Americans stepping up to share their health data with All of Us: Research program marks first anniversary
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* Mark Barna

Ana Pavon could not figure out why her 5-year-old son was acting strangely. In 2011, he developed jerking motions, facial tics and sometimes shouted uncontrollably. After seeing many doctors over weeks, he was diagnosed with Tourette syndrome.

Her son’s trial-and-error medical experience motivated Pavon to join the All of Us Research Program, one of the largest and most diverse research cohorts in the nation. The Leesville, California, resident, who is Hispanic, hopes the nationwide program might one day improve health care for Hispanics and other U.S. populations underrepresented in medical research, including people with Tourette syndrome. She now serves as a participant ambassador for the program, sharing her experience.

“I know to do this, we must be included in research,” Pavon said at a May event marking the first anniversary of the All of Us Research Program. “Our population is different. Our health needs are different. We need to participate.”

![Figure1](http://www.thenationshealth.org/http://www.thenationshealth.org/content/nathealth/49/5/S1.1/F1.medium.gif)

[Figure1](http://www.thenationshealth.org/content/49/5/S1.1/F1)

Launched in 2018, the All of Us Research Program is working to recruit at least 1 million people, with a goal of creating one of the largest and most diverse research databases in the nation. As of May, 142,000 people had completed initial signup steps.

Image courtesy NIH/All of Us

Launched in May 2018 by the National Institutes of Health, the All of Us Research Program hopes to have 1 million people in the U.S. take part in an unprecedented biomedical research program. As of May, over 192,000 people across America had started the process of joining, and over 142,000 had completed all of the initial steps.

![Figure2](http://www.thenationshealth.org/http://www.thenationshealth.org/content/nathealth/49/5/S1.1/F2.medium.gif)

[Figure2](http://www.thenationshealth.org/content/49/5/S1.1/F2)

About 80% of people who have completed initial signup are from underrepresented groups.

Photo courtesy NIH/All of Us

All of Us participants provide medical information to ultimately improve health outcomes and ways of preventing and treating chronic illnesses and diseases for millions of people. The research program embraces precision medicine, which aims to treat individuals based on their unique diversity and medical history. It uses advances in genomics, state-of-the-art methods to manage and analyze large datasets, and health information technology to improve biomedical discoveries for all people.

“The goal is to help speed up medical research and usher us into this new era of precision medicine, where prevention and treatment are no longer one-size-fits-all, but tailored to the individual,” NIH President Francis Collins, MD, PhD, said at the May event. “Too often, such diverse communities have been left out of the research, and therefore left behind when cures are discovered. So All of Us aims to make a profound commitment to understand and chip away at those vexing health disparities.”

So far, 80% of participants who have completed signup are from groups underrepresented in medical research, All of Us Director Eric Dishman told *The Nation’s Health.* Racial and ethnic minorities, seniors and people with disabilities are part of the diverse demographic.

“They just haven’t been included in the science, and they are often not included in the cures,” Dishman said.

High participation from underrepresented groups, more than half of whom are racial and ethnic minorities, has happened in large part because of the program’s community partners across America. Hundreds of partners and thousands of people have increased awareness and educated the public about All of Us.

Community engagement partners, such as the American Academy of HIV Medicine, the National Hispanic Council on Aging, the National Black Nurses Association and APHA, help motivate diverse groups to join and remain in the program. Other organizations, such as the Asian Pacific Community in Action and the Personalized Medical Coalition, share program information to help raise awareness.

Partners include regional medical centers, federally qualified health care centers and the Veterans Administration.

All of Us plans to follow participants for more than a decade. With the data, researchers will be able to explore early signs and symptoms of diseases such as Type 2 diabetes and Alzheimer’s, comparing individual environmental and biological factors.

Genetic sequencing and family health history can help researchers identify All of Us participants who may be predisposed to Alzheimer’s and other forms of dementia.

“By following their lifestyle choices through surveys, wearable devices recording exercise and sleep, diet diaries and potentially microbiome samples, we will be able to see if any of these variables can influence an individual’s risk for developing a condition,” Collins said.

Cancers, infections and diseases involving mental health, vision and hearing will also be explored, he said.

The data collected can help scientists tackle health disparities, spurring research in prevention that is customized and “tailored to people in different communities, maybe based on where they live or their race or ethnicity,” Dishman said.

A diverse cohort will enable researchers to explore why blacks have a higher mortality rate than whites from heart disease, Type 2 diabetes and hypertension, Dara Richardson-Heron, MD, All of Us chief engagement officer, told *The Nation’s Health.* It could also offer insights into why Hepatitis B is more common among Asian and Pacific Islanders.

![Figure3](http://www.thenationshealth.org/http://www.thenationshealth.org/content/nathealth/49/5/S1.1/F3.medium.gif)

[Figure3](http://www.thenationshealth.org/content/49/5/S1.1/F3)

The All of US Research Program plans to follow participants for more than a decade to build a robust health database.

Photo courtesy NIH/All of Us

“In addition to addressing any of the socio-economic factors at play, greater diversity in research participation could potentially illuminate information and findings that foster enhanced understanding and, most importantly, prevention of health disparities,” Richardson-Heron said.

> **“The program matters because it is getting people engaged who have not been engaged. More than science, it’s about the health of the nation.”**
> 
> — Robert Winn

In South Side Chicago, about 250 black men have signed up for All of Us, Robert Winn, MD, associate vice chancellor and director for community-based practice at the University of Illinois Cancer Center, said at the anniversary event.

“The program matters because it is getting people engaged who have not been engaged,” he said. “More than science, it’s about the health of the nation.”

Nora Volkow, MD, director of NIH’s National Institute on Drug Abuse, said that All of Us is expected to reveal data that could help tackle America’s opioid crisis.

In the U.S., 12 million people misuse opioids and 2.4 million have an opioid use disorder, Volkow said. The trajectory of addiction usually begins with chronic pain, followed by reliance on opioid pain medications, with some users transitioning to heroin. Rural residents, people in poverty, people with public health insurance or who are unemployed or women are among those with a prevalence for chronic pain, she said.

All of Us may help identify environmental and genetic factors, which are currently poorly understood, that lead to better prevention and treatment strategies for pain for specific populations, Volkow said.

The research program is also a springboard for global research. The data will eventually be available for cross analysis with other studies and cohorts. Also, other science research projects will be able to use the All of Us platform, benefiting from the program’s work.

Meanwhile, a host of safeguards have been created to make sure the All of Us data is stored reliably and participants’ identities are protected. Data are encrypted and direct identifiers of participants are removed. Also, participants can opt out of the program at any time.

On May 6, All of Us announced the launch of its interactive public data browser, offering a first look at the data from participants.

The [ResearchAllofUs.org](http://ResearchAllofUs.org) website provides summary statistics from the program’s growing database. Anyone can log in to see the data, from researchers to participants to the general public.

In winter, All of Us plans to launch a platform currently referred to as a research workbench, which one day is expected to be one of the world’s largest and most diverse datasets for precision medicine. Analytical tools are being developed to help researchers make sense of the data.

“It will be a rich dataset of clinical, social, behavioral and environmental data at an unprecedented scale,” Dishman said.

Eventually, All of Us will include data from children, which excites Tina Cheng, MD, MPH, pediatrics director at Johns Hopkins University School of Medicine.

“With advances and biomedical sciences, biotechnologies and bioinformatics, there is tremendous potential in harnessing big data from well-designed cohort studies starting early in life to understand underlying causes of pediatric disorders and early-life antecedents of adult chronic disease,” Cheng told *The Nation’s Health.*

As the program develops, NIH will hold additional workshops to discuss scientific opportunities in more detail and chart future research. In five years, the cohort is anticipated to near 1 million participants, Dishman said, with data from half fully curated.

Dishman expects All of Us to be a model on how to include underrepresented populations in large studies.

“So many groups are coming to us already, saying, ‘We want to leverage your protocol and want to combine datasets,’” he said. “So certainly five years out, I think you will find our data combined with other international cohorts. That’s the future we are all headed toward.”

For more information on All of Us, visit [www.allofus.nih.gov](http://www.allofus.nih.gov). To sign up as a participant, visit [www.joinallofus.org](http://www.joinallofus.org).

*   Copyright The Nation’s Health, American Public Health Association