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

Details

• Alternative Title:
  Ann Epidemiol
• Personal Author:
  Gorina, Yelena ; Redd, John T. ; Hersey, Sara ; Jambai, Amara ; Meyer, Peter ; Kamara, Ansumana S. ; Kamara, Alimamy ; Harding, Jadnah D. ; Bangura, Brima ; Kamara, Mohamed A.M.
• Description:
  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.
  
  
• Keywords:
  Data Access Data Management Data Ownership Data Sharing Disease Outbreaks Ebola Virus Disease Epidemics Ethics Hemorrhagic Fever, Ebola Humans Information Dissemination Information Storage And Retrieval Privacy Public Health Sierra Leone Sierra Leone Ebola Database SLED

  More +
• Source:
  Ann Epidemiol. 46:1-4
• Pubmed ID:
  32532366
• Pubmed Central ID:
  PMC7443172
• Document Type:
  Journal Article
• Funding:
  CC999999/ImCDC/Intramural CDC HHSUnited States/
• Volume:
  46
• Collection(s):
  CDC Public Access
• Main Document Checksum:
  urn:sha256:bd8b9cedaaaede51365572873fef86f01abf887813d9ccbce30dbc029a998bb0
• Download URL:
  https://stacks.cdc.gov/view/cdc/92346/cdc_92346_DS1.pdf
• File Type:
  [PDF - 178.76 KB ]