This is a four-year project to demonstrate linkages between pregnant person and infant records, pull data from the electronic health record (pregnancy to postpartum and birth to six years old) for the identified dyads, and develop a surveillance system by formalizing pathways to prospectively add data to a multi-site collaborative in an attempt to better describe national trends. Our exposures/outcomes of interest include medications for opioid use disorder, polysubstance use, neonatal abstinence syndrome, cytomegalovirus, HIV, HSV, syphilis, and stillbirths. As a site with a diverse patient population, divisive healthcare policy landscape, and proven history of linked longitudinal pregnant person-infant data research, USF plans to successfully meet the objective of this important NOFO. By developing processes to combine comprehensive extracted and abstracted variables from healthcare records of diverse pregnant person-infant dyads, our project will expand the breadth and quality of data and information on exposures and outcomes for which longitudinal surveillance is historically challenging. We will use this data to enhance the level of evidence surrounding specific perinatal exposures and outcomes to inform contemporary literature, best practice guidelines, and actionable initiatives. Through our project, we will collaborate with other national investigators to share protocols to ensure comprehensive data capture and adopt innovative strategies to optimize our site’s prompt data collection and reporting to operationalize prospective surveillance of future dyads or emerging exposures.
We aim to achieve several measurable, short- and intermediate-term outcomes through the proposal outlined for this NOFO by the end of the project period. Our outcome measures align with four principal strategies to optimize surveillance efforts for pregnant people-infant dyads: 1) develop a pathway to collect data for retrospective and prospective surveillance, 2) develop a method for ensuring accuracy and completeness of data, 3) facilitate timely sharing of discrete data between clinical and public health partners as well as lessons learned to assist with efforts for other national collaborators, and 4) synthesize data to inform improvements to patient care, guidelines, and policy in domains of individual clinical care and community public health.
In utilizing these strategies, which correspond with the logic model laid out by the CDC in this NOFO, we expect to make demonstrate the following outcomes:
• Increase surveillance data collection between clinical and public health partners
• Increase access and availability of electronic health record and public health data
• Decrease the time from identification of key dyad exposure or outcome to report / submission
• Increase completeness of surveillance system data that can be leveraged for emerging threats during pregnancy to pregnant people and their infants
• Increase awareness by CDC of the data and how the data are shared and processed between clinic and health departments for public health reporting
• Increase implementation of prevention activities and dissemination of findings
• Increase contribution to a collaborative network to address important public health issues that have an impact during pregnancy and to infants
• Increase interoperability of data systems by improving structure
Our project team has expensive experience working with linked data for pregnant person-infant dyads, including projects with the CDC. We will leverage this experience in our proposed strategies, activities, performance evaluation, and work plan to evaluate the priority exposures and outcomes of this NOFO.
