Karki Saugat, Weiss Adam, Dcruz Jina, Hunt Dorothy, Haigood Brandon, Ouakou Philip Tchindebet, Chop Elisabeth, Zirimwabagabo Hubert, Rubenstein Beth L, Yerian Sarah, Roy Sharon L, Kamb Mary L, Guagliardo Sarah Anne J
Surveillance and Data Management Branch, Division of STD Prevention, Centers for Disease Control and Prevention, Atlanta, Georgia, United States of America.
Guinea Worm Eradication Program, The Carter Center, Atlanta, Georgia, United States of America.
PLoS Negl Trop Dis. 2021 Aug 9;15(8):e0009675. doi: 10.1371/journal.pntd.0009675. eCollection 2021 Aug.
In the absence of a vaccine or pharmacological treatment, prevention and control of Guinea worm disease is dependent on timely identification and containment of cases to interrupt transmission. The Chad Guinea Worm Eradication Program (CGWEP) surveillance system detects and monitors Guinea worm disease in both humans and animals. Although Guinea worm cases in humans has declined, the discovery of canine infections in dogs in Chad has posed a significant challenge to eradication efforts. A foundational information system that supports the surveillance activities with modern data management practices is needed to support continued program efficacy.
We sought to assess the current CGWEP surveillance and information system to identify gaps and redundancies and propose system improvements. We reviewed documentation, consulted with subject matter experts and stakeholders, inventoried datasets to map data elements and information flow, and mapped data management processes. We used the Information Value Cycle (IVC) and Data-Information System-Context (DISC) frameworks to help understand the information generated and identify gaps.
Findings from this study identified areas for improvement, including the need for consolidation of forms that capture the same demographic variables, which could be accomplished with an electronic data capture system. Further, the mental models (conceptual frameworks) IVC and DISC highlighted the need for more detailed, standardized workflows specifically related to information management.
Based on these findings, we proposed a four-phased roadmap for centralizing data systems and transitioning to an electronic data capture system. These included: development of a data governance plan, transition to electronic data entry and centralized data storage, transition to a relational database, and cloud-based integration. The method and outcome of this assessment could be used by other neglected tropical disease programs looking to transition to modern electronic data capture systems.
在缺乏疫苗或药物治疗的情况下，几内亚蠕虫病的预防和控制依赖于及时发现并控制病例以中断传播。乍得几内亚蠕虫根除计划（CGWEP）监测系统可检测和监测人类和动物中的几内亚蠕虫病。尽管人类中的几内亚蠕虫病例有所减少，但乍得犬类感染的发现对根除工作构成了重大挑战。需要一个通过现代数据管理实践来支持监测活动的基础信息系统，以确保该计划持续有效。
我们试图评估当前的CGWEP监测和信息系统，以识别差距和冗余之处，并提出系统改进建议。我们审查了文档，咨询了主题专家和利益相关者，盘点了数据集以绘制数据元素和信息流，并绘制了数据管理流程。我们使用信息价值循环（IVC）和数据-信息系统-背景（DISC）框架来帮助理解所生成的信息并识别差距。
本研究的结果确定了需要改进的领域，包括需要整合收集相同人口统计学变量的表格，这可以通过电子数据捕获系统来实现。此外，心智模型（概念框架）IVC和DISC强调了需要更详细、标准化的与信息管理相关的工作流程。
基于这些发现，我们提出了一个分四个阶段的路线图，用于集中数据系统并过渡到电子数据捕获系统。这些阶段包括：制定数据治理计划、过渡到电子数据录入和集中数据存储、过渡到关系数据库以及基于云的集成。其他希望过渡到现代电子数据捕获系统的被忽视热带病项目可以使用此评估的方法和结果。
