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Data Sharing in Public Health Emergencies- Yellow Fever And Data Sharing in Public Health Emergencies: Anthropological and Historical Perspectives on Data Sharing during the 2014-2016 Ebola Epidemic and the 2016 Yellow Fever Epidemic Final Report Submission date: November 26, 2018 Research Team: Sharon Abramowitz, Independent anthropologist Tamara Giles-Vernick, Institut Pasteur Jim Webb, Colby College [emeritus] Jennifer Tappan, Portland State University Elanah Uretsky, Brandeis University Jorge Varanda-Ferreira, University of Coimbra Katherine Mason, Brown University Molly Beyer, University of North Texas Claire Collin, London School of Hygiene and Tropical Medicine Amadou Sall, Institut Pasteur-Dakar 1 I. STUDY DETAILS Principal Investigator; Study coordinator Sharon Abramowitz [email protected] Co-Principal Investigator; Supplier Tamara Giles-Vernick [email protected] Funder Alice Jamieson Wellcome Trust 215 Euston Road, London NW1 2BE +44 (0) 20 7611 8446 [email protected] Through the Wellcome-DfID joint initiative on epidemic preparedness Institut Pasteur Ethics Committee IRB2018-07 Protocol Key words Yellow fever virus (YFV), ebola virus disease (EVD), data sharing, open access, epidemic, preparedness, response, case study, public health emergency 2 II. ACKNOWLEDGEMENTS We thank Wellcome-DfID joint initiative on epidemic preparedness for its generous financial support. We thank the Wellcome Trust, the U.K. Department for International Development, and particularly Alice Jamieson, Katherine Littler, and Lenio Capsaskis for the opportunity to investigate these case studies and for their stimulating questions, and Helena Wilcox for her support. Our thanks, too, to the Institut Pasteur for its support of this project and particularly Marie- Laurence Meignan for her valuable administrative help. Katherina Thomas provided invaluable and rapid transcription of our interviews, which we truly appreciate. Finally, we are grateful to all those who patiently and frankly responded to our questions. This work was funded through the Wellcome-DfID joint initiative on epidemic preparedness and does not represented the views of the funders. 3 Table of Contents I. STUDY DETAILS .............................................................................................................................................. 2 II. ACKNOWLEDGEMENTS ............................................................................................................................... 3 III. ABBREVIATIONS ........................................................................................................................................ 5 IV. SUMMARY: DATA SHARING DURING EPIDEMICS .......................................................................... 6 A. Executive Summary .......................................................................................................................................... 6 B. Key Findings .................................................................................................................................................... 9 C. What are data in a public health emergency? ............................................................................................... 13 D. What is sharing during a public health emergency? ..................................................................................... 15 E. Data Sharing During Public Health Emergencies: Histories and Precedents .............................................. 16 F. Data Sharing: A Comparison of the Cases .................................................................................................... 22 G. PEARLES ....................................................................................................................................................... 23 H. Ethics .............................................................................................................................................................. 28 I. Lessons learned: How could more data sharing have helped? ..................................................................... 32 J. Who is Responsible? ...................................................................................................................................... 33 K. Our Approach ................................................................................................................................................ 34 V. CASE STUDY: YELLOW FEVER EPIDEMIC 2016 .................................................................................. 36 A. Summary ........................................................................................................................................................ 36 B. Yellow Fever: A Historical Overview ............................................................................................................ 36 C. Yellow Fever Epidemic in Angola and Democratic Republic of Congo (2016) ............................................ 39 D. Data sharing during the Angola-DRC-China Yellow Fever epidemic .......................................................... 40 E. Post-epidemic data sharing ........................................................................................................................... 55 F. Key barriers and facilitators to data sharing ................................................................................................ 57 VI. CASE STUDY: WEST AFRICA EBOLAVIRUS EPIDEMIC 2014-2016 ............................................. 67 A. Summary ........................................................................................................................................................ 67 B. Ebolavirus disease: A Historical Overview ................................................................................................... 68 C. West Africa Ebola epidemic (2014-2016) ...................................................................................................... 71 D. China’s Response to Ebola in West Africa .................................................................................................... 74 E. Data Sharing during the West Africa Ebola Epidemic .................................................................................. 75 F. Post-Ebola Data Sharing ............................................................................................................................. 100 G. Key barriers and facilitators to data sharing .............................................................................................. 103 VII. WORKS CITED ........................................................................................................................................ 108 4 III. ABBREVIATIONS (DRC) Democratic Republic of the Congo (EVD) Ebola virus disease (ETC/ETU) Ebola Treatment Center, Ebola Treatment Unit (EOC) Emergency Operations Center (ERF) Emergency Response Framework (ECDC) European CDC (IMS) Incident Management System (INSP) Instituto Nacional de Saúde Publica, Angola (IHR) International Health Regulations (LMIC) Low- and middle-income countries (MSF) Médècins Sans Frontières (MINSA) Ministério de Saúde, Angola (MOH/MOHS) Ministry of Health, alt. Ministry of Health and Sanitation (PHEIC) Public Health Emergency of International Concern (US CDC) U.S. Centers for Disease Control (WHO) World Health Organization (YFV) Yellow fever virus 5 IV. SUMMARY: DATA SHARING DURING EPIDEMICS A. Executive Summary The EVD and YFV epidemics demonstrated two radically different models for data sharing during epidemic response - a routine data sharing environment, as compared to an extraordinary event classified as a Public Health Emergency of International Concern. Business as Usual vs. PHEIC In our analysis, the YFV epidemic of 2016 that affected Angola, the Democratic Republic of the Congo, and China constituted a case of “business as usual” in epidemic response, with the routine stakeholders frequently engaged in disease outbreaks in LMIC countries (see Table 1). During the YFV outbreak, data access was strictly regulated by government authorities. WHO actors were able to mobilize informal persuasive measures to gain access to data, but they had little authority to circulate that data beyond their own carefully constricted inner circle of data stakeholders (ex. WHO Collaborating Centers, response partners), and even within that circle, implementing partners had inconsistent access to data. Countries with close bilateral relationships with the national governments – like Cuba and Angola - were able to gain access to data by leveraging long histories of public health response partnerships that bypassed routine mechanisms of information coordination for outbreak response. In contrast, the West Africa EVD epidemic of 2014-2016 constituted a critical moment in global health history. The epidemic, which was declared a Public Health Emergency of International Concern (PHEIC) in 2014, mainly affected Liberia, Guinea, and Sierra Leone, but also resulted in smaller outbreaks in Senegal, Mali, Nigeria, and several European and North American countries. Prior to the PHEIC declaration on August 8, 2014, data sharing in the EVD epidemic was characterized by the engagement of data stakeholders that typified routine epidemic response activities. Data sharing was restricted to stakeholders who were regarded as relevant for operational response, and access to data was deeply restricted and shaped by pre-existing governmental and institutional arrangements. However, in the EVD epidemic,
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