Ambitious national health study invites participants to help advance medical breakthroughs

When Elena Ozturk asks clients if they’d like to take part in a nationwide medical research program, she doesn’t know their health history. She’s not sure whether they can easily see a doctor when they need to, or if they have insurance.

For All of Us, a National Institutes of Health program, none of that matters. In fact, the program intentionally seeks participants from all walks of life—people of all races, ages (over 18), education and income levels, health backgrounds, and regions of the U.S.

“I will start with asking, ‘Have you heard about All of Us?’” says Ozturk, who works with Seattle’s Latino community through the nonprofit El Centro de la Raza.

She follows up by telling them that Latinos have been underrepresented in medical research, but the All of Us program could change that. 

Created under the Obama administration and launched in 2018, All of Us aims to collect and track the health data of 1 million participants. The program’s goal is to create the world’s most comprehensive health database to improve medical research, speed up breakthroughs and advance treatment of all kinds of conditions.

Participants share access to their electronic health records, fill out surveys, and may provide blood or other biosamples for lab tests. Their identity is kept private, and their information is stored in a secure database that researchers can tap for use in medical studies.

The All of Us Research Program has partnered with community organizations and health insurance providers including Regence to reach participants across the U.S. To date, more than 350,000 people have signed up—more than 80% of whom are from underrepresented groups—and the program is looking for more to reach its goal of 1 million.
 

How diversity in research can improve health outcomes

Diversity is critical to the program’s mission. Historically, medical research has focused heavily on white people—and white men in particular. That has resulted in a lack of knowledge about many others, including LGBTQ+ individuals, communities of color, and specific ethnic groups. Similarly, people with lower income, less education and those who live without consistent access to health care have largely been excluded from earlier research.

By collecting data on a vast and much more varied group, the All of Us program aims to fill those existing knowledge gaps and provide scientists the information they need to develop better treatments that are tailored to specific individuals.

Researchers will use the database to examine how genetics, environment and lifestyle affect health and play a role in different illnesses. Those scientific discoveries could help doctors increase health equity through more effective treatments and prevention efforts. They may also help health care providers learn how to better serve individuals who have been misunderstood or mistreated by the health care system in the past.

What researchers learn is likely to be powerful, says Dr. Drew Oliveira, senior executive medical director at Regence, and may lead the medical profession to confront some difficult truths about its past. The database could, for example, help physicians pinpoint why Black women face much higher rates of death and complications related to pregnancy and childbirth than women of other races.

COVID-19 is a timely example of a disease that has sickened and killed Black, Latino and Native Americans disproportionately—and that’s something All of Us researchers are already studying. Starting in the spring, All of Us participants began taking surveys about their experiences related to the pandemic, answering questions about precautionary measures, testing and infections as well as their stress levels, work status and finances.  

Treating participants as partners

All of Us aims to upend traditional research studies not only in its scope and inclusivity, but also in its approach to working with participants. Instead of treating participants as mere lab subjects, it strives to treat them as partners. Daniel López-Cevallos, an Oregon State University assistant vice provost and associate professor of ethnic studies who has helped the program’s outreach efforts in Corvallis, says a more caring, collaborative research model will be critical to the program’s success.

An All of Us Research Program team member collects a blood sample from a participant. (Credit: NIH)

“We have a history of medical research having a particular agenda and excluding black and brown communities,” he says.

That history has bred mistrust among many communities, López-Cevallos says, but All of Us has a chance to conduct scientific research in a new way that acknowledges history, recognizes mistrust and demonstrates that it has a community’s interest at heart.

Ozturk says the program makes it easy to participate and gives people a chance to learn more about their own health. If a participant chooses to provide a DNA sample, for example, All of Us shares the results with them, giving them the opportunity to learn about their genetic makeup, including details about their ancestry and predisposition for certain health conditions.

Studies using All of Us data are already underway on things like cancer, heart disease, Alzheimer's, depression, diabetes, autoimmune disease and more. But the true power of the database will develop years from now. More time equals more data, and tracking health over several years will give researchers a wealth of information. That’s why the program asks participants to consider this a long-term project and plans to collect data for at least a decade.

Ten years is a long time, but Ozturk emphasizes to potential participants the opportunity they have to be part of something important and meaningful. “Why join? If not for themselves, for all the other people—future generations to come,” she says. “This research will benefit communities left out in the past that we don’t know anything about.”

To sign up or learn more about sharing your data with researchers, visit joinallofus.org/bcbs.