Cancer Group Launches Study of Black Women

The American Cancer Society hopes to gain insights from 100,000 respondents to better understand racial disparities around diagnoses and treatment.

The American Cancer Society has launched a wide-scale national study to better understand trends around Black women and their cancer risks.

VOICES of Black Women, announced by ACS on May 7, intends to enroll 100,000 women across 20 states and Washington, D.C., in a 30-year survey. Participants will receive regular questionnaires about their experiences and lifestyle, which ACS hopes will help reveal insights about inequities around diagnoses and treatments of cancer in Black women. 

Research shows that Black women under the age of 50 are 40 percent more likely to die of breast cancer than white women, said Dr. Alpa V. Patel, MPH, SVP of Population Science at ACS and co-principal investigator of the VOICES of Black Women study. The idea for the study was developed around six years ago, Patel said, as researchers became more alert to those disparities in cancer rates. After the pandemic, efforts around the initiative accelerated. “That really brought to even greater light the health inequities experienced in the Black and brown community,” she said. “That got us to the point where we said, ‘OK, we can’t wait.’”

Research shows that Black women under the age of 50 are 40 percent more likely to die of breast cancer than white women.

ACS is directly appealing to potential survey participants through a dedicated website, but is also using its network of corporate partners and connections with healthcare organizations to spread the word and meet its goal of gathering 100,000 participants. The program is administered by the association’s Department of Population Science—which Patel said has staffed up to support the effort—in consultation with a scientific advisory board composed of eight Black women specializing in cancer and public health. All board members will serve three-year terms. 

Participants in the survey must be cancer-free, a requirement that Patel says will help ACS access more accurate data about the lifestyles of those who do eventually receive a cancer diagnosis. And though the survey is looking at cancer specifically, ACS also intends to look at a variety of health factors. “We did include some members of the scientific advisory board who are not specifically cancer-focused, because this type of study will really have a far-reaching impact in terms of understanding the health of Black women more broadly,” Patel said.

The survey plans to include participants in Washington, D.C., and the 20 U.S. states which have the largest proportions Black women. To test the feasibility of the study, last fall ACS ran a pilot test with around 400 participants in Atlanta and Hampton Roads, Va., to ensure that its questions were clear. “We wanted to understand if there were concerns that came up with the language in the consent forms or any of the marketing materials, and give people the opportunity to provide feedback on the acceptability of the study design.”

Study participants will be asked to take part for 30 years, receiving regular follow-up questions that will remain consistent during the survey’s run. As findings around cancer change, Patel said, some questions may change as well. Regardless, ACS plans to regularly report its findings. “As soon as we have a sizable number of women enrolled, we can start to do cross-sectional studies—what we’ve learned about how where you live or access to different things correlates to different behaviors,” she said. “On some things, we can begin publishing almost immediately.” 

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