Enhancing Data Quality in a Statewide Birth Defects Registry: Insights from an Ongoing Quality Improvement Initiative.

Background: Since 1999, the Texas Birth Defects Registry (TBDR) has conducted active statewide surveillance of congenital anomalies in Texas. The TBDR has established quality assurance procedures and protocols. With the aim of supplementing these existing procedures with a new approach to proactively identify operational issues impacting data quality, we sought to implement a survey to identify procedural and operational challenges and develop strategies to mitigate the effects of practices (eg, changes in reporting practices at hospitals), external events (eg, pandemics), and other issues that may impact data quality. Methods: An open-text, anonymous survey was developed and distributed to TBDR staff. The survey elicited responses from staff related to TBDR operations, partnerships, and communication with external health care facilities. In years 2 and 3, the survey was abbreviated from 9 to 3 questions. Results: Completion rates were 45%, 74%, and 49% in years 1, 2, and 3, respectively. Thematic analysis across all 3 years identified 7 primary themes: (1) data timeliness, (2) data quality improvements, (3) workflow optimization, (4) fundamental training needs, (5) specialized or technical training needs, (6) system challenges, and (7) internal communication and coordination. Conclusions: This project provides a proof-of-concept that active surveillance birth defects registries can collect information on data quality-related staff experiences in a real-time, systematic manner and implement short- and long-term strategies to address data quality. The survey results prompted internal strategic planning, additional employee training initiatives, and data system enhancements. Additional work is needed to monitor the long-term improvements resulting from these strategic actions. The data quality survey results and implemented strategies may be useful to other surveillance programs.