Ohio State University: Reproductive Health Scholar and Bioethicist Aims to Revolutionize Data Collection and Research Capacity
Collaborations and team science are important values to Shameka Poetry Thomas, a global maternal and child health scholar in the Division of Bioethics in the College of Medicine at The Ohio State University. Not just collaborating with other researchers, she said, but patients as well.
“I say we conduct research ‘with,’ not ‘on,’” she said. “We conduct research with patients, not on patients.”
Thomas joined Ohio State after completing several years of postdoctoral sickle cell disease-related research with Black women in the United States and Ghana during fellowships with the National Institutes of Health and Harvard’s School of Public Health. She is now a tenure-track research instructor and provost’s fellow in bioethics, race and health equity.
Sickle cell disease (SCD), a genetic condition that affects the body’s red blood cells, giving them a sickle shape instead of the usual circular shape, affects populations of African descent at much higher rates. SCD not only is a debilitating condition, it can also exacerbate additional health problems such as strokes, eye issues, infections, chronic pain and leg ulcers.
Advancements in SCD treatment have led to options that are helping sickle cell patients live longer, expanding the possibilities of reproductive capacity among women and men. Thomas is specifically examining patient perceptions at this intersection of SCD and maternal-and-child health, such as delayed menstruation cycles among young women Pregnancy can also trigger and sickle cell symptoms, particularly intensifying pain episodes during labor and delivery.
“Imagine labor contractions without anesthesia or an epidural,” she said. “Patients in my research studies have confirmed how sickle cell pain is even worse.”
Medical care is often siloed, Thomas said, which can make the patient’s experience challenging. Practitioners tend to specialize in one field or another.
“But patients with genetic conditions don’t experience these things separately,” she said.
Earlier this spring, Thomas’ Sickle Cell Women and Girls (SWAG) Lab was awarded $500 from the university’s FREE Center, or the Center for Feminist Research, Education and Engagement. The funds are one of the center’s cluster research grants, which support interdisciplinary work across the campus.
“I think it’s always good to build across disciplines,” Thomas said. “These funding mechanisms show us how to do that effectively as an institution. When you put money behind it, you put power behind it. You said that this matters to our academic environment.”
Mary Thomas (no relation), a faculty member in Women’s, Gender & Sexuality Studies who serves on the FREE Center advisory board, lauds this research as an ideal project to highlight the benefits of combining a feminist commitment to alleviating suffering with a community-centered methodology.
“Black women’s pain is often tragically discounted in medical practice in the U.S., a discouraging factor in the quality of care they receive and a foundation of a patient’s loss of trust with a medical provider,” Mary Thomas said. “This research turns the head on the disregard of Black women’s experiences in health care, showing the power of inviting patients into the research process – not just as data points, but as experts on their own bodies and identities.”
Shameka Thomas aims to use the grant for a panel discussion that explores her data analysis methods. The majority of sickle cell patients are Black. In the United States, Black women are three times more likely to die from a pregnancy-related cause than white women. Now more than ever, accurately recording their lived experiences is crucial, she said.
Thomas hopes to transform the research process by being intentional in her own study designs.
“We invited patients to come code the data with us and analyze the transcripts,” she said. “We want to know if we’re capturing their voices correctly. We extract so much from patients, and we don’t invite them into the research process. [Having their participation] was phenomenal.”
Research like this, which incorporates patients and colleagues from other fields, is key to what Thomas and others call “wraparound” care – collaborative care that incorporates different fields to provide holistic treatment for a patient.
“A sickle cell patient can go to a clinic and get treatment, but are we understanding the social experience of that treatment?” she asked. “Are we understanding the social experience of that patient? We need to bring in medical anthropologists, genetic counselors, medical sociologists, bioethicists, hematologists, OBGYNs. Everyone needs to be involved. If we only treat one part of the patient, we’re failing the patient.”
Working across disciplines leads to better outcomes for patients and researchers. It also results in something else, she said.
“It creates joy for everyone involved,” she said. “You don’t hear the word ‘joy’ often in research. I get a lot of fulfillment from the work that I do. When our work is seen and valued, it brings joy.”