For nearly four decades, researchers have leaned heavily on a unique annual survey to understand the state of infant and maternal health in the United States.
Called PRAMS, the dataset includes a richer variety of information about the life circumstances of newborns and their parents than birth certificates, providing insight into the causes of the higher rates of maternal mortality in the U.S. than in other developed countries. So researchers were distressed in recent weeks when they suddenly discovered they were locked out of the database, without any notice from the Centers for Disease Control and Prevention. And state health departments, which administer the survey, were told by the CDC to cease data collection.
“If we can’t see this information, we cannot develop public health strategies to improve our maternal morbidity and mortality in the United States,” said Marian Jarlenski, a professor of health policy at the University of Pittsburgh. “I don’t know how else to say it, this data system is needed. It’s not an option. It’s part of having a functional public health system.”
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