An October 2023 article in Boston University’s (BU) publication, The Brink, features pioneering BU research that took an in-depth look at the Black Women’s Health Study (BWHS). This is the largest US study focused solely on black women’s health issues.
Established at the BU Slone Epidemiology Center in the mid-1990s, BWHS seeks to understand and help resolve underlying reasons for poor and good health among black women, focusing on addressing stubborn healthcare inequities and racial disparities.
Black women have a higher likelihood than other ethnic and racial groups of death from hypertension, heart disease, lupus, stroke, and several forms of cancer. Their likelihood of developing uncontrolled blood pressure and being diagnosed with diabetes over age 55 is more than twice that of white women. At the same time, they must surmount issues such as greater medical debt, lack of health insurance, extended travel times to clinics, and lack of access to affordable care.
One of the 59,000 BWHS participants is Charlene Coyne, a biopharmaceutical executive based in New York. Her impetus in joining was her mother, Donna, who first experienced a heart attack and stroke while in her 30s and battled severe hypertension until passing away from complications of the disease at age 43.
Coyne witnessed her mom’s physical deterioration and was aware of the toxicity of the drugs she took, yet stood by helplessly when her physician refused to change the prescription regimen. Having seen her mom suffer unnecessarily, she wanted to be an agent of change in enabling black women to receive better, more personalized, and more medically appropriate care.
BU School of Public Health professor Lynn Rosenberg, an epidemiologist, helped launch BWHS and coordinated a large cohort of participants by calling Essence magazine subscribers. From age 21 to 69 and an average age of 38, participants hailed from across the country. Some 97 percent have completed at least high school, and more than 50 percent have contributed blood, saliva, or cancer tissue samples in the name of genetic research.
Participants also fill out confidential questionnaires covering health issues, lifestyle, and demographics every few years. These surveys sound out participants on major societal issues, such as the impact of the COVID-19 pandemic. They are particularly valuable in how they track women as they age and face different life decisions and health and institutional challenges.
The program has been an unmitigated success, as it delivers insights that allow black women to make informed health choices, with stories and findings disseminated to the community via webinars and newsletters. At the same time, data-driven results provide policymakers and healthcare providers with ammunition for combatting persistent racial inequities. Since its inception, BWHS has consistently achieved funding renewals through the National Institutes of Health every five years.
The BWHS output includes more than 350 published papers involving synergies with other cohort studies, such as the Framingham Heart Study at BU. With a major focus on breast cancer, other areas of significant research include autoimmune diseases, obesity, diabetes, and insomnia. Several of these papers represent the first-ever such studies involving large populations of black women. As such, they represent a significant step forward in overcoming exclusion from clinical research, which historically focused on white men.
Among the significant research that has come out of the Black Women’s Health Study is a 2005 paper, “Obesity and the Risk of Type 2 Diabetes in U.S. Black Women” (American Journal of Epidemiology). Another major study is “Parity, lactation, and breast cancer subtypes in African American women” (Journal of the National Cancer Institute, 2014). In 2021, BWHS-affiliated researchers published “Health Equity Among Black Women in the United States” (Journal of Women’s Health).
Examining specific physical and mental health outcomes, including those associated with maternal morbidity and mortality, the authors found that a combination of greater social and economic equity was critical in improving outcomes for black women. With regards to the pandemic, BWHS-informed research has suggested that vitamin D insufficiency among black women is a major factor in increasing risks of mortality and the development of severe COVID-19 infection.
