For almost four decades, the researchers strongly relied on a single annual survey to understand the state of maternal and maternal health in the United States.
Called Prams, the data set includes a richer variety of information on the life circumstances of newborns and their parents than birth certificates, providing an overview of higher rate of maternal mortality in the United States than in other developed countries. The researchers have therefore been in distress in recent weeks when they suddenly discovered that they were locked in the database, without any notice of the centers for Disease Control and Prevention. And state health services, which administer the survey, were informed by the CDC to stop data collection.
“If we cannot see this information, we cannot develop public health strategies to improve our maternal morbidity and our mortality in the United States,” said Marian Jarlenski, professor of health policy at the University of Pittsburgh. “I don’t know how to say it else, this data system is necessary. This is not an option. This is part of having a functional public health system. »»
The CDC told Stat on Friday that the interruption was temporary and was the result to need to make the investigation in accordance with some of President Trump’s decrees. “Prams has not been closed,” said Paul Prince, spokesperson for the CDC, in an email. “There have been adjustments to the calendar to ensure compliance with the Trump administration decrees, but these changes do not affect the continuation of the program.”
Prince refused to answer questions about what is done to make the survey consistent or to specify the decrees concerned – although the CDC has temporarily lowered and made changes to other data sets Comply with Trump’s orders on Dei and the genre.
Last week, the agency published a banner on the PRAMS website indicating that data 2023 should be available on sites by March 2025 “and” PRAMS 2025 BIRTH COHORT Data collection should start by April 2025. “
However, public health experts fear that the interruption can weaken an instrumental data set, and he made the researchers reconsider their dependence on the long -term study. The researchers said that if the data set or the questionnaire were changed to delete breed or ethnicity mentions, this could harm the efforts to improve maternal health.
“If the racial and ethnic variables are deleted, it would have major consequences for our ability to measure disparities in the results of maternal and child health and to assess what works to improve them. This would be very worrying given the flagrant and persistent racial and ethnic disparities in many results that the measures of the task, “said Rebecca Gourevitch, professor of health policy at the University of Maryland.
The survey of the pregnancy risk monitoring system is administered by state health services before, during and after pregnancy and is supervised by the CDC. The program is managed in 46 states, the District of Columbia, Puerto Rico and the Northern Mariana Islands, which represent up to 81% of births in the country. The researchers said that the survey is only powerful due to the range of subjects coversFrom access to insurance and prenatal care to stress factors and income.
“We are and were, in the midst of a maternal health crisis in the United States which has many different dimensions. The PRAMS data ensembles people to ask deep questions about these different dimensions, “said Katy Kozhimannil, researcher in health policy at the University of Minnesota.
The data set was used to shed light on the policy at the state level and local to guide the creation of laws to improve maternal health and assess their success. Data also informed clinicians of how they practice and advise patients in terms of risk factors for unwanted results during pregnancy, said Lindsay Admon, Ob-Gyn researcher and health policy at the University of Michigan.
For example, Admon and his colleagues have used data from Prams to show that many mothers whose births have been covered by Medicaid is not insured 60 days after childbirth, when their eligibility expired. Their work was used to support federal legislation to extend the eligibility for medicaid linked to pregnancy one year of postpartum, a change that was Adopted in 49 states and Washington DC.
The data set occupies his own niche. Birth certificates lack granular data on the circumstances of birth, and although the databases of insurance complaints are more detailed, these can be expensive to access.
The researchers were surprised by the interruption of the investigation, in part, because it was done quietly. Jarlenski realized that something was wrong when one of his students asked for access to data, but did not receive a CDC response, not even a confirmation of the request. So she tried to request the information, in case her student has done something wrong. But she did not hear either. Meanwhile, she was able to access CDC data on birth certificates. “It was really the red flag,” she said.
A force of the PRAMS data is that it has enabled decision -makers to identify health inequalities according to breed, access to health care or other factors in order to mitigate them. “There is nothing really biological which contributes to inequalities and results of pregnancy and maternal results – it was produced by discriminatory policies,” said Joanna Almeida, social epidemiologist at Simmons University who was pressure for the investigation to the investigation Include discrimination measures. “As such, the role of government is to resolve them. (But) if we do not collect the data. We do not know that the problem exists. »»
The data is published on a delayed basis because it is validated, and the researchers are impatient to see the data of 2023, which would be the first to show effects on the maternal health of the Dobbs decision of the Supreme Court in 2022.
Even if the CDC restores the database in the coming weeks, several researchers said their confidence in the program was somewhat shaken. But for a project of this scale, there are not many alternative groups that could support a replacement. And with this lack of information, there could be less important inequalities in the results of maternal health.
Stimulated by interruption, some have considered what alternatives might look like the landonons. Although it is not sure that the data would be available again, the data rescue project has kept the topline data available on the CDC website. A survey on the PRAMS scale would not be possible for any organization to tackle, but some epidemiologists have started to discussions on how to create other local data sets on which they can rely.
Jonathan Huang, epidemiologist at the University of Hawaii in Mānoa, began to have conversations “to ensure that whatever happens, more people are informed, can access and can interact with this data”. Part of his goal, he said, consists of people knowing that there is data to ask questions they may have, as well as support efforts that can answer more local questions.