The shocking recognition that the U.S. has the highest maternal mortality rate of any high-income country in the world—and that most of those deaths are preventable—has rightly been called a national emergency. Black women are two to three times more likely to die from pregnancy-related causes than white woman and in New Jersey, that figure is far worse—Black women are seven times more likely to die. Those disparities are directly linked to longstanding inequities in the social determinants of health, unconscious biases, and other elements of structural racism that are deeply embedded in the health care and social service systems on which pregnant and birthing women depend.
In recent years, hospitals, professional associations, and state governments around the country have responded to poor maternal outcomes with review boards, quality improvement committees, new payment models, and other initiatives. While welcome, little of this has dislodged the underlying systemic barriers that play such a potent role in the current crisis. Nor have these efforts adequately engaged the people who are in the best position to articulate their own needs and offer insights for addressing them.
Genuine solutions must begin with a baseline of information that is currently hard to come by. Data are tools for gaining power, and we don’t have enough of them, hobbling efforts to strengthen the continuum of maternal care, review and revise policies, programs, and practices that impact perinatal pathways, and assess the impact of change.
States vary significantly as to what information they require providers to gather and report, and especially on the extent to which data are broken out by race, ethnicity, geographic location, income, and other revealing characteristics. In New Jersey, the state health department does an admirable job of compiling hospital-specific and statewide data on pregnancy and childbirth complications and rates of surgical births, and critically, it reports that data by race. But even the most rigorous data-collection efforts often omit influences that can ease, or worsen, maternal outcomes.
Maternal characteristics captured in New Jersey, for example, include age, insurance coverage, and the presence of diabetes, hypertension, and pre-eclampsia, but no measures of mental health, housing needs, or socioeconomic circumstances. An Urban Institute analysis hints at the resulting gaps, calling indicators such as “depression, anxiety, social needs, postpartum attachment, prenatal and postpartum visit attendance, patient perceptions and trust” integral to advancing care equity. The failure to collect and stratify that kind of data is a lost opportunity to strengthen culturally and linguistically effective services and optimize outcomes.
We also need to understand more about what women are experiencing before, during, and after they give birth and how they perceive their clinical visits. Do they feel respected, heard, and fully informed about their options? Do their providers speak a language they can understand, and are those providers sensitive to their lived experience?
Every maternal and child health encounter, whether at a hospital or clinic, public health department, or social service agency, offers an opportunity to collect relevant data, drawing on an appropriate mix of payer and provider records, surveys, qualitative interviews, and other input, obviously with privacy protections in place. Determining what information is needed, and how best to gather and analyze it, requires input not only from researchers and public health professionals but also from affected communities so that the learnings serve those who are confronting the greatest maternal health challenges.
The right mix of data can paint a fuller picture of the risks to pregnant and birthing women, including toxic stress, and inform efforts to redesign systems. Coupled with effective leadership, broad commitments to cross-sector collaboration and community partnerships as well as adequate investments in infrastructure, training, and staffing can help dislodge the implicit biases that are so entwined with maternal health inequity.
Importantly, data should not be held exclusively by the systems that collect it. We know that when consumers have access to transparent information, presented in a user-friendly format, they are better able to make informed choices and find providers who reflect their own priorities. Quality of care, costs, and experiences with providers and office staff are among the important influences on healthcare decision-making, according to a McKinsey survey. If that information is not readily available, people who are seeking care are essentially disempowered. Mechanisms for sharing deidentified data widely can also be used by community-based organizations, arming them to act as liaisons to help pregnant and birthing women interpret information and put it into use.
There is not a single solution to the shameful maternal health crisis in the U.S., but comprehensive knowledge is a springboard for action. The richest country in the world must not remain a place in which bias is commonplace in maternal care and health outcomes are abysmal. A state with the fourth highest per capita income in the U.S. should not also have fourth-highest maternal mortality rate. Action is essential and it begins with information.