How the American Cancer Society hopes to improve outcomes for Black women

Simply put, Black women are more likely to die of cancer.

Dr. Alpa Patel, senior vice president of population science at the American Cancer Society, is leading an effort to enroll more Black women in cancer research.

When it comes to breast cancer, the mortality rate of Black women is 41% higher than white women, even though Black women are slightly less likely to develop breast cancer, according to data from the American Cancer Society. In most cancers, Black women have the highest death rate of any racial group in America, and they have the shortest period of survival, the cancer society says.

Aiming to address those disparities, the American Cancer Society has launched an initiative to expand the volume of cancer research in Black women. This month, the organization announced the launch of the VOICES of Black Women study, and the cancer society is hoping to enroll 100,000 Black women.

Dr. Alpa Patel, one of the lead researchers on the project, tells Chief Healthcare Executive®, “We want to lift up the voices of the women who are giving of their time and information to the study.”

“We want to be able to learn about the experiences that they've gone through, and how those factors contribute to the development, and ultimately surviving, cancer and other health outcomes,” she says.

In a recent interview, Patel discussed the effort, why it’s so important, and how the cancer society aims to engage more Black women in research.

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Anxious for answers

Black women have well-documented inequities in cancer outcomes, says Patel, senior vice president of population science at the American Cancer Society.

“Black women have, along with many marginalized communities, been underrepresented in research in the past,” Patel says. “So for us to be able to intentionally understand why these inequities exist, we really need to build a sufficiently large population of Black women.”

Researchers want to explore the medical and family histories of Black women, along with factors such as their environment, lifestyle, along with racism and bias.

By examining all of those factors, “We can understand how all of these different factors drive these cancer inequities. It's only then that we'll be able to find effective ways to intervene and change that in the future.”

The American Cancer Society is looking to enroll women between the ages of 25 and 55 years of age. The researchers are seeking participants in 20 states and Washington, D.C., where the vast majority of Black American women live.

Part of the urgency stems from the fact that more younger women are being diagnosed with cancer. Black women diagnosed with breast cancer under the age of 50 are twice as likely to die than white women, she notes.

“The disproportionate burden of poor outcomes is really among those younger women, and that's what we wanted to be able to study,” she says.

Realistically, Patel says she expects it will take three years to enroll 100,000 participants.

“I always say if we get there sooner, that's great because we can get to that first wave of answers even sooner,” she says. “So the faster we enroll, the faster we start being able to generate some really important findings from the study.”

Some disparities in outcomes among Black women are related to a lack of access to care. But Patel also points to the different ways cancer develops in Black women.

Black women are more likely to develop triple negative breast cancer. Roughly one in five Black women with breast cancer develop triple negative breast cancer, compared to one in every 10 women in most other racial and ethnic groups.

“So we're seeing cancer present in more aggressive ways,” Patel says. “And for those, we know that we don't have as many targeted treatment options. There are just fewer options for treatment overall. So that contributes to that inequity.”

Even among Black women that are more affluent, there are disparities in outcomes, Patel notes.

“We actually see slightly greater disparities at higher income levels,” she says. “So at lower income levels, across most racial ethnic groups, you're seeing that there is a significant access to quality care issue, that if we can intervene and correct that, and create equal access to high-quality cancer care, that will be beneficial across most racial ethnic populations.”

But among those Black women with higher incomes, the inequalities in outcomes persist, and Patel says that underscores the need for greater representation of Black women in cancer research.

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‘Doing this with Black women’

The American Cancer Society is employing a host of different approaches to enlist Black women into cancer research.

Importantly, Patel points to the diversity of the researchers involved with the effort.

“Most of our core research team related to ‘Voices of Black Women' are Black and Brown women,” she says. “And our entire scientific advisory board for the study is made up of Black female scientists who are experts in the space of health equity, and/or cancer as it relates to Black women.”

Some Black Americans don’t hold the medical establishment in the highest regard, due to past mistreatment. Patel acknowledges that is a hurdle, and she says researchers are acknowledging that mistrust and are working to build trust with participants.

Researchers are explaining the consent forms and will talk with participants about why they are asking for certain types of information.

“I often say that we're not doing this for Black women,” Patel says. “We're doing this with Black women. So these 100,000 women are really going on this decades-long journey with us to help us learn how to improve the health of future generations of Black women.”

Researchers are also striving to protect private patient information. Patel says all patient health data is being de-identified.

American Cancer Society Researchers will work with community leaders and faith-based partners to reach out to Black women. The effort will involve working with businesses that have a large employee base. Researchers are also working to make it easier for women to participate in research.

“There are many studies that have documented that Black women in particular, are very willing to engage in research, but there are those physical barriers like transportation time, childcare …. so many other factors that can make that difficult or impossible to participate,” Patel says.

In the short term, Patel says she’s looking forward to publishing studies about the experiences of Black women.

As time progresses, researchers hope to see targets for intervention that can lead to better outcomes for Black women with cancer.

“Long term, I think about the next generation and how different health can look for the next generation of Black girls that are just being born today … what cancer could mean for them, versus what it's meant for their mothers or grandmothers.”

To learn more about the study, visit: voices.cancer.org.