1 THE PROBLEM/CONTEXT

On February 6, 2020, the release of a National Academy of Sciences, Engineering, and Medicine (NASEM) report “Birth Settings in America: Outcomes, Quality, Access and Choice” went largely overshadowed by Donald Trump's first impeachment acquittal.1 One of the conclusions of this 369-page text included the quietly radical statement that “strengthening data collection, in particular, improving the usefulness of birth certificate records for birth-settings research, is key to advancing understanding of outcomes across birth settings.”1Congresswomen Lucille Roybal-Allard (D-CA) and Jaime Herrera Beutler (R-WA) had requested the Birth Settings report in response to the well-documented reality that the United States spends proportionally more on childbirth than any other high-resource country, yet has significantly poorer outcomes, disproportionately borne by families of color.1, 2

The United States’ market-driven, multimodel health care system places a great deal of emphasis on the patient as “informed consumer.” However, a marketplace of opinions is not necessarily one grounded in fact—as the last 4 years clearly demonstrated. High-quality data are essential to navigating the maze of options and contradictory assertions offered by a dizzying array of sources, from disagreeing experts to social media speculation. Although the COVID-19 pandemic seems to have increased demand for community (home and birth center) birth,3-5 those seeking to make informed decisions about birthing outside the hospital are deeply disadvantaged in the United States as home birth outcome data are sorely lacking.

Consumers can find in publicly available data from the Centers for Disease Control and Prevention (CDC) that the national rates for cesarean births and induction were 31.7% and 29.4%, respectively, in 2019.6 In addition, the Federal Joint Commission oversees the accreditation of hospitals. The Commission requires that accredited facilities report aggregate numbers from health records annually on four perinatal indicators: elective delivery; cesarean; exclusive breast milk feeding; and unexpected complications in term newborns.7 Some states, including New York, require reporting of hospital-level outcome data.8 There is also published research based on data voluntarily submitted to the Perinatal Data Registry™,9 maintained by the American Association of Birth Centers, into which accredited centers report.10 However, no national, mandatory monitoring mechanism exists for home or birth center births, and data reported for hospitals vary dramatically by state and hospital system. In short, maternity data collection and reporting in the United States is as fragmented as its health care delivery system.

Debates about birth setting and safety in the United States have consumed enormous energy and, at times, have been contentious. Yet, to date, no one source or combination of data sources can put these debates to rest. In 2014, Cheyney and colleagues published findings from their analysis of home birth health record data from the Midwives Alliance of North America (MANA) Statistics Project registry.11 Although these findings were congruous with large, robust, population-based observational studies of home birth safety from The Netherlands, Canada, and the United Kingdom, their sample represented only about 30% of practicing home birth midwives.11-16 The researchers described voluntary participation in the project (known as the MANA Stats project) as the study's primary limitation. Other large studies of home birth outcomes in the United States used birth certificate data, which are not standardized concerning intended and actual place of birth.17

The authors of a 2012 Cochrane review on planned home versus planned hospital births noted that randomized controlled trial evidence sufficiently powered to assess differences in perinatal mortality by birth site may never be available.18 Nevertheless, there does seem to be a high degree of consensus around the idea that improved interprofessional collaboration and mechanisms for transfer to a higher level of care are key to improving outcomes across settings, and that integration of midwifery in the United States is poor.19

In 2015, Snowden et al published a population-based, retrospective cohort study of all births that occurred in Oregon in 2012 and 2013.20 This followed a revision of Oregon's birth certificate that allowed disaggregation of hospital births into: (1) planned in-hospital and (2) planned out-of-hospital that ended in the hospital after an intrapartum transfer. Snowden et al’s findings included higher perinatal mortality in planned out-of-hospital births than among planned in-hospital births, but the absolute risk of intrapartum or neonatal death was low in both settings (3.9 vs. 1.8 deaths per 1000 deliveries). The authors noted that outcomes for mothers were better for several indicators outside the hospital.20 Their discussion included thoughtful analysis of education standards for midwives and the extent to which midwifery care is integrated into health systems—spheres in which the United States is notably different from other high-income countries.20 Snowden and colleagues were also careful to note that outcomes are generally good across setting, that no setting is risk-free in the United States, and that maternal autonomy in decision making should be respected regardless of where and with whom people choose to give birth.

2 AN EXAMPLE FROM NEW YORK STATE

In New York State (NYS), home birth has mirrored the national trend, doubling from 0.51% to 1.04% of all births between 2003 and 2018.21 However, conclusions about outcomes are problematic as birth certificates remain the data source for state vital statistics reports. New York State only began requiring the intended place of birth field in 2008, and the planned/unplanned disaggregation remains unpublished. Reporting of health record data to any entity doing aggregate analysis remains voluntary. Although MANA’s Division of Research maintained a voluntary, prospective, national database of standardized community birth outcomes from 2004 to 2018, only about 30% of NYS births have been included.

In response to this lack of data, we decided in 2014 to undertake a retrospective abstraction of NYS health records missing from the MANA Stats national database. MANA’s system offered a source for the descriptive examination of outcomes based on standardized health record data. The nearly 200 data elements in MANA’s 2.0, 3.0 and 4.0 data sets meet the requirements of the Agency for Healthcare Research and Quality guidelines for data registries.22 A complete sample of a few years of outcome data using the fields and parameters of the MANA Stats data set would have allowed us to produce aggregate, descriptive statistics for all or most home births in NYS during that time period. We aimed to examine the following research questions: What were the characteristics (age, parity, previous obstetric history) of women who planned home birth care in NYS? What were NYS planned home birth outcomes? Specifically: How many maternal and/or neonatal deaths occurred and what were the causes? How many maternal and/or neonatal transfers occurred? Were they during labor or postpartum? What were the indications? What was the cesarean rate for intended home births that required transfer? What was the induction/aumentation rate for intended home births that required transfer? What was the rate of assisted vaginal delivery (forceps and/or vacuum) for intended home births that required transfer? How many maternal lacerations occurred? What were the types and degrees of these? What was the distribution of neonatal Apgar scores?

Among our motivations was the 12-fold higher maternal mortality in New York City (the nation's most populous jurisdiction) among non-Hispanic Blacks (compared with Whites).23 This rate is four times higher than the national average for the same population.23 We were also inspired by a call from the then NYC Health Commissioner to prioritize reducing racial inequities in maternal outcomes and by the 2014 joint statement calling for a reduction in primary cesareans, made by the American College of Obstetricians and Gynecologists and the Society for Maternal-Fetal Medicine.23, 24 Lowered cesarean birth rates were highlighted by the Cheyney et al 2014 national analysis and a 2020 meta-analysis as a clear benefit of planned home birth.11, 25

Aware that poor birth outcomes are rare and that home birth detractors often point to missing data as a hiding place for suboptimal outcomes, we wanted to create the most complete sample possible of standardly collected outcome data covering at least 3 years for NYS, to achieve a sample size that would allow analysis of rare events. We felt strongly that availability and use of a complete data set based on health records would improve interprofessional dialogue and collaboration, while letting the numbers speak for themselves in the home birth safety debate.

The exercise we undertook quickly became more challenging than anticipated. As a result of the way birth certificate data are collected and reported by NYS just arriving at a denominator to estimate the percent of planned home births represented in (or, conversely, missing from), the MANA Stats database required a special request to the NYS Vital Statistics Program each year. Drawing on Cheyney et al’s 2014 work, we assumed that around 11% of planned home births resulted in an intrapartum transfer and were thus misclassified on birth certificates as planned hospital births.11 From these data, we were able to estimate that somewhere between 1,800 and 2,000 home births are planned each year in NYS—an estimated 89% are completed and approximately 11% result in transfer and misclassification.

Unfortunately, we found limited support for the proposed study despite six formal proposals and multiple other informal appeals. It is worth noting that New York City invested $12 million during the same period toward reducing perinatal complications among families of color.26 One of the four pillars of NYC’s 5-year plan was improved data tracking and analysis of maternal mortality and severe maternal morbidity.27 Ultimately, funders were not convinced that improving the quality of home birth data was consistent with their goals of informing health consumers and improving health outcomes among families of color. Yet, the incorporation of home and birth center options, which requires access to reliable data, could be a viable component of a comprehensive approach to reducing mortality and morbidity by reducing the primary cesarean rate.

3 THE WAY FORWARD

Our call for more integrated and reliable data collection across births settings and practitioner types began in a Professional Issues class during which home birth midwives described to students their practice models and pointed out that data collection was a challenge. Seven years later, we are forced to ask where the real problem lies. Why are community birth models that have been documented to reduce cesarean rates, yield high patient satisfaction, and are increasingly demanded so understudied?

The data collection system we envisioned jump starting in New York is not yet feasible. Given the findings of the NASEM Birth Settings study and the highly publicized concern over rampant inequities in birth outcomes, why is this the case? Consumers deserve a complete database to inform their decisions about practitioner type and place of birth. As the Biden-Harris administration has quickly enacted sweeping social reforms, is it realistic to imagine a national midwifery data collaborative bringing together health record data for the 10.7% of births that are midwife-attended nationwide each year (as of 2019),28 regardless of setting? We think it should be. Public and maternal health system leaders in the United States need to recognize that people give birth in multiple settings with an array of practitioner types.

We call for a meta-repository of all midwifery-attended birth that includes: (1) documentation of planned birth center and home births; (2) hospital births in a way that would distinguish those that were transfers from birth centers or home; and (3) certification of the attending midwife (CNM/CM/CPM/other). Such a meta-repository would be an expansion of state-level perinatal quality collaboratives (PQCs) that currently collect data from health records, but at the hospital level.1 These PQCs have mostly been funded by the CDC, which has also advocated that states seek funding from a variety of sources.29 With more robust funding, midwives in community settings could be supported in data collection and reporting, thus rendering PQC data more complete and useful to families. Furthermore, such an initiative could help unite midwives across their various practice settings, certifications, and state licensures and demonstrate the value of midwifery models of care.

All governments, not least the United States’, owe current and future families nationally standardized healthcare accountability mechanisms, free of philosophy and politics, grounded in complete, high-quality health record data. We contend that equitable and respectful care, which critically affect outcomes, cannot be fully achieved without complete, high-quality data.30 Ideally, this would be supported by government and/or private agencies who share the goals of improving maternal and infant morbidity and mortality and who recognize community birth, particularly in the COVID-19 era, as a strategy toward achieving these goals.

ACKNOWLEDGMENT

The authors wish to acknowledge and thank Abigail Bella, MS, and Nubia Earth Martin, MS, for the research assistance/chart abstraction they provided and the home birth midwives who trusted us with their records.

CONFLICT OF INTEREST

The authors attest to having no conflicts of interest to disclose.

Data sharing is not applicable to this article as no new data were created or analyzed in this study.

REFERENCES

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