If one good thing has come out of 2020, it’s been the call to action to identify—and actively work to change—the many areas in our society where systemic inequality is impacting people’s ability to live a truly well life. One such area? Inequality in medical research.
“Medical research” might make you think of petri dishes and mice in a laboratory, but it’s actually a lot more relevant to your daily life than that—and the numbers are staggering. “Nearly 40 percent of Americans belong to a racial or ethnic minority group, yet clinical trials skew heavily white (up to 90 percent),” says Vincent Nelson, MD, vice president of medical affairs and interim chief medical officer at the Blue Cross Blue Shield Association.
To be specific, these trials have predominantly focused on white people who are straight and male, which has left out huge chunks of the population such as women, LGBTQ+ people, racial and ethnic minority groups, and people from low-income and/or rural communities, Dr. Nelson says.
“Nearly 40 percent of Americans belong to a racial or ethnic minority group, yet clinical trials skew heavily white (up to 90 percent).”
This lack of diversity is important because medical treatments may affect people of different groups differently, he explains, so in order to prescribe treatments and medications that will actually help, medical professionals need to have the right information.
“Diversifying medical research can help reduce health inequities by answering questions such as why Black women are suffering from higher maternal mortality rates or why stroke is more common among rural communities,” Dr. Nelson says. “In order to answer these questions, researchers and the medical community need to have access to data that is truly representative of our diverse country.”
So how do we fix this data diversity issue? The All of Us Research Program (which is managed by the National Institutes of Health) has been working on it since 2018, when All of Us set out to become the largest and most diverse research program ever. By partnering with volunteers who share their health info, All of Us is creating a massive data hub that gives researchers access to information that’s actually reflective of the U.S. population.
By the numbers, the program already has over 360,000 participants (more than 50 percent of whom are people of color, and more than 80 percent are from underrepresented groups) with a goal of reaching at least one million people and tracking health changes over a decade. And, more than 300 studies have already begun using this data to study cancer, heart disease, Alzheimer’s, mental health, and more.
The All of Us Research Program already has over 360,000 participants, 80 percent of whom are from underrepresented groups.
Here’s the catch: The program can’t make the monumental impact it’s hoping to without volunteers, but a historically justified lack of trust between traditionally underserved communities of color and the medical field is a barrier for turning things around.
“There is a lack of diversity with African Americans participating in medical research because there is significant mistrust in medical research based on the history of mistreatment, abuse, and deception with clinical programs within the African American community,” says Shana Davis, senior program director at Black Women’s Health Imperative. “In addition, based on various negative and historical experiences, black and brown communities tend to be more skeptical about sharing personal information for fear that it will be exploited in some way.”
To mend these bridges, All of Us is taking precautions to keeping all shared data safe and secure, and joining forces with groups like the Black Women’s Health Imperative, the National Alliance for Hispanic Health, the Asian Health Coalition, and more to spread the word on the importance of this movement—as well as to listen and learn how to be more culturally inclusive.
“If we [Black women] are not part of the study, our specific needs will not be assessed nor addressed,” Davis says. “Black women are disproportionately underrepresented in clinical research. Therefore, so are our needs. Black women must be educated on why participating in clinical research is critical to our long-term health. […] One day, this work will allow clinicians to tailor their day-to-day treatment plans precisely for me based on my genetics.”
If you or someone you know signs up, All of Us will ask for info (via surveys, electronic health records) on the factors that influence your health, like your lifestyle, activity levels, family health history, etc. You can also connect your fitness tracker (which you might qualify to receive for free if you don’t already have one!) and provide a DNA sample for further study, which could help you learn more about your genetic ancestry. The key is, you only have to share what you personally are comfortable divulging.
“If you decide to participate, you’ll be contributing to research that will help generations to come,” Davis says. “You could help ensure that people who share the same background, community, or orientation as you are represented and benefit from research.” And that’s a move toward equality you can definitely feel good about.
Sound like something you’d be into? Click here to learn more and sign up to participate. Plus, you might qualify to receive one of 10,000 Fitbit devices participants will be given this year.
Top photo: The All Of Us Research Program
Blue Cross Blue Shield Association is an association of of independent Blue Cross and Blue Shield companies and owner of the Blue Cross and Blue Shield service marks.