Finding the graves: SLED Family Reunification Program.

PURPOSE: In 2015, the Sierra Leone Ministry of Health and Sanitation (MoHS) and the Centers for Disease Control and Prevention (CDC) agreed to consolidate data recorded by MoHS and international partners during the Ebola epidemic and create the Sierra Leone Ebola Database (SLED). The primary objectives were helping families to identify the location of graves of their loved ones who died from any cause at the time of the Ebola epidemic and creating a data source for epidemiological research. The Family Reunification Program fulfills the first SLED objective. The purpose of this paper is to describe the Family Reunification Program (Program) development, functioning, and results. METHODS: The MoHS, CDC, SLED Team, and Concern Worldwide developed, tested, and implemented methodology and tools to conduct the Program. Family liaisons were trained in protection of the personally identifiable information. RESULTS: The SLED Family Reunification Program allows families in Sierra Leone, who did not know the final resting place of their loved ones, to be reunited with their graves and to bring them relief and closure. CONCLUSION: Continuing family requests in search of the burial place of loved ones 5 years after the end of the epidemic shows that the emotional burden of losing a family member and not knowing the place of burial does not diminish with time. As of February 2021, the Program continues and is described to allow its replication for other emergency events including COVID-19 and new Ebola outbreaks.

Building the Sierra Leone Ebola Database: organization and characteristics of data systematically collected during 2014-2015 Ebola epidemic.

PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Ensuring ethical data access: the Sierra Leone Ebola Database (SLED) model.

PURPOSE: Organizations responding to the 2014-2016 Ebola epidemic in Sierra Leone collected information from multiple sources and kept it in separate databases, including distinct data systems for Ebola hot line calls, patient information collected by field surveillance officers, laboratory testing results, clinical information from Ebola treatment and isolation facilities, and burial team records. METHODS: After the conclusion of the epidemic, the Sierra Leone Ministry of Health and Sanitation and the U.S. Centers for Disease Control and Prevention partnered to collect these disparate records and consolidate them in the Sierra Leone Ebola Database. RESULTS: The Sierra Leone Ebola Database data are providing a lasting resource for postepidemic data analysis and epidemiologic research, including identifying best strategies in outbreak response, and are used to help families locate the graves of family members who died during the epidemic. CONCLUSION: This report describes the Ministry of Health and Sanitation and Centers for Disease Control and Prevention processes to safeguard Ebola records while making the data available for public health research.