National Institutes of Health Advocates for Diversity In Research

Diagnosing a mystery illness together

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It isn’t a secret that African Americans continue to chart high rates of chronic diseases.

According the to CDC, heart disease and cancer are among the leading causes of death in the Black community, while obesity and hypertension follow suit with a severe impact on overall quality of life. There are many schools of thought on how to combat this dilemma. And now the National Institutes of Health (NIH) brings change to people of color in one particularly meaningful way: focusing on diversity and representing those who have previously been underrepresented via the All of Us Research Campaign.

All of Us invites people from diverse backgrounds to join and share their health information. The program then opens up the information to authorized medical researchers, creating opportunities to develop research test groups that include varied participants worldwide.

Historically, many health studies have been conducted using mostly men as primary participants. Unfortunately, this limits information gathering on how medical interventions can help other demographics. The premise is simple. The campaign looks to collect data from all groups of people so researchers can actively study why certain people are affected differently by different health conditions, and find personalized treatments to greatly improve health outcomes.

“The concept, what it does, what it means to our community makes sense in the big picture,” says Jennifer Jones, All of Us program lead for Black Greek Letter Consortium, which is working to spread the word and find participants for the initiative via panels, events and more. “We need to be open to participation because it’s going to give researchers to the tools to create solutions for the issues that plague us, like hypertension and lupus. We have to be part of the research to find the answers.”

But it’s not the easiest request. Of course, there are people in the community who are reluctant to sign on due to the history of Black people being exploited and victimized by health professionals. “That’s why we offer informed consent,” says Jones. “You fully understand everything, from beginning to end—and you get to decide how far you want to go. You decide when you’re done. It’s a partnership.

The program then opens up the information to authorized medical researchers, creating opportunities to develop research test groups that include varied participants worldwide.

Indeed All of Us is also unique in that the research isn’t for the NIH; instead it’s a resource for other organizations conducting research that are looking to have larger, more diverse, data pools. Once signing on participants are able to fill out surveys about their health, habits and lifestyle; next, if willing, they can share their electronic health record, connect a wearable device like a Fitbit, and samples like saliva and blood. Each step is optional, and participants are able to pick and choose what they want to share. But all of the different types of information come together to help connect the dots between the many factors, beyond genetics, that shape health. The more information researchers have, the more likely they are to uncover important findings that can help experts understand how to prevent and treat diseases.

There is another big perk. You have access to your information from the start.

“I can also receive my data,” adds Jones, who notes that having information gathered from her blood work helped her have more informed discussions with her doctors as she battled her own health issues. “The program opened my eyes and helped me understand my medical history.”

All of Us is an ongoing initiative and the NIH and BGLC hope it’s part of a bigger change for the Black community. To learn more, visit joinallofus.org/newsone.

“We know there are health disparities,” says Jones. “We must educate our community, help the medical field and help ourselves.”

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