Better Data Needed to Prevent Maternal and Infant Deaths
By Shelby Crosier
The United States consistently has the highest infant and maternal mortality rates when compared to other high-income countries. Both rates have been getting worse in recent years, and Georgia is no exception. The state has one of the worst maternal mortality rates in the country at 33.9 per 100,000 live births, and one of the most rapidly increasing infant mortality rates at 6.3 per 1,000 live births. For Black women and babies, these numbers are even higher.
A major barrier to improving maternal and infant health, is limited available data. Data on pregnancy and birth outcomes is often incomplete, especially in cases of maternal or fetal deaths. Information about patient experiences with maternal health care or the efficacy of upstream policy interventions is also limited.
Researchers across Rollins have been working to fight the maternal mortality crisis in Georgia, champion stillbirth legislation, and improve data collection efforts nationwide.
Stillbirth Surveillance with Vital Records
Historically, most of the available maternal and infant mortality data has come from vital records such as birth and death certificates. These records form the basis of two data aggregation systems from the Centers for Disease Control and Prevention (CDC): the National Vital Statistics System, which houses infant mortality numbers; and the Pregnancy Mortality Surveillance System, which contains data about pregnancy-related deaths. Vital records information, while helpful, is not without its flaws, especially when aggregated at a nationwide level.
“The legal authority for vital registration lies with the states,” says Lauren Christiansen-Lindquist, PhD, research assistant professor of epidemiology. “And so, CDC’s National Center for Health Statistics provides guidance for the states about how they recommend they collect data, and then it’s up to the states to decide if they are going to adopt CDC’s recommendations or do it their own way.”
Christiansen-Lindquist’s research centers on stillbirth, a birth outcome that is especially affected by the lack of consistent quality in vital records data. Stillbirth affects about 1 in 170 pregnancies per year in the U.S. This rate has plateaued in recent years and, like other outcomes, is lagging in the U.S. in comparison to other high-income countries.
One contributing factor could be gaps in understanding caused by missing information from fetal death certificates. For example, between 25% and 50% of stillbirths have no underlying cause reported, because while the fetal death certificate must be filed within a few days of the delivery, autopsy results can take months to come back. This makes it difficult to track trends in the circumstances surrounding stillbirths.
“Although there’s a process to amend a fetal death certificate, it is rarely done,” says Christiansen-Lindquist. “We need to think through how we can streamline the extraction of information from fetal autopsies and get it into the vital record, so that we can start seeing what the patterns are.”
Beyond cause of death, other vital data is often left out as well. One example is information about demographics, behaviors, and history that need to be reported by the mother herself. While staff at the hospital should be collecting this information, it often does not happen.
“There’s a hesitancy to interview the mother of a baby who was stillborn,” says Carol Hogue, PhD, professor emerita of epidemiology and maternal and child health. “A lot of information is missing because people don’t really feel comfortable, or even know that they’re supposed to address those questions.”
It is vital, according to Hogue, to make sure that hospital staff are trained on what data needs to be collected from mothers, how to do so with sensitivity, and why it is so important. This way, information is coming from the source, and complete records can be sent on to the local and state health departments.
“Most moms are more than willing to talk,” says Hogue. “They don’t want anyone else to have this experience, so they want to help.”
Higher quality vital records data—whether due to a streamlined fetal autopsy reporting process, improved interview and data collection protocols in hospitals, or more consistency in reporting nationwide—would be an essential piece of the stillbirth puzzle.
“With better data, we can really, truly understand what the patterns are, and we can get one step closer to understanding the distribution of the causes of stillbirth,” says Christiansen-Lindquist.
Health Care Quality Data to Improve Maternal Outcomes
Beyond just vital records, other commonly used sources of maternal and child health data include hospital-reported outcome information, insurance claims data, and national surveys such as the Pregnancy Risk Assessment Monitoring System (PRAMS). While these sources are readily available for research use and provide data that is essential to public health research, it is equally important to look at maternal health through a more personal, qualitative lens.
According to Whitney Rice, DrPH, assistant professor of behavioral, social, and health education sciences, understanding individuals’ experiences with maternal health care is a vital component of improving health outcomes.
“I think there are real opportunities in our ability to understand what people’s experiences are in receiving care that meets preferences and that’s respectful,” says Rice. “We could also be looking at things like whether preferences were equitably met.”
Respectful and equitable health care is recognized as a vital factor in reducing both maternal mortality and maternal morbidity, or negative health conditions brought on by pregnancy or childbirth. This is in large part due to the importance of shared decision making between health care providers and patients throughout the perinatal period.
“If we’re finding that certain circumstances, provider types, or types of interactions are the ones that facilitate better health outcomes, then we can work to figure out how to optimize and increase the access to those interactions,” says Rice.
Many hospital systems and clinics already collect some of this data through things like patient satisfaction surveys. Currently, that is mostly only accessible to the clinics themselves, and so far has not been used to look at patient satisfaction and experiences at a broader level. Additional opportunities to learn about patient experiences could be through PRAMS-based national surveys or qualitative research projects.
Rice says that if more patient experience data is systematically collected, it would allow us to “have a better understanding of what the gaps are and for whom.” This is an essential step toward equity in maternity care and improved maternal health outcomes.
Data for Systems Change
Individuals, or even individual institutions, will never be able to solve the issues of maternal and infant mortality on their own, regardless of how much data they have access to. Systemic issues such as poverty, access to health care, food insecurity, and affordability of health insurance play a large role in health outcomes and health disparities. Those root causes must be addressed at the policy level, but data is also needed to justify policy changes.
“One idea I’ve had is to look at the natural experiment of the financial benefits that were available during the COVID period to reduce poverty in this country,” says Hogue. “This could show whether financial assistance to people in poverty, over and above the usual, has an impact on infant deaths.”
This is just one example of how research and data could be used to address the upstream issues affecting maternal and child health. Another vital piece is making sure that data is clear, accessible, and impactful to legislators.
Christiansen-Lindquist has been working with individuals affected by stillbirth to advocate for federal stillbirth legislation. A lesson learned throughout this experience, she says, is that data often does not speak for itself. To truly demonstrate the scope and impact of stillbirth, data must be married with lived experiences, stories, and context. That is why, in addition to presenting on the current research about stillbirth to legislators, she also works with advocates and families to make sure that their voices are heard.
When presenting data and research to legislators, it is also important to do so in a way that is easy to understand and demonstrates its relevance.
“I’ve put factsheets together so that every staffer can see how stillbirth impacts their constituents,” says Christiansen-Lindquist. “It allows them to see a quick snapshot of what the issue is. It’s a great tool to provide an overview of a lot of descriptive statistics in an easily digestible way.”
Data visualization and contextualization to drive policy change also have a place in the wider maternal and child health field, outside of stillbirth advocacy. There are organizations that are already mapping abortion access and maternity care deserts nationally, and many maternal and infant health outcomes in Georgia.
“If there are additional geographic and spatial tools created, updated, and available, that is something that is seen as very powerful and useful to advocates and policymakers,” says Rice.
It is essential that beyond just collecting good data, that data is seen by the right people, in the right form. Achieving that will be a step in the right direction toward better maternal and infant health outcomes for all.
Following the Dobbs vs. Jackson Women’s Health Organization decision in June 2022, restrictions on reproductive health care are already having repercussions for maternal health and maternal deaths, but also need further study. Keep an eye out for a discussion of the need for and impact of better data about reproductive health in the new year.
