Let COVID-19 Serve as a Catalyst to Fix National Crisis of Poor Maternal Mortality Data

Understanding of the rising rates of maternal deaths in the United States, the country with the highest rate of maternal mortality in the developed world, is limited by inconsistent and incomplete data.1 The COVID-19 pandemic is causing additional strain to health systems. Meanwhile, confusing or nonexistent rules about how to collect maternal health data during the crisis are making it even more challenging to identify concerning trends. Furthermore, racial disparities in maternal health were persistent even before the pandemic, with Black women 3 to 4 times more likely to die of pregnancy-related complications than White women. COVID-19 is disproportionately affecting communities of color, with Black Americans 3 times more likely to die of COVID-19 than White Americans.2 Are the factors resulting in racial disparities associated with COVID-19 exacerbating the already dire racial disparities in maternal mortality? If so, how severe is the compounding effect? These questions are hard to answer because insufficient data are collected and shared to give public health professionals a view into these challenges. Data collection practices may have been crippled even further with the health care system's focused efforts to respond to coronavirus pandemic. Without this information, it is harder for public health professionals, policy makers, and care providers to develop strategies and tools to better treat pregnant women with COVID-19 and address racial disparities. COVID-19 Impact on Pregnancies Unlike past infections such as H1N1 and Zika, which were known to cause serious problems during pregnancy, there is no clear relationship known between pregnancy and COVID-19. The American College of Obstetricians and Gynecologists (ACOG) notes that in this rapidly evolving situation, care providers are forced to rely on anecdotal information rather than data to make care decisions. There are many unknowns, including whether the virus can be transmitted during intrapartum or breastfeeding periods.3 The lack of a clear answer and the resulting uncertainty may have severe downstream effects. The result is high levels of uncertainty among pregnant women and care providers alike. Obstetricians and gynecologists are being flooded with information based on incomplete data with no conclusive results, leaving room for error and confusion. While concerns over catching COVID-19 in medical offices have prompted some patients to shift to telehealth appointments, providers have noted that overall rates of prenatal visits have fallen, which can have serious consequences if concerns during pregnancy are not caught and addressed early enough. This uncertainty is why quality data collection is important. Expecting and postpartum mothers deserve better-informed care. Better data can also reveal concerning trends, especially for Black women, who are at higher risks of poor outcomes from both pregnancy and COVID-19. Indeed, concerns over racial inequities in access to health care and in maternal outcomes have prompted ACOG to call on the Centers for Medicare & Medicaid Services to extend Medicaid coverage for pregnant women from 60 days to at least 1 year postpartum.4 COVID-19 Disrupting Data Collection Efforts In response to the pandemic, hospitals have taken a wartime-like approach to triage patients quickly to limit spread and diagnose and treat COVID-19. Often this means capturing only data specific to COVID-19 (domestic and international travel history, possible contact with a known COVID-19 case, etc). Similarly, public health surveillance tools often capture only what are deemed essential data, which currently do not include pregnancy status. There is no national standard for collecting data on pregnancy status during disease outbreaks. Frequently, race and ethnicity data are missing from local data reports and are not systematically linked to social determinants of health, such as work status, population density, housing, and food security. Given what we know historically about both disproportionate outcomes in minority communities and more severe outcomes in pregnant women and infants, pregnancy status, race, and ethnicity data should be considered vital information across the United States. Data on COVID-19 and pregnancy are collected through several different methods—clinical studies, case reports, audit tools, and surveillance tools. But inconsistent reporting practices mean these data may not be complete and reliable enough to capture a national or even local picture of what is happening. Death certificates are commonly used by epidemiologists and public health officials to detect clusters of deaths or to link specific risk factors to certain causes of death. Yet, reporting COVID-19 deaths can be complicated because different states and localities have different rules about recording and reporting causes of death. How to attribute cause of death to COVID-19 patients, especially for patients with underlying conditions, may not be clear.5 Data quality, especially the accuracy of information on a death certificate, is hindered when deaths occur outside of a health care setting, a common occurrence during the COVID-19 pandemic.6 Complicating matters, guidance on how to code deaths for pregnant patients with COVID-19 is also not clear. Maternal death statistics depend on what is listed as the underlying cause of death on the certificate. But in the case of a pregnant or postpartum woman with COVID-19, it may not be entirely clear whether COVID-19 is the underlying cause of death and whether it has been aggravated by the pregnancy. With COVID-19 overwhelming hospitals and disrupting otherwise standard practice, maternal death may be mischaracterized and undercounted. Maternal mortality data quality is already poor due to the reliance on inaccurate information on death certificates, and these disruptions are only making it worse. Improving COVID-19 Pregnancy Data Collection COVID-19 surveillance tools were rapidly designed as minimally viable products that included only the questions that were immediately determined to be essential. The definition of what is essential, however, begs questioning. Historically, pregnant women experience more frequent severe outcomes from respiratory diseases than nonpregnant individuals. Yet, COVID-19 surveillance tools do not consistently ask for an individual's pregnancy status. To fully understand the impact of COVID-19, surveillance tools need location data, race and ethnicity data, and pregnancy status data, as well as linking of data to social determinants of health data. According to ACOG, patient registries are critical to collect information on pregnant women who have COVID-19 and neonates. The University of California, San Francisco (UCSF), PRIORITY study provides an example of how to do this well. Registries such as UCSF's PRIORITY offer comprehensive data on COVID-19–positive pregnant women.7 However, it is not enough for one institution to collect this information. To effectively inform public health policy, data collection should be nationwide, consistent across institutions, and coordinated among entities. The key is implementing comprehensive data reporting across health care organizations that includes input from providers. Second, tracking outcomes is critical. The Centers for Disease Control and Prevention (CDC) issued guidance on testing newborns whose mothers have COVID-19, similar to a protocol they instituted for Zika virus disease.8 In a recent meeting with the HHS Secretary's Advisory Committee on Infant Mortality, CDC officials noted their efforts to track maternal COVID-19 data through birth certificate reporting and other vital statistics, including COVID-19 status of the mother, birth timing, date of delivery, cesarean deliveries, and preterm birth by month. The American Association of Medical Colleges (AAMC) recommended capturing community-level data that adequately reflect the neighborhoods to which COVID-19 patients are discharged, noting that county or zip code data are not specific enough for densely populated communities likely to be most impacted by infectious disease.9 “While health inequities related to COVID-19 are most certainly developing in real time, the fact is that our current data collection efforts are inadequate and do not give us a complete picture,” said Ross McKinney, MD, AAMC chief scientific officer. “Finally, current local data reports have noted a significant amount of ‘missing data,’ meaning data about race or ethnicity were not captured and reported.” It's Not Too Late to Act The maternal mortality crisis in the United States has prompted nearly every state to establish a maternal mortality review committee to scrutinize all the maternal deaths within their state and determine whether those deaths were preventable. This review helps determine interventions to reduce the leading causes of maternal death in the future and address persistent racial disparities in maternal health. But without clear and comprehensive data, it is hard to understand what the problem is and to develop effective interventions to address that problem. COVID-19 is the most recent pandemic, but it will not be the last. Incorporating pregnancy status questions into surveillance tools today will allow public health professionals to understand critical trends, develop better tools to better treat pregnant women, and help address persistent racial disparities in maternal health. Establishing pregnancy as an essential data point today will prepare us for disease outbreaks of the future.

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