Howell Rebecca, Allred Rachel, Betancourt Dayana, Yantz Caitlyn, Agopian A J, Shumate Charles
Texas Department of State Health Services, Birth Defects Epidemiology and Surveillance Branch (BDESB) and Texas Birth Defects Registry (TBDR).
Department of Epidemiology, University of Houston Health Science Center at Houston School of Public Health.
J Registry Manag. 2024 Fall;51(3):109-119.
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.
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.
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.
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.
自1999年以来，得克萨斯州出生缺陷登记处（TBDR）一直在得克萨斯州开展全州范围内的先天性异常主动监测。TBDR已制定质量保证程序和方案。为了用一种新方法补充这些现有程序，以主动识别影响数据质量的操作问题，我们试图开展一项调查，以识别程序和操作方面的挑战，并制定策略来减轻实践（如医院报告实践的变化）、外部事件（如大流行）以及其他可能影响数据质量的问题的影响。
设计了一份开放式、匿名调查问卷，并分发给TBDR工作人员。该调查收集了工作人员对TBDR运营、合作关系以及与外部医疗机构沟通方面的反馈。在第2年和第3年，调查问卷从9个问题缩减至3个问题。
第1年、第2年和第3年的完成率分别为45%、74%和49%。对这3年的主题分析确定了7个主要主题：（1）数据及时性，（2）数据质量改进，（3）工作流程优化，（4）基础培训需求，（5）专业或技术培训需求，（6）系统挑战，以及（7）内部沟通与协调。
该项目提供了一个概念验证，即主动监测出生缺陷登记处可以实时、系统地收集与数据质量相关的工作人员经验信息，并实施短期和长期策略来解决数据质量问题。调查结果促使进行内部战略规划、开展更多员工培训举措以及增强数据系统。需要开展更多工作来监测这些战略行动带来的长期改进。数据质量调查结果和实施的策略可能对其他监测项目有用。
