Partnering with the Community: Best Practices for Equitable Clinical Research.

This article was written by Karey M. Sutton, PhD.

Successful action against the maternal health crisis requires an all-hands approach. Our research perspective, published in Frontiers in Health Services, examines the importance of authentic patient engagement in research.

Despite progress, maternal health remains a crisis in the U.S.: Black patients who give birth are more than three times more likely than their white counterparts to die from causes related to pregnancy.

MedStar Health’s Safe Babies Safe Moms Program (SBSM) has demonstrated success in helping to turn the tide against maternal mortality in Washington, DC. This program’s foundational research was centered on the lived experiences of community members. 

Our research perspective article, published in Frontiers in Health Services, examines the importance of this patient-centered approach and provides a framework for enhancing maternal health throughout the childbirth process, from pre-pregnancy to postpartum.

As we expand SBSM across the MedStar Health system, we’re continuing to build authentic opportunities to engage with patients, families, organizations, and neighbors. While we are experts in research, only community members are experts in their own lives, their context, and the problems that must be addressed to advance community health.

Understanding racial disparities in maternal health.

The maternal health crisis includes unequally high numbers of deaths related to pregnancy (maternal mortality) and health conditions that affect birthing individuals (severe maternal morbidity).

The maternal mortality rate is higher in the U.S. than in any other developed nation, and the problem is worse for Black women. According to 2023 data from the Centers for Disease Control and Prevention, Black mothers die at a rate nearly three-and-a-half times higher than their White and Hispanic counterparts, and almost five times that of Asian American birthing individuals.

Severe maternal morbidity, including cardiovascular conditions, diabetes, bleeding, anemia, depression, and anxiety, follows similar trends. A retrospective study found Black birthing individuals have a 70% greater risk of these outcomes related to pregnancy than their White counterparts. 

Studies have shown that about 80% of pregnancy-related deaths and 90% of maternal morbidities can be prevented. To help understand more about how and why these disparities exist and stubbornly remain, it’s essential to consider both the numbers and the narratives behind Black mothers’ experiences.

Related reading: Study Published in NEJM Catalyst Finds Patients Cared for by MedStar Health’s Safe Babies Safe Moms Program Have Better Outcomes in Pregnancy, Delivery, and Postpartum

Making Black mothers’ stories part of research.

Quantitative studies, in which we gather and utilize data related to maternal health, are crucial to finding a solution; however, numbers can’t paint the whole picture. That’s why conducting qualitative research, in which we collect, analyze, and listen to patients’ stories, can help fill in the gaps, allowing us to identify changes that make an impact.

Our published perspective relays the story of Janine. She was pregnant with her first child and was admitted to the hospital because she had symptoms of high blood pressure. While hospitalized, Janine faced microaggressions including:

• Assumptions that she was a single mother, even though her husband, Charles, was there

• Unsolicited education about public assistance

• Dismissal of her requests for information about her medications

These experiences darkened what should have been a joyful time for Janine and Charles. It clouded their conversations about whether to have more children.

Quantitative surveys gather essential data, but predetermined questions can limit our ability to gain a deeper understanding. For example, if Janine were surveyed about her experience, she might respond “yes” when asked if she felt disrespected. In most surveys, there are no follow-up questions to help understand why she felt that way or what happened.

Qualitative research provides us with the opportunity to take a deep dive. More importantly, it opens an opportunity for patients from historically marginalized backgrounds to share their lived experiences unfiltered, building a sense of ownership and empowerment. At the same time, we work together to improve the system.

Related reading: Research: An Integrated Perinatal Diabetes Education and Management Program Improves Maternal Care.

A framework for amplifying community voices.

To harness the power of patient perspectives, we use a series of principles to amplify their voices and ensure their experiences are central to the solutions we develop. 

We view these principles as a series of interconnected gears that work together as a single unit. The central gear represents foundational values of equal distribution of power, trust, and equity. Five different but connected approaches surround it:

• Community-Based Participatory Research (CBPR): A collaborative research approach that equitably includes community members, researchers, and others in the study process.

• Culturally Responsive Equitable Evaluation (CREE): A framework that puts cultural considerations at the center of program evaluations, asking relevant questions about a community, its people, and their stories. 

• Mixed Methods Research: Combining both quantitative data and qualitative stories, mixed methods research can improve data accuracy by providing deeper insights and the context necessary to understand “why.”

• Policy and Systems Research: Health policy and systems research focuses on how healthcare systems function and interact, enabling us to improve these structures and processes

• Intersectional Analysis: Examining how overlapping social identities such as class, gender, and race come together to influence maternal health outcomes.