NIH Research Program Hopes to Close the Health Gap
The health statistics are real: African Americans die more often of heart disease, stroke, cancer, diabetes and many other chronic health conditions than their White counterparts. But the organizers of a new research program have a unique approach to change that narrative.
“Despite the best intentions of medical providers and researchers, health care in the United States largely employs a one-size-fits-all system,” says Dr. Dara Richardson-Heron, chief engagement officer of the All of Us Research Program, which hopes to enroll and collect health data from one million people in one of largest studies of its kind.
“This means treatments and cures have largely been developed using a pool of research participants that do not reflect the true diversity of this nation.”
To date, 200,000 participants have enrolled since the May 2018 launch.
According to Richardson-Heron, African Americans comprise 13.2 percent of the population but just 5 percent of clinical trial participants. Conversely, 67 percent of Americans are white but make up 83 percent of clinical trial participation.
A longstanding mistrust of the medical industry by African Americans may be partly to blame. Supporters of the program hope the diversity goal of the program and outreach to underrepresented populations will change minds.
“It’s an opportunity to finally get more information on people of color,” says Dr. Michael Minor, National Director of the National Baptist Convention USA, Inc. H.O.P.E. Initiative. Minor and his denomination were asked to conduct outreach in the African-American community for All of Us, and now deliver presentations around the country and promote the message heavily on social media.
“This is no one-trick pony. We will collect information and collaborate with researchers in the area. If we can work with people that are passionate, we can do some good.”
Think of the program also as a national resource, feeding data to other studies that cover a wide range of diseases and health conditions. The data collected could lead to the development of new medical treatments and, in a move toward precision medicine, tailor recommendations that are unique to the individual.
“Precision medicine is health care that takes into consideration things like race, gender, socioeconomic status, where patients live and what they do for a living to create a more holistic picture of a patient’s health,” Richardson-Heron says.
Enrolling is simple. Participants sign up and fill out an anonymous survey through the website portal. Depending on the information provided, members may be asked to provide a blood and urine sample at a nearby location. Members may also be solicited to participate in clinical trials but aren’t obligated to. Participants have access to their health information and can update it or withdraw from the program at any time.
Because of the sheer volume of the study, it may take time for members to receive any information regarding their data. Minor asks participants to be patient so that researchers can take necessary care of the data.
“You can be a part of something that will make a difference,” he says. “We believe the diversity of the people will help get to the bottom of some of the diseases that disproportionately affect us.”
To learn more about the All of Us Research Program, go to www.joinallofus.org.
— Stacy Julien
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