Sustained improvement in caregiver-reported infant demographic collection: a pilot towards equitable outcomes in the neonatal intensive care unit

Background Infant mortality disparities, with prematurity among the leading causes of death, make it critical for neonatal intensive care units (NICUs) to assess internal demographic and outcomes data. Assessment of a delivery hospital NICU within a large children’s hospital system revealed “Unavailable” infant race among the top demographic categories. Objective To decrease the rate of “Unavailable” infant race in the electronic health record by 10% in a level III NICU by December 2023 and sustain for 1-year. Design/methods We developed a multidisciplinary team, completed Gemba walks, conducted Plan-do-study-act (PDSA) cycles, and analyzed outcomes in process control charts. Results “Unavailable” infant race decreased from 97% to 49% and was sustained. Modifying hospital registration processes, updating caregiver questionnaires, engaging and educating staff contributed to success and sustainment. Conclusions We reduced “Unavailable” data by 48% with 6-months sustainment prior to project expansion. Emulating this process can improve demographic data accuracy nationally.