Center for Surveillance, Epidemiology, and Laboratory Services, Centers for Disease Control and Prevention, Atlanta.
Department of Health and Human Services, Melbourne, Australia.
Ann Epidemiol. 2021 Aug;60:35-44. doi: 10.1016/j.annepidem.2021.04.017. Epub 2021 May 6.
During the 2014-2016 Ebola outbreak in West Africa, the Sierra Leone Ministry of Health and Sanitation (MoHS), the US Centers for Disease Control and Prevention, and responding partners under the coordination of the National Ebola Response Center (NERC) and the MoHS's Emergency Operation Center (EOC) systematically recorded information from the 117 Call Center system and district alert phone lines, case investigations, laboratory sample testing, clinical management, and safe and dignified burial records. Since 2017, CDC assisted MoHS in building and managing the Sierra Leone Ebola Database (SLED) to consolidate these major data sources. The primary objectives of the project were helping families to identify the location of graves of their loved ones who died at the time of the Ebola epidemic through the SLED Family Reunification Program and creating a data source for epidemiological research. The objective of this paper is to describe the process of consolidating epidemic records into a useful and accessible data collection and to summarize data characteristics, strength, and limitations of this unique information source for public health research.
Because of the unprecedented conditions during the epidemic, most of the records collected from responding organizations required extensive processing before they could be used as a data source for research or the humanitarian purpose of locating burial sites. This process required understanding how the data were collected and used during the outbreak. To manage the complexity of processing the data obtained from various sources, the Sierra Leone Ebola Database (SLED) Team used an organizational strategy that allowed tracking of the data provenance and lifecycle.
The SLED project brought raw data into one consolidated data collection. It provides researchers with secure and ethical access to the SLED data and serves as a basis for the research capacity building in Sierra Leone. The SLED Family Reunification Program allowed Sierra Leonean families to identify location of the graves of loved ones who died during the Ebola epidemic.
The SLED project consolidated and utilized epidemic data recorded during the Sierra Leone Ebola Virus Disease outbreak that were collected and contributed to SLED by national and international organizations. This project has provided a foundation for developing a method of ethical and secure SLED data access while preserving the host nation's data ownership. SLED serves as a data source for the SLED Family Reunification Program and for epidemiological research. It presents an opportunity for building research capacity in Sierra Leone and provides a foundation for developing a relational database. Large outbreak data systems such as SLED provide a unique opportunity for researchers to improve responses to epidemics and indicate the need to include data management preparedness in the plans for emergency response.
在 2014-2016 年西非埃博拉疫情期间，塞拉利昂卫生部和公共卫生部（MoHS）、美国疾病控制与预防中心（CDC）以及在国家埃博拉应对中心（NERC）和 MoHS 的应急行动中心（EOC）协调下的应对伙伴组织系统地记录了来自 117 呼叫中心系统和地区警戒电话线路、病例调查、实验室样本检测、临床管理和安全有尊严的埋葬记录中的信息。自 2017 年以来，CDC 协助 MoHS 建立和管理塞拉利昂埃博拉数据库（SLED），以整合这些主要数据源。该项目的主要目标是通过 SLED 家庭团聚计划帮助家属找到在埃博拉疫情期间去世的亲人的墓地位置，并为流行病学研究创建一个数据源。本文的目的是描述将疫情记录整合到有用且易于访问的数据集中的过程，并总结这一独特信息来源在公共卫生研究方面的数据特点、优势和局限性。
由于疫情期间的特殊情况，大多数从应对组织收集的记录在被用作研究或寻找埋葬地点的人道主义目的的数据来源之前，都需要进行大量的处理。这一过程需要了解数据在疫情期间是如何收集和使用的。为了管理从各种来源获取的数据处理的复杂性，塞拉利昂埃博拉数据库（SLED）团队使用了一种组织策略，允许跟踪数据的来源和生命周期。
SLED 项目将原始数据纳入一个统一的数据集中。它为研究人员提供了安全和合乎道德的 SLED 数据访问权限，并为塞拉利昂的研究能力建设提供了基础。SLED 家庭团聚计划使塞拉利昂家庭能够确定在埃博拉疫情期间去世的亲人的墓地位置。
SLED 项目整合并利用了国家和国际组织为 SLED 收集和提供的塞拉利昂埃博拉病毒病疫情期间记录的疫情数据。该项目为开发一种安全和合乎道德的 SLED 数据访问方法奠定了基础，同时保留了宿主国的数据所有权。SLED 既是 SLED 家庭团聚计划的数据源，也是流行病学研究的数据源。它为塞拉利昂的研究能力建设提供了机会，并为开发关系型数据库奠定了基础。SLED 等大型疫情数据系统为研究人员提供了一个独特的机会，以改善对疫情的应对，并表明有必要在应急响应计划中纳入数据管理准备。
