Researchers Seek Reproductive Justice for Black Women
“The most disrespected person in America is the Black woman.
The most unprotected person in America is the Black woman.
The most neglected person in America is the Black woman.” —Malcolm X
Black mothers die in hospitals at nearly four times the rate of White mothers — an appalling disparity that has persisted for decades despite state and national quality improvement initiatives, clinical safety innovations, and technological advances. This disparity persists regardless of patient income, insurance, education, comorbid conditions, or prenatal care. The fact that many clinicians, decisionmakers, and policymakers continue to believe this excess incidence of death is the result of something inherently wrong with Black women is a symptom of America’s entrenched obstetric racism.
As anthropologist Dána-Ain Davis, PhD, explains in her book Reproductive Injustice: Racism, Pregnancy, and Premature Birth, obstetric racism takes many forms. There is the “medical abuse” form of obstetric racism dating back to 19th century physician J. Marion Sims, whose experimentation on enslaved Black women without anesthesia earned him the moniker “the father of modern gynecology.” The “diagnostic lapses” form arises from de-emphasizing or ignoring patients’ symptoms, as seen in the story of Kira Johnson, who bled to death after what was supposed to be a routine cesarean section. The “ceremonies of degradation” form made Johnson’s Black husband Charles hesitate to speak up forcefully in his advocacy for her out of fear the police would be called.
Traditional interventions have focused on the victims of racism, with the goal of trying to teach patients to speak up. In contrast, Karen Scott, MD, MPH — a community-based obstetrician/gynecologist for nearly 20 years and a self-proclaimed “reproductive justice avenger” — is working to disrupt birth inequities with the SACRED (examining Safety, Autonomy, Communication, Racism, Empathy, and Dignity) Birth Study. She is applying rigorous research methodology to Davis’s obstetric racism framework in order to put the onus of behavior change on providers and hospital systems. To that end, she is developing a quality improvement tool — the Patient-Reported Experience Measure of OBstetric racism, or PREM-OB Scale. The aim of this work is to capture patient-reported experiences of obstetric racism among Black mothers and birthing people* who seek help or health care in hospital settings during labor, birth, and postpartum.
A Vision for Concrete Action
Scott’s vision is that by identifying areas for concrete action, hospitals, researchers, and policymakers will be able to examine associations between overall birth experience, patient experiences of obstetric racism, and clinical data to improve policy and practice. The project is housed at UCSF and supported by CHCF, the Grove Foundation, and the Tara Health Foundation.
This work is imperative because the United States is centered on Whiteness, with all else assumed by the medical establishment to be deviations from that “normal” — and that includes how only all-White clinician or scientist teams have historically been considered capable of conducting rigorous research that drives innovation. That’s why Scott chose to develop the PREM-OB Scale exclusively “for, by, and with” Black mothers, birthing people, women community leaders, and women scholars. Reliance on White scholars reinforces assumptions that Black people are inferior and has consistently resulted in Black people being left behind, Scott says. Her focus is anti-Black racism in obstetrics where, according to Scott, “No White woman has hesitated to ask for pain meds to avoid being labeled a drug seeker. No White woman has told her husband to go change his clothes to appear as less of a threat. And no White woman has been asked how many baby daddies she has.” Because these experiences have historically been reserved for Black women, the Black community must be central to the work.
Providers can learn how to listen, how to respond, and how to diagnose in order for Black women to receive the same level of care and respect afforded other birthing women.
Over the last two years, Scott and her team have conducted extensive focus groups and individual interviews, chronicling narratives to characterize Black birthing peoples’ specific interactions with the health care system from onset of labor to hospital discharge. These narratives have helped to identify the SACRED themes to describe and measure obstetric racism, and they informed an iterative process involving 62 Black mothers and birthing people and 16 Black women scholars in sexual, reproductive, and perinatal health. This team reviewed and revised hundreds of existing and new survey questions and created seven independent and novel measuring systems that have never been tested in this unique format.
Finally, Scott has met regularly with SACRED Birth Community Accountability Partners to create a Community-Driven Quality Improvement (QI) Prioritization Protocol. The protocol is a set of principles and practices to help Black women community leaders in reproductive and perinatal health to generate, rank, and prioritize sociocultural QI topics for each theme on the PREM-OB Scale. These partners represent 14 community-based organizations (CBOs) that are led by or work for Black women.
Some may wonder how narratives from Black mothers who left the hospital alive with a newborn can teach hospitals how to save Black birthing lives. Leaving the hospital alive is not the only outcome that matters. In the words of one SACRED study participant whose vulvar laceration had to be repaired, “Though you put me back together, I still don’t feel whole.”
Ultimately, the study will give patients, plans, hospitals, and funders a report card of hospital-level data with a PREM-OB Scale score, both overall and within individual themes. In this way, providers can learn how to listen, how to respond, and how to diagnose in order for Black women to receive the same level of care and respect afforded other birthing women.
An Essential Activity in Health Care Settings
Listening to Black mothers in the health care setting should not be thought of as something “nice to have,” like a one-time implicit bias training but rather as a “must have.” A 2018 issue brief on this topic (PDF) underscores this point. “Listening provides information critical to identifying serious complications, like hemorrhage, infection, or high blood pressure, before they spin out of control,” said Stephanie Teleki, PhD, CHCF’s director of learning and impact. “We know that right now Black women are the least listened to in our health care system, and it is costing them their lives in some cases.” Had providers listened to Kira Johnson and Shalon Irving, who died from complications of high blood pressure after being sent home twice in the weeks following her daughter’s birth, they might be alive to mother their babies today.
In October, Scott and team will begin testing the PREM-OB Scale among Black mothers and birthing people over age 18 who had a live birth in a US hospital in 2020. Those meeting these criteria can volunteer to participate, and the study team is actively seeking hospital partners to help with recruitment. Completion of the study is anticipated by March 2021 and the SACRED Birth Model, including the validated PREM-OB Scale and the Community-Driven QI Prioritization Protocol, will be available for implementation nationwide.
Professional obstetrics and gynecology organizations have only last month recognized (PDF) that racism is a public health and women’s health crisis. So it remains to be seen whether hospitals, clinicians, and staff will be able to move past the reflex to be defensive or shut down whenever the word “racism” is mentioned and to actually use the PREM-OB Scale to demonstrate a belief that Black mothers and birthing people have SACRED births too. Black lives depend upon it.
* The use of the term “birthing people” recognizes that not all people who become pregnant and give birth identify as a woman or a mother.