Asking the Right Questions to Help Lower Preterm Births.
Asking the Right Questions to Help Lower Preterm Births
SPH researcher Candice Belanoff argues that a key CDC questionnaire given to pregnant people should include questions about racial discrimination to better assess how interpersonal and structural racism can affect reproductive health outcomes.
In June of 1981, the Centers for Disease Control and Prevention published an article that described a rare lung infection in five young gay men in Los Angeles. Researchers soon realized that they had discovered what would later become known as acquired immunodeficiency syndrome, or AIDS.
Candice Belanoff was in seventh grade when the article was released and she came of age in New York City at the height of the HIV/AIDS epidemic of the 80s, a crisis that appeared at the intersection of politics, public health, and social justice. The response to the epidemic was slow and decentralized; it took years for the U.S. to acknowledge the severity of the crisis, which disproportionately affected marginalized communities. The epidemic carried a vital lesson for public health researchers and casual observers alike: a problem must be correctly and publicly named before it can be solved.
This is a lesson that Belanoff, a social epidemiologist and a clinical associate professor of community health sciences at the School of Public Health, still carries today. It is also the central theme in a recent commentary that Joanna Almeida of Simmons University co-authored with Belanoff and Kristin Erbetta, published in the Maternal and Child Health Journal: “The Time has Come for All States to Measure Racial Discrimination: A Call to Action for the Pregnancy Risk Assessment Monitoring System.”
The Pregnancy Risk Assessment Monitoring System, or PRAMS, is also a product of the 1980s. Developed in 1987 by the CDC, the PRAMS questionnaire is administered to people shortly after pregnancies that result in a live birth or fetal death. While PRAMS is run by the CDC, states have control over its administration; this way, state governments can tailor the questionnaire to investigate issues most relevant to their jurisdiction. Today, it is administered in 47 states, New York City, Washington, D.C., Puerto Rico, and the Great Plains Tribal Chairman’s Health Board. It covers about 83% of all births in the US and asks questions about experiences from one year before childbirth to up to six months after.
The data it provides are vital. “States can use it to monitor progress around all sorts of issues of maternal and child health,” Belanoff explains. “We can monitor things like: Are pregnant people getting oral health screenings? Are pregnant people seeing a prenatal provider on time? What sorts of stressors are pregnant people experiencing during and after their pregnancy?”
Belanoff has firsthand experience with the survey. As a graduate student at Harvard, she worked for the Massachusetts Department of Public Health in 2005 while it prepared to pilot PRAMS for the first time. “I did everything from stuffing envelopes with the surveys to analyzing the data myself,” she says. “And since it was a pilot program, we were building the airplane as we flew. But I got to see how the sausage is made when it came to a major survey that the state really depends on.”
PRAMS was finally implemented in Massachusetts in 2007 and Belanoff helped the state write its first PRAMS report. “It was like raising a baby – it was very gratifying. You see the data as they’re born, and you watch them morph into wide-reaching and vital report.” But Belanoff also had the opportunity to see what she calls the “negative space of survey-making,” a space that her recent commentary seeks to fill.
The article explores the phenomenon of preterm birth (PTB), or any birth before 37 weeks of gestation. It is among the leading causes of infant mortality in the United States, and there are racial inequities in incidents of preterm birth that continue to widen. Among non-Latinx white women, the rate of PTB was 9.1% in 2018; among non-Latinx Black people, the rate was 14.1%. PTB is the largest contributor to the racial and ethnic gap in infant death in the United States.
But the scholarship on the problem is scarce. According to the commentary, research has primarily focused on maternal characteristics, such as medical risk factors, behavioral attitudes, or sociodemographic status. For example, access to prenatal care, such as basic check-ups during pregnancy, is one explanation for disparities in rates of PTB that scholars commonly reach for. However, studies show that increased access to prenatal care among non-Latinx Black people does not yield lower rates of preterm birth; as such, prenatal care does not seem to address the racial inequities found in adverse birth outcomes. Evidence suggests that other theories are similarly inadequate, including those that that attribute racial inequities to substance abuse or socioeconomic status.
In other words, maternal characteristics cannot completely explain the racial gap in incidents of preterm birth. In fact, the tendency of scholarship to ascribe inequities to individual behavior is all too familiar to Belanoff; during the AIDS crisis of her childhood, officials and researchers alike were keen to blame the individual behavior of gay men above all else. “The dominant public narrative back then was not only that gay men weren’t really victims, but that they were in fact the perpetrators of the epidemic,” Belanoff says.
“You hear this all the time: demographic inequities must be the result of behavior or ‘lifestyle.’ It’s comforting to blame people, to say that they should have made better life choices. Because then we can avoid the real tragedy – that there are systematic advantages given to some groups and disadvantages shouldered by others.”
One of the roots of this tendency, and the thrust of the commentary, is the fact that many researchers simply have no other data to rely on—this is the “negative space” she encountered as a graduate student. “If you don’t ask the right questions,” she explains, “you’ll get answers that are only half-truths, at best. You’ll end up asking the wrong questions, and they’ll take you in a direction that doesn’t help you understand the root of the problem.”
As mandated by the CDC, the PRAMS questionnaire has three parts: the first is a group of core questions that all states must ask; the second is a group of optional questions that states may choose to use; and the third is space for state-created questions.
Belanoff and her co-authors discovered that there is only one question that asks about interpersonal racial discrimination, and even then, the question is listed as optional. It asks: “During the 12 months before your new baby was born, did you feel emotionally upset (angry, sad, or frustrated) as a result of how you were treated based on your race?” While 22 states include this question on their questionnaire (with some minor variations in wording), 29 states do not measure racial discrimination in any capacity on PRAMS.
This constitutes a worrisome hole in the scholarship. “There is a pretty substantial body of research that says exposure to racism, whether interpersonal or structural, is bad for your health. It’s a stressful life experience, and it can diminish your well-being,” Belanoff says. “We believe that exposure to racism is probably explanatory of some of these gaps in PTB. But we can’t know for sure unless we start collecting data on exactly that.”
There is already evidence for this link. A 2017 study found that chronic worry about racial discrimination among non-Latinx Black women was associated with an elevated risk of PTB. Similarly, women who had experienced interpersonal racial discrimination in the 12 months before birth also had an elevated risk of PTB compared to Black women who did not report such discrimination.
Structural racism, which the commentary defines as “the systems-level factors related to, yet distinct from, interpersonal racism,” can also have a negative effect on health. Historic red-lining, racial segregation, underrepresentation in elected office, and other systemic factors have been linked to adverse birth outcomes, according to a study conducted in 2018 and another in 2020.
While all of this research provides useful data, its scope is limited relative to that of PRAMS. PRAMS represents more than three-quarters of all births in the U.S., yet many of the studies on racial discrimination and adverse birth outcomes have been conducted in single cities, states, or communities. Moreover, these studies commonly focus on non-Latinx Black people—and while this demographic disproportionately faces racial discrimination, the effect of racism on the health of other racial and ethnic minorities is not as well-documented in the scientific literature.
To begin to remedy this, Belanoff and her colleagues devised a “call to action” for the PRAMS survey. They write that the inclusion of a “robust measure of interpersonal racial discrimination” will “enable researchers to link PRAMS data to area-level measures of structural racism,” allowing the literature to explore how interpersonal and structural racism “ultimately harms the reproductive health outcomes of racial/ethnic minorities.”
At minimum, the study exhorts the CDC to include the currently-optional discrimination question as mandatory for all participating states. But they hope the CDC goes much further; according to the commentary, PRAMS should include a “validated scale of interpersonal racial discrimination” that could assess how often and where people were exposed to racism in the first place. According to Belanoff, “if we see a high prevalence of people reporting interpersonal racism, we want to know in what setting it’s happening—is it at the store? Is it with your healthcare provider?”
While the raw PRAMS data will be useful, data does little work in a vacuum. It needs to be understood in concert with other realms of inquiry. “We need to pair this work with a deep qualitative dive into how people are experiencing racism, in what contexts, and at what intersections of their own identities,” Belanoff says.
Finally, Belanoff argues, the research needs to come out of the lab for it to be of any use. “Really, we’re trying to develop the most accurate, effective, and justice-promoting solutions. If we’re not going to change a policy, introduce programming, and remedy these problems, there’s no point in doing research at all. We should just put our efforts elsewhere.”
Belanoff sees the biggest opportunities within local communities themselves; this is where she says the conclusions of research should be directed. “A big interest of mine is creating a portal between the data we collect and the communities who could use it to understand the context in which they live,” she says. That’s not to say that communities don’t have a great deal of wisdom of their own when it comes to the problems they face. But researchers have access to huge swaths of information, and creating a collaborative partnership between universities, data collection entities, and the communities that they seek to help is of paramount importance to Belanoff and her colleagues.
“There’s a trend in public health of exploiting community resources and giving nothing back,” Belanoff explains. “We need to listen to them, to understand what they need from us and our infrastructure, and then use our infrastructure to create policies and programs that can reduce adverse birth outcomes of the kind we’re seeing.” The commentary suggests a few ways forward for the CDC, but Belanoff argues that there should be plenty of opportunities for community members to contribute questions of their own.
Fundamentally, the call to action is a call for both governments and researchers to precisely acknowledge and name a problem whose effects can be pernicious and deadly. A failure to call interpersonal and structural racism for what it is—not as merely a problem of maternal behavior, or income, or access to prenatal care, and so forth—is a “dereliction of duty,” Belanoff says. Since its inception in 1987, PRAMS has proved to be an invaluable resource. But now is the time to “center the voices and experiences of folks for whom these surveys were, quite honestly, not intended originally.
“I say this out of a place of love—the PRAMS survey means so much to me. But it’s long past time to reimagine PRAMS so that we can prioritize the experience of people who have been systematically marginalized.”
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