At the 10th anniversary celebration of the Maternal Health Task Force, The Global Maternal Health Symposium, 10 Maternal Health Visionary awards were presented. The recipients were honored for the impact, innovation, inspiration, leadership, and future vision they have provided to the field of Maternal Health. This blog series highlights the work of these maternal health visionaries.
Maternal Health Visionary Spotlight: Dr. Joia Crear-Perry, National Birth Equity Collaborative founder and president calls on us to value every woman to achieve maternal health equity.
Dr. Joia Crear-Perry was led to a career fighting to eliminate racial disparities in maternal and infant health through her own experiences as a Black mother. Pregnant with her first daughter and entering medical school, she struggled to find a female Ob/Gyn who was taking patients. While she had always thought she would be an ophthalmologist like her father, she found she loved spending time with mothers and infants. The premature birth of her second child opened her eyes to a glaring error in the way race and ethnicity was thought of in the medical field. As she went into early labor, she knew the risk factors for preterm birth, but the only one that was included in her medical textbook that fit her situation was being Black. Yet, she also knew there was no true genetic basis for race. So how could race be a risk factor?
That question led her not only to pursue a career in Obstetrics and Gynecology, but also to become a champion of the idea that it is not race, but racism and bias that increase the risk of poor maternal health outcomes, including mortality. Dr. Crear-Perry explains:
“Although in Atlanta white infant mortality is 6 per 1,000 and Black infant mortality is 13 per 1,000, white women are still doing poorly. In Portland, the white infant mortality is 1 per 1,000. We’re not looking for the genetic differences between white women in Portland and white women in Atlanta. We know [in Portland] there is much more midwifery, much better infrastructure, Medicaid expansion, better jobs, and better educational attainment. People use racist ideas to harm all of us.”
Eventually, with support from the W.K. Kellogg Foundation, Dr. Crear-Perry founded the National Birth Equity Collaborative, a non-governmental organization dedicated to eliminating racial disparities in birth outcomes. The National Birth Equity Collaborative (NBEC) was built to both bridge the gaps between communities, hospitals, and governmental systems and to focus on the social determinants of health driven by racism, classism and gender oppression.
Determined to better understand what causes racial disparities in infant mortality, the NBEC interviewed Black women who had experienced an infant death on the circumstances surrounding the loss and the women’s lives. Those stories were combined with focused research on over 50 social determinants of health to create the Birth Equity Index, exploring the impact of indicators such as population health and socioeconomic conditions on Black infant mortality. Of the 50 different social determinants of health inequities that they were able to identify quantitative data sets for, ten of them had a positive predictive value for Black Infant Mortality. Dr. Crear-Perry and her team found that the association between the index and Black infant mortality was stronger than any single indicator and that Black infant mortality rates were on average 1.24 times higher in areas with worse conditions.
Just six months after NBEC was founded, a meeting was convened at SisterSong with the Center for Reproductive Rights about an Amnesty International report stating that in the United States, Black women die in childbirth at four times the rate of white women. It was a wake-up call for the U.S. and for the NBEC, which Dr. Crear Perry decided should focus on Black maternal mortality as well as infant mortality. This expansion of focus has led the NEBC to work on to projects with state maternal mortality review committees to include social determinants of health in the review process. Other notable projects include a collaboration with the Society for Maternal-Fetal Medicine and the American College of Obstetricians and Gynecologists (ACOG) to create training on implicit bias and racism for medical students, residents, and practicing physicians, and a collaboration with the Association of Women’s Health, Obstetric, and Neonatal Nurses to educate Black communities on the warning signs of postpartum complications.
NBEC is also working alongside ACOG and the California Maternal Quality Care Collaborative to create a model for respectful care during childbirth in the United States. Disrespect and abuse during childbirth can take many forms, including physical and sexual assault as well as failure to respond to medical emergencies or forcing unwanted procedures. Disrespectful care and abuse are known to contribute to maternal mortality and morbidity, and the data show that this abuse is more likely to happen to women of color. Yet until recently, it was not considered an issue in the developed world and the international work on the definition of respectful care, guidelines for ensuring respectful care, or provider-level accountability for disrespect have not been adopted in the United States. True to its mission of family-centered collaboration, NBEC is going back to the community, interviewing women on their experience to inform the creation of a patient-reported experience metric. At the same time, they and their partners are working to turn those stories into accountability by locating indicators that can be used to hold hospitals and healthcare providers to a standard of respect. Someday Dr. Crear-Perry hopes that we can achieve a minimum standard of respectful care in which every provider will:
“be able to sit with the patient and see them as fully valuable, see them as someone that is worthy of their entire attention and who has the capacity themselves to know their body the best…knowing when they speak they might not have medical knowledge, but the patient has knowledge of themselves.”
Respectful care requires a culture shift as well in how we value women, especially Black women in the US and across the globe. To illustrate her point, Dr. Crear Perry points to the fact that there has been no official maternal mortality ratio reported in the United States since 2007. “We know exactly how many infants die every year, but we don’t count moms,” she says. “You don’t count what you don’t value.”
The path forward to achieve equitable maternal health care starts with valuing moms and valuing them by investing in upstream solutions. Dr. Crear Perry has a list: paid leave, free childcare, access to adequate transportation. It all boils down to one thing – countries with better outcomes all have a better social safety net than the United States. “We need to invest in and value everyone despite income, race, religion, and education and to believe that everyone should have what they need to live a full and robust life,” Dr. Crear-Perry concludes. It will be up to all of us to live out her vision.
For more information on measuring maternal mortality in the United States, see our recent blog post “Redefining the Challenge of Maternal Mortality in Contemporary MCH: A seminar with Dr. Gene Declercq.”