For years, most health care has taken place under a one-size-fits-all model. Individual doctors may tailor treatment plans and medications, but the overall approach has tended to be more general. But a new nationwide, large-scale research program aims to change that model and ensure that people from all backgrounds have an equal opportunity for quality health care.
Every person is different and requires medical attention that realizes the diverse makeup of Americans and adjusts to fit patients’ specific needs. The All of Us Research Program has a main goal to include more individuals who have traditionally been under-represented in health research, such as People of Color, the LGBTQ community, seniors over 65, those living in rural areas, low income individuals and those without a high school diploma. The research program has already recruited more than 360,000 people to participate in the study, which is expected to last at least 10 years. The program is continuing to reach more people across the nation and increase participation in the study. The more people who are reached means there’s more opportunity in the various health needs researchers can study, allowing multiple health conditions to be examined at the same time.
“It’s really meant to cover anything and everything,” said Julie Moore Vogel, director of research implementation at the All of Us Research Program at Scripps Research Translational Institute. “Researchers from around the world can bring their questions to the table. The potential of the study to be translated in many ways is really powerful.”
All of Us not only expands opportunity for medical breakthroughs, it also provides participants with health information they may not otherwise have received without extensive doctor visits or high-end technology. Researchers are hoping to soon share genetic results with participants. That information will include health-relevant information such as drugs that might cause adverse reactions or diseases that a person may have a higher chance of contracting, according to Katie Baca-Motes, program director for All of Us. Another upcoming project includes distributing Fitbits to program participants.
“These can help us collect data from people who might not otherwise buy a Fitbit,” Baca-Motes said. “They have become so advanced now, so we’re really excited about what we can learn from those. It’s a nice perk for the participants and it helps contribute data to the program.”
Researchers are already having success attaining the goal of massive participation. About 50 percent of the current participants are racial minorities, while about 82 percent are from groups that are traditionally under-represented in health research. Vogel said that includes people from rural areas, those with lower education levels and people from all genders and sexual orientation backgrounds.
“We’re making up for lost time and making sure that the groups reflect the U.S. as a whole,” Vogel said. “We want to make sure that this reflects everyone and that the discoveries we make are relevant to everyone. We’ve seen that in clinical trials. If certain groups are not included, that drug may not work for all people. We’re trying to create this large database so future studies can use the information.”
“Researchers believe the project can have both short- and long-term benefits,” said Baca-Motes. In the short term, the information gathered from research, medical records or genetic sequencing may help identify potential health problems. In addition, participants are working hand-in-hand with researchers as true partners in improving health outcomes.
“In the longer term, we believe we can learn more about medical breakthroughs,” Baca-Motes continued. “We also want to learn about what it takes to get people engaged in their health, participating in health research and ultimately engaged in healthier overall behavior.”
The COVID-19 pandemic is the first test of the power of a resource like All of Us. Vogel said researchers are looking at samples previously collected to see if any contain COVID-19 antibodies.
“We’re particularly trying to see if people had the antibodies before March,” she said. “This gives us a way to look at how the disease was spreading across the country. That work is ongoing. We also have a COVID participant experience survey where we are asking people how COVID has affected their lives. We’re trying to learn more about how the pandemic has affected people in multiple ways and on a long-term basis.”
All of Us wants to build a library of health information that represents everyone and close equity gaps in medical research. To achieve this, the research program is actively working to have one million participants contribute to groundbreaking work.
If you are interested in participating in All of Us research, visit www.joinallofus.org/la. If you have questions about the program, advisors are available from 6 a.m. to 9 p.m. Central time, excluding public holidays. To reach an advisor, call 844-842-2855, email firstname.lastname@example.org or start a live chat on the website.