Stillbirth rates in the U.S. have been deemed “a major public health concern,” according to a new report from the National Institutes of Health published March 15.
The report mirrored a 2022 investigation from ProPublica that found several factors are to blame, including “medical professionals dismissing the concerns of their pregnant patients, a lack of research and data, and too few autopsies being performed,” as well as “alarming racial disparities in stillbirth rates.” ProPublica outlined the similarities between the NIH report and its investigation in a March 23 report.
One of the major issues outlined by both the NIH report and the ProPublica investigation is the lack of systems in place to obtain quality data on stillbirths.
“There was strong agreement among [request for information] respondents that the current system for obtaining, updating, validating, analyzing and releasing data on U.S. stillbirths is deeply flawed at every step,” the NIH report states. Those involved in the study reported that the current system is one “where neither data collection elements nor procedures are standardized, quality assurance is not conducted, data elements are not sufficiently comprehensive to support research, best practices in perinatal pathology are rarely employed, data are not updated once better information is obtained, data are released infrequently, and the quality of the data overall is poor.”
The news also comes just as the U.S. maternal mortality rate hit a 58-year-high and several areas of the country struggle to access obstetrics care as dozens of birthing centers face closure and amid an OB-GYN provider shortage.
The NIH report recommended 12 guidelines for federal HHS agencies to take in order to begin addressing the crisis:
- CDC-led efforts to work alongside state and local officials to address barriers and major challenges facing birthing centers and address these institutions’ barriers to collecting reliable records on stillbirth rates.
- The CDC itself must also expand stillbirth surveillance and data collection to better understand risk factors for stillbirths nationwide.
- HHS and other agencies should work together to “advance the practice of fetal autopsy.”
- The NIH, CDC and HHS must collaborate to “investigate health disparities in stillbirth, in conjunction with other adverse pregnancy outcomes.”
- The NIH will specifically review data on minorities most affected by stillbirth rates to ensure accurate representation is in the data.
- The NIH will also focus on expanding research efforts at the community level and understand more about patient experiences related to pregnancy outcomes.
- Improving data on stillbirth rates across the U.S. “should include geographic areas with strong representation of racial and ethnic minority individuals, economically disadvantaged families, and other groups that may experience disparities.”
- The CDC and NIH will also focus on collecting data from individuals who have lived experience with stillbirths to inform “culturally sensitive programs to support families” after stillbirths occur.
- It is encouraged for other professional societies to also establish culturally sensitive programming to support individuals with proper psychological support in these instances.
- The NIH will prioritize in-depth research into stillbirths and work to identify implications for stillbirth prevention.
- With the data and research, the NIH will establish a baseline of what is normal physiology in pregnancy and incorporate data on health and disease indicators.
- Both the CDC and NIH should also prioritize a “focus on un- and under-investigated areas to discover new risk factors.”