Ensuring Ethical Data Access: The Sierra Leone Ebola Database (SLED) Model

Abstract Background 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 Following the conclusion of the epidemic, the Sierra Leone Ministry of Health and Sanitation (MoHS) and United States Centers for Disease Control and Prevention (CDC) partnered to collect these disparate records and consolidate them in the Sierra Leone Ebola Database (SLED). Results The SLED data will be used to provide a lasting resource for post-epidemic data analysis and epidemiologic research, including identifying best strategies in outbreak response, and to help families locate the graves of family members who died during the epidemic. Conclusion This report describes MoHS and CDC processes to safeguard Ebola records while making the data available for public health research.