A new data hub at the Cincinnati Children’s Hospital Medical Center securely links patient data from institutional silos in order to make it easier for researchers to study care that one patient receives at different institutions, and to link a baby’s care to the prenatal care its mother received.
The Maternal and Infant Data Hub integrates maternal, neonatal and pediatric patient records across the greater Cincinnati region. The repository ties together information on more than 110,000 infants born at 14 regional delivery hospitals from 2013 to 2017.
Investigators can also look across regional data to better answer research questions like what medications support the best long-term outcomes in treating particular conditions, what impact opioids are having on our region’s newborns, and how pollution is affecting preterm birth rates in various neighborhoods.
In a blog post on the CincyInformatix website, Eric Hall, Ph.D., an informaticist and associate professor of pediatrics at Cincinnati Children’s, described the data integration challenge.
He noted that researchers are using the Maternal and Infant Data Hub to answer questions about outcomes that occur between care transitions or over the life course. The repository also includes geospatial information for each individual, enabling the integration of neighborhood and community measures.
Researchers looking to conduct studies using data from numerous sources often find aggregating that data to be a daunting and expensive task, he wrote. The Maternal and Infant Data Hub simplifies perinatal data integration by undertaking the data sharing and linking tasks, then hosting and distributing de-identified data sets to approved researchers using an “honest broker” of the data. It provides investigators pre-linked and validated data, freeing them from the many burdens of regulation and expense involved with linking the data themselves.
The registry also supports the analysis of hospital utilization patterns after birth. For example, how might hospital utilization for an infant experiencing intrauterine opioid exposure differ from an infant with no prenatal exposure to substances of abuse? What neighborhood factors might affect emergency department utilization?
One study using the hub involves antibiotic use in infants with gastroschisis, a birth defect of the abdominal wall in which a baby’s intestines extend outside of the baby’s body, exiting through a hole beside the belly button. The study is evaluating the risk of early onset sepsis as well as the reliability of certain laboratory tests along with antibiotic use trends in this population.
The research team will work to integrate more data sets, including additional regional electronic health records and other ancillary data sets representing environmental measures.
In addition, several more studies are planned, including analyses of:
• Individual and community factors associated with hospital utilization;
• Inpatient stays, emergency department visits, and urgent care visits during the first year of life;
• Healthcare utilization measures among preterm infants to identify opportunities to avoid preventable readmissions or emergency department visits;
• Growth and development outcomes between infants testing positive for intrauterine opioid exposures at the time of birth and infants for whom no exposure to substances of abuse were detected;
• Antibiotic use, endomyometritis, and other perinatal outcomes among women who develop chorioamnionitis; and
• The impact of a targeted health literacy intervention on newborn caregivers’ knowledge and care utilization.