while growing up in a rural town outside Ponce. At age 5, while learning to ride a bicycle, she felt a sudden, sharp stabbing pain in her chest and collapsed on the ground. Doctors didn’t see any need to perform tests on a young child. They said she just needed to get back on the bike and try again. But similar episodes continued throughout her teens and young adulthood. 

“When I had pain, I would lose consciousness. My body would shut down,” she said. “I tried to accept it and just deal with it.”

Doctors continued to dismiss the signs. They told her and her family that she was dramatic and overly emotional. Finally, at university, she saw a cardiologist. She wanted to test the electrical activity of her heart. They found she had arrhythmia, an irregular heartbeat that can cause trouble when the heart’s electrical signals misfire.

She received medication, but the fainting spells continued. She graduated with her doctoral degree and married her longtime partner, Jose Oscar Santiago, in 2018. It was a calm and happy time. Yet she soon experienced another painful episode. She got more testing and was finally diagnosed with neurocardiogenic syncope. This rare, poorly understood disorder is triggered by the body’s abnormal or heightened response to various stimuli.

Her doctor gave Dr. Torres-Blasco a pacemaker. This has drastically improved her condition and her daily life. In 2021, she gave birth to a healthy baby girl, Stella. 

A Focus on the Future in Ponce

Dr. Torres-Blasco shares the hurdles she has overcome to help others. Dr. Castro-Figueroa taught her how to create partnerships with the students she mentors. Dr. Torres-Blasco advises graduate students to speak up, trust their instincts, and refuse to let others dismiss them.

“I am an open book,” Dr. Torres-Blasco said. “When young women start in my lab, I share my experiences. It is hard for us as women to speak about problems.”

Dr. Castro-Figueroa credits her protege’s success in part to her candor about her challenging times.

“She is a champion!” Dr. Castro-Figueroa said. “She shares the lessons she’s learned through her lived experiences, how she has overcome obstacles. It allows students to think about their own pitfalls and to sit down together to solve them.”

These experiences — as a researcher, caregiver, and patient — are what drive Dr. Torres-Blasco’s commitment.

“I want to give back to my community,” she said. “That is why I have stayed in Ponce.”

All of Us Seeks Participant Partner Volunteers 

A core value of All of Us is to include “participants as partners.” One way we do this is by having participants serve on different groups. We now have openings in groups that will help guide the program as we get ready to begin enrolling children. 

We’re looking for people who: 

• are excited about the future of health
• enjoy working with all groups of people
• have experience with children, such as in health care or as a parent or guardian
• will serve as pediatric champions and share input on child-focused goals

For additional details about this opportunity and to access the application, please click here.

New! Exploring the Mind Activities Available to Try Out

Do you have a moment to take part in our Exploring the Mind research activities? These short new exercises, quizzes, and puzzles are available now. They measure things like your attention span, decision-making, and ability to recognize emotions. Your answers can help researchers better understand how the mind works. 

We hope that you’ll take part.  Like every All of Us activity, participation is optional.

All of Us Shares More DNA Results

All of Us started sharing health-related DNA results to participants at the end of 2022. These participants have chosen if they want to get information about their risk for inherited diseases or how their bodies respond to certain medicines. 

By last February, we had invited 32,000 participants to tell us if they want their health-related DNA reports. Now, we are up to 162,000.

We offer results to participants who have shared a blood sample with the program. Invites go out based on when you shared your sample with us. Right now, we’re sending out about 5,000 invitations each week.

Keep an eye on your email or text messages for your invite. For more information on how to receive DNA results, view our Genomics page. 
 

The All of Us Journey Exhibits 

All of Us is on the road! The All of Us Journey vehicles help visitors from different communities learn about precision medicine research. Visitors can see the power of participation in health research firsthand. You can even sign up to be an All of Us participant if you choose to. 

You can find an All of Us vehicle in the following cities on these dates: 

• September 28 – 30: Kearns, UT
• September 29: Jacksonville, NC
• October 2 – 4: Denver, CO
• October 3 – 6: Raleigh, NC
• October 7: Las Vegas, NV
• October 10 – 13: Fayetteville, NC
• October 10 – 13: Santa Fe, NM
• October 10 – 15: North Las Vegas, NV
• October 16 – 19: Albuquerque, NM
• October 17 – 20: Raleigh, NC
• October 18 – 19: Las Vegas, NV
• October 20: Las Vegas, NV