Editor's Note
This article is brought to you by Blue Cross and Blue Shield of Louisiana and the All of Us Research Program.
Tyra Banks grew up having a close relationship with her grandmother. They both did their best to lead a healthy lifestyle, manage their weight and incorporate fruits and vegetables into their diets. A few years ago, they became neighbors, living just two doors down from each other.
Within weeks, both Banks and her grandmother were diagnosed with tumors in their necks. Banks was not cancerous, but her grandmother learned she had breast cancer that had metastasized.
It really piqued my interest, Banks said. Why was her cancer so advanced and I didnt have it at all? It really took us by surprise because we were pretty healthy. I started wondering if the fact that we lived in the same environment had any impact because our other habits and lifestyles were very similar.
Banks grandmother would eventually pass away from cancer, prompting Banks to investigate health issues even more closely. Soon, she learned about the All of Us Research Program, a 10-year nationwide program with the goal to reach one million or more participants from backgrounds that have been historically underrepresented in biomedical research. The goal is to close the equity gaps in medical research, which in turn can lead to treatments that are better aligned with a persons background and biology.
I wanted to get involved with All of Us because I had learned that there were not a lot of answers about cancer treatment in women of color, Banks said. There wasnt a lot of information about the environments and lifestyles of women of color. It made me wonder what else we might be missing.
Geno McLaughlin, a Baton Rouge community advocate and engagement specialist for All of Us, said he grew up with an innate sense that Black people are often more predisposed to conditions like diabetes and high blood pressure, as well as higher infant mortality rates. With an extensive background in both community work and health care, McLaughlin said he knew people of color needed to participate in more medical research. But he also understood that many minorities carry a strong suspicion about such research because of prior unethical practices.
Theres a very real need to undo that suspicion because health outcomes wont change unless we participate in this process, McLaughlin said. In the past, people have not acknowledged that truth or spoken to those concerns. I feel like the people with All of Us are acknowledging that and a big part of our work is building that trust.
Banks and McLaughlin are working with the local community on a daily basis to share information about All of Us, and about the importance of diverse representation in health research. Lack of representation in research means that the outcomes of research and resulting medical treatments may not benefit everyone equally. Forty percent of the American population are people of color, but medical research participants are 80% to 90% white.
All of Us is the largest, most diverse health resource of its kind. With the efforts of community members like Banks and McLaughlin, along with national partners and other local community organizations, All of Us aims to increase representation in research of groups that have been left out of research in the past. There are currently over 360,000 All of Us participants, and more than 80% are people who have previously been underrepresented in research.
Banks also has been heavily involved with All of Us and serves as a community advocate with the National Institutes of Health. Part of that outreach includes speaking to people in the community about how medical and clinical research affects their lives.
McLaughlin said other efforts have included community panels, conversations with members of the faith community, and educational events. Since those types of large group activities are on hold because of the pandemic, McLaughlin said All of Us is now hosting regular virtual conversations on topics like diabetes, HIV/AIDS, cancer and more.
We try to choose timely topics that are relatable, he said. Its also a way to tie in the All of Us program and explain how participation can help deliver precision medicine.
Community advocate Geno McLaughlin speaks to a local citizen about health research at an event before the COVID-19 pandemic.
Banks said shes also talked with community members about how their participation in All of Us can help break repetitive cycles of poor health outcomes. She noted that if medical professionals dont have information on how people of color are affected by certain treatments, they cant prescribe treatments that might be more beneficial, thus creating an endless loop of poor health outcomes.
My hope is that the new discoveries will provide our doctors, researchers and the pharmaceutical industry with more knowledge, she said. I hope it helps them better understand how to prevent and treat chronic diseases. This is about precision medicine. Everyone who needs glasses gets a different prescription. Imagine if we could do that with cancer treatment.
McLaughlin said he hopes the All of Us research will not only mean better health outcomes, but help researchers and people in the community better understand the relationships among health, housing, education, transportation and more.
All of these things play a part in a persons health, he said. All of Us is a way to connect those dots, if people are being honest and sharing information in a way in which we can learn from each other. All of these things are connected and this is a way to study all of those factors.
If you are interested in participating inAll of Usresearch, visitwww.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, emailhelp@joinallofus.orgor start a live chat on the website.
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How BR community members are helping close the gap on medical research among minorities - The Advocate
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