Literature DB >> 32532366

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

Yelena Gorina1, John T Redd2, Sara Hersey3, Amara Jambai4, Peter Meyer5, Ansumana S Kamara6, Alimamy Kamara7, Jadnah D Harding8, Brima Bangura8, Mohamed A M Kamara8.   

Abstract

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. Published by Elsevier Inc.

Entities:  

Keywords:  Data access; Data ownership; Data sharing; Ebola virus disease; Ethics; Privacy; SLED; Sierra Leone Ebola database

Mesh:

Year:  2020        PMID: 32532366      PMCID: PMC7443172          DOI: 10.1016/j.annepidem.2020.04.001

Source DB:  PubMed          Journal:  Ann Epidemiol        ISSN: 1047-2797            Impact factor:   3.797


  15 in total

1.  Who owns the information? Who has the power?

Authors:  Sally Stansfield
Journal:  Bull World Health Organ       Date:  2008-03       Impact factor: 9.408

Review 2.  The Ethics of Big Data: Current and Foreseeable Issues in Biomedical Contexts.

Authors:  Brent Daniel Mittelstadt; Luciano Floridi
Journal:  Sci Eng Ethics       Date:  2015-05-23       Impact factor: 3.525

3.  International comparisons of health system performance among OECD countries: opportunities and data privacy protection challenges.

Authors:  Jillian Oderkirk; Elettra Ronchi; Niek Klazinga
Journal:  Health Policy       Date:  2013-07-16       Impact factor: 2.980

4.  Ebola Surveillance - Guinea, Liberia, and Sierra Leone.

Authors:  Lucy A McNamara; Ilana J Schafer; Leisha D Nolen; Yelena Gorina; John T Redd; Terrence Lo; Elizabeth Ervin; Olga Henao; Benjamin A Dahl; Oliver Morgan; Sara Hersey; Barbara Knust
Journal:  MMWR Suppl       Date:  2016-07-08

5.  Improving burial practices and cemetery management during an Ebola virus disease epidemic - Sierra Leone, 2014.

Authors:  Carrie F Nielsen; Sarah Kidd; Ansumana R M Sillah; Edward Davis; Jonathan Mermin; Peter H Kilmarx
Journal:  MMWR Morb Mortal Wkly Rep       Date:  2015-01-16       Impact factor: 17.586

Review 6.  Who Owns the Data? Open Data for Healthcare.

Authors:  Patty Kostkova; Helen Brewer; Simon de Lusignan; Edward Fottrell; Ben Goldacre; Graham Hart; Phil Koczan; Peter Knight; Corinne Marsolier; Rachel A McKendry; Emma Ross; Angela Sasse; Ralph Sullivan; Sarah Chaytor; Olivia Stevenson; Raquel Velho; John Tooke
Journal:  Front Public Health       Date:  2016-02-17

7.  Best practices for sharing information through data platforms: establishing the principles.

Authors:  Vasee S Moorthy; Cathy Roth; Piero Olliaro; Christopher Dye; Marie Paule Kieny
Journal:  Bull World Health Organ       Date:  2016-04-01       Impact factor: 9.408

Review 8.  Developing Global Norms for Sharing Data and Results during Public Health Emergencies.

Authors:  Kayvon Modjarrad; Vasee S Moorthy; Piers Millett; Pierre-Stéphane Gsell; Cathy Roth; Marie-Paule Kieny
Journal:  PLoS Med       Date:  2016-01-05       Impact factor: 11.069

9.  Ebola Response Impact on Public Health Programs, West Africa, 2014-2017.

Authors:  Barbara J Marston; E Kainne Dokubo; Amanda van Steelandt; Lise Martel; Desmond Williams; Sara Hersey; Amara Jambai; Sakoba Keita; Tolbert G Nyenswah; John T Redd
Journal:  Emerg Infect Dis       Date:  2017-12       Impact factor: 6.883

10.  Will Ebola change the game? Ten essential reforms before the next pandemic. The report of the Harvard-LSHTM Independent Panel on the Global Response to Ebola.

Authors:  Suerie Moon; Devi Sridhar; Muhammad A Pate; Ashish K Jha; Chelsea Clinton; Sophie Delaunay; Valnora Edwin; Mosoka Fallah; David P Fidler; Laurie Garrett; Eric Goosby; Lawrence O Gostin; David L Heymann; Kelley Lee; Gabriel M Leung; J Stephen Morrison; Jorge Saavedra; Marcel Tanner; Jennifer A Leigh; Benjamin Hawkins; Liana R Woskie; Peter Piot
Journal:  Lancet       Date:  2015-11-23       Impact factor: 79.321

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  1 in total

Review 1.  R&D during public health emergencies: the value(s) of trust, governance and collaboration.

Authors:  Rachel Alberta Katz; Fabio Salamanca-Buentello; Diego S Silva; Ross Eg Upshur; Maxwell J Smith
Journal:  BMJ Glob Health       Date:  2022-03
  1 in total

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