In recent months, a stark chasm in maternal mortality rates has gained widespread attention: In the US, Black women die from pregnancy and childbirth complications at three times the rate of White women.
But in fact, the landscape of maternal health in the United States has long been riddled with deep divides in resources, care, and outcomes, said organizer Lois McCloskey at “Bridging the Chasm between Pregnancy and Women’s Health over the Life Course,” an innovative national conference hosted at Boston University on July 16 and 17.
“When I think of a bridge across a chasm, I think of the ones I saw in rural Nepal,” said McCloskey, associate professor of community health sciences, who began her public health career in the Himalayan country. “They were narrow, terrifying, creaking, swinging bridges, bridges that made you think, ‘Who would build a bridge across that chasm? Who could?’ Those bridges took a village to build.”
To bridge the chasms in women’s health, organizers of the two-day conference used improvisation and storytelling to bring together 75 participants from diverse areas of expertise: women with lived experiences of complicated pregnancies, clinicians, researchers, health system innovators, policymakers, and private sector advocates.
McCloskey, who co-organized the conference with Judith Bernstein, professor of community health sciences, identified two of the main chasms to approach over the course of the conference. “The first chasm is the deep divide between our big investment in women when they are pregnant, for the sake of healthy babies, and our failure to invest in women after the baby is born,” she said. This has major consequences for a woman’s health, McCloskey said, directing participants’ particular attention to the fact that most women who have gestational diabetes are not tested or supported after giving birth, even though 60 percent go on to develop type 2 diabetes.
McCloskey also highlighted the chasm between those who receive care and those who deliver and design care, and the chasm between “what we know and what we do.” With this in mind, the two-day conference had two aims: to launch a cross-sector network with patients’ voices at the center, and to co-create a national agenda to close gaps in care, especially for the prevention of diabetes.
The first day of the conference focused on establishing relationships through improvisational theater and sharing stories from data and life experience, which would help inform the solutions developed on the second day.
Keynote speaker Phyllisa Deroze, a writer, professor of American literature at the United Arab Emirates University, and prominent diabetes patient advocate affiliated with DiabetesSisters, was the first to share her story.
Deroze was diagnosed with type 2 diabetes in 2012, two years before giving birth to her daughter. She said she knew about the risks associated with diabetes and pregnancy, but was excited for the experience of giving birth. A midwife friend made her an outfit to wear to the hospital, in blue and gold and evocative of the female pharaoh Hatshepsut, Deroze said. She wore part of that outfit as she told the story at the conference.
But the birth did not go the way she expected. At some point, Deroze said, she realized that she could not move either arm because of IVs in both. When she asked the OB/GYN why, the OB/GYN said, “’You’re pregnant with diabetes, so we can’t let you move,’” Deroze said. “I felt like I was being chained. Because I have diabetes I can’t have a normal experience? I had a certain idea of how I wanted this experience to be. I had an outfit made.” Deroze’s voice broke. “I was going to be a warrior.”
Instead, she said, after the birth she had an unexplained third-degree burn, other injuries that would require two surgeries, and a devastating sense that none of the providers had cared about her. “It took me two years to heal from the birthing experience,” she said.
Deroze’s story ended with the same sentence that began it: “I entered the hospital a warrior, but I left a wounded soldier.”
To prepare other patients at the conference to share their stories, and to bring all of the participants together on a deeper and more personal level, a team of actor–facilitators led breakout groups through a series of improvisation and storytelling exercises. Leading the effort was alumna Chase Crossno (SPH’15), assistant artistic director and assistant professor of medical education at the new Texas Christian University/University of North Texas Health Science Center (TCU UNTHSC) School of Medicine in Fort Worth, Texas.
“Improv has a way of bringing people to a generous and open place in a short amount of time by using activities that equal the playing field, challenge ego, and allow for humor,” Crossno said after the conference. “With so many players from different fields and a short amount of time, this was a way to build meaningful connections among participants to help us get to the root of the work quickly.”
The day ended with 14 participants sharing their stories with the entire gathering.
“There is nothing like storytelling from the heart—whether by researchers passionate about what they learn from data or patients passionate about their experience with illness and healthcare—that pulls people out of their protective shells or silos or constricted ways of seeing the world,” McCloskey said after the conference. “Stories engender empathy, and empathy generates creativity and out-of-the-box thinking. This conference was all about innovative solutions to old, stale problems.”
Reconvening on the second day, participants brainstormed those solutions on giant sheets of paper, then grouped the sheets into bundles, eventually coming up with 11 different themes. Participants self-selected into groups to work on whatever theme was most engaging to them, then picked two or three ideas from their bundle—those deemed most innovative and important to flesh out into actionable ideas.
Several groups came up with ideas related to the importance of preserving the record of women’s birth experiences and complications, whether by linking OB/GYN and primary care records, or by creating a culture where providers elicit patients’ birth experiences to inform care going forward. One group focused on policy mechanisms to assure that women would be covered by Medicaid beyond the routine 60 days postpartum; another proposed ways of reshaping maternal care to mirror “well child” care.
The conference was supported by the Patient-Centered Outcomes Research Institute (PCORI), the NIH Office of Research on Women’s Health, and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), and co-led by a stakeholder leadership council of the advocacy organizations DiabetesSisters, Black Women’s Health Imperative, and Patient-Centered Primary Care Collaborative, as well as academic partners. Support extends for another full year beyond the conference, to develop the agenda and begin putting some of these ideas into action.
To facilitate those next steps, the online “Bridging the Chasm” portal will be a place for conference participants and other stakeholders to team up and take action on the proposals that seem the most promising for research, policy, and community action.
“This wasn’t an endpoint,” McCloskey said after the conference. “It was a beginning.”