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Improving Race and Ethnicity Data Collection in an Academic Neonatal Intensive Care Unit
Yarden S Fraiman1,2,3, Helen I Healy1,2,3, Eileen Malala1,2
1Department of Neonatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts.
Insights
Accurate race and ethnicity data is crucial for neonatal care equity. A quality improvement initiative in a neonatal intensive care unit (NICU) successfully reduced missing demographic information from 30% to 10%.
Area of Science:
- Neonatal care quality improvement
- Health equity research
- Demographic data accuracy
Background:
- Significant racial and ethnic inequities exist in neonatal care and outcomes.
- Accurate demographic data is essential for equity-focused quality improvement initiatives.
- Collecting accurate race and ethnicity data for neonates is challenging due to their inability to self-report.
Purpose of the Study:
- To implement a quality improvement initiative to increase the completeness and accuracy of race and ethnicity demographic information in patient records.
- To address challenges in collecting demographic data for neonates in a neonatal intensive care unit (NICU).
Main Methods:
- A quality improvement initiative was conducted in a large, academic, level III NICU from January 2021 to June 2025.
- The initiative focused on reducing missing or unknown racial and ethnic demographic information.
- Three plan-do-study-act (PDSA) cycles were employed, involving patient registration and collaboration with the birth registry and Obstetrics and Gynecology.
Main Results:
- Preintervention assessment showed 30% of NICU patients had missing or unknown race and ethnicity data.
- Following three PDSA cycles, the percentage of missing or unknown demographic information decreased to 10%.
Conclusions:
- A multidisciplinary, hospital-wide collaboration successfully decreased missing demographic data in a NICU.
- This initiative represents a foundational step toward implementing equity-focused quality improvement in neonatal care.
Objective:
There are significant racial and ethnic inequities in neonatal care and outcomes. Accurate race and ethnicity demographic information is the cornerstone of equity-focused quality improvement. The collection of accurate race and ethnicity demographic information is complex for neonates that cannot self-report and do not yet have personal identity formation. In a large, academic, level III neonatal intensive care unit (NICU), we implemented a quality improvement initiative aimed at increasing the completeness and accuracy of race and ethnicity demographic information in patient records.
Methods:
We conducted a quality improvement initiative using data from January 2021 to June 2025 among patients admitted to a large, academic, level III NICU. The primary goal was to reduce the percentage of missing or unknown racial and ethnic demographic information. Our study included a preintervention data quality assessment period followed by 3 plan-do-study-act (PDSA) cycles focused on patient registration and cross-departmental collaborations with the birth registry and the Department of Obstetrics and Gynecology.
Results:
During the preintervention data quality assessment, we demonstrated a steady state with 30% of patients admitted to the NICU having missing or unknown race and ethnicity demographic information. We observed 3 shifts associated with PDSA cycles. During the last PDSA cycle, the missing or unknown demographic information was 10%.
Conclusion:
We decreased the proportion of missing or unknown demographic data in a large, academic, level III NICU through a multidisciplinary hospital-wide collaboration. This initiative serves as the first step to implement equity-focused quality improvement.
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