Challenges of data sharing in European Covid-19 projects: A learning opportunity for advancing pandemic preparedness and response
Summary: The COVID-19 pandemic saw a massive investment into collaborative research projects with a focus on producing data to support public health decisions. We relay our direct experience of four projects funded under the Horizon2020 programme, namely ReCoDID, ORCHESTRA, unCoVer and SYNCHROS. The...
| Main Authors: | , , , , , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Elsevier
2022-10-01
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| Series: | The Lancet Regional Health. Europe |
| Subjects: | |
| Online Access: | http://www.sciencedirect.com/science/article/pii/S2666776222001636 |
| _version_ | 1828186879826067456 |
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| author | Evelina Tacconelli Anna Gorska Elena Carrara Ruth Joanna Davis Marc Bonten Alex W. Friedrich Corinna Glasner Herman Goossens Jan Hasenauer Josep Maria Haro Abad José L. Peñalvo Albert Sanchez-Niubo Anastassja Sialm Gabriella Scipione Gloria Soriano Yazdan Yazdanpanah Ellen Vorstenbosch Thomas Jaenisch |
| author_facet | Evelina Tacconelli Anna Gorska Elena Carrara Ruth Joanna Davis Marc Bonten Alex W. Friedrich Corinna Glasner Herman Goossens Jan Hasenauer Josep Maria Haro Abad José L. Peñalvo Albert Sanchez-Niubo Anastassja Sialm Gabriella Scipione Gloria Soriano Yazdan Yazdanpanah Ellen Vorstenbosch Thomas Jaenisch |
| author_sort | Evelina Tacconelli |
| collection | DOAJ |
| description | Summary: The COVID-19 pandemic saw a massive investment into collaborative research projects with a focus on producing data to support public health decisions. We relay our direct experience of four projects funded under the Horizon2020 programme, namely ReCoDID, ORCHESTRA, unCoVer and SYNCHROS. The projects provide insight into the complexities of sharing patient level data from observational cohorts. We focus on compliance with the General Data Protection Regulation (GDPR) and ethics approvals when sharing data across national borders. We discuss procedures for data mapping; submission of new international codes to standards organisation; federated approach; and centralised data curation. Finally, we put forward recommendations for the development of guidelines for the application of GDPR in case of major public health threats; mandatory standards for data collection in funding frameworks; training and capacity building for data owners; cataloguing of international use of metadata standards; and dedicated funding for identified critical areas. |
| first_indexed | 2024-04-12T07:26:23Z |
| format | Article |
| id | doaj.art-aa2020a5621b4b6b9203120d1f9bd96e |
| institution | Directory Open Access Journal |
| issn | 2666-7762 |
| language | English |
| last_indexed | 2024-04-12T07:26:23Z |
| publishDate | 2022-10-01 |
| publisher | Elsevier |
| record_format | Article |
| series | The Lancet Regional Health. Europe |
| spelling | doaj.art-aa2020a5621b4b6b9203120d1f9bd96e2022-12-22T03:42:12ZengElsevierThe Lancet Regional Health. Europe2666-77622022-10-0121100467Challenges of data sharing in European Covid-19 projects: A learning opportunity for advancing pandemic preparedness and responseEvelina Tacconelli0Anna Gorska1Elena Carrara2Ruth Joanna Davis3Marc Bonten4Alex W. Friedrich5Corinna Glasner6Herman Goossens7Jan Hasenauer8Josep Maria Haro Abad9José L. Peñalvo10Albert Sanchez-Niubo11Anastassja Sialm12Gabriella Scipione13Gloria Soriano14Yazdan Yazdanpanah15Ellen Vorstenbosch16Thomas Jaenisch17Infectious Diseases Division, Department of Diagnostics and Public Health, University of Verona, Verona, Italy; Corresponding author at: University of Verona: Universita degli Studi di Verona, Diagnostics and Public Health, Piazzale Ludovico Antonio Scuro n.10, 37134 Verona, Italy.Infectious Diseases Division, Department of Diagnostics and Public Health, University of Verona, Verona, ItalyInfectious Diseases Division, Department of Diagnostics and Public Health, University of Verona, Verona, ItalyInfectious Diseases Division, Department of Diagnostics and Public Health, University of Verona, Verona, ItalyJulius Center for Health Sciences and Primary Care, University Medical Center Utrecht, NetherlandsDepartment of Medical Microbiology and Infection Prevention, University of Groningen, University Medical Center Groningen, Groningen, the Netherlands; University Hospital Münster, Münster, GermanyDepartment of Medical Microbiology and Infection Prevention, University of Groningen, University Medical Center Groningen, Groningen, the NetherlandsLaboratory of Medical Microbiology, Vaccine and Infectious Diseases Institute, University of Antwerp, Antwerp, BelgiumLife and Medical Sciences Institute, University of Bonn, Bonn, Germany; Institute of Computational Biology, Helmholtz Center Munich - German Research Center for Environmental Health, Neuherberg, GermanyCIBER en Salud Mental (CIBERSAM). Instituto de Salud Carlos III, Madrid, Spain; Parc Sanitari Sant Joan de Déu, Sant Boi de Llobregat, SpainDepartment of Public Health, Institute of Tropical Medicine, Antwerp, BelgiumCIBER en Salud Mental (CIBERSAM). Instituto de Salud Carlos III, Madrid, Spain; Department of Social Psychology and Quantitative Psychology. Faculty of Psychology, University of Barcelona, Barcelona, SpainSchweizer Paraplegiker Forschung, Nottwil, SwitzerlandSupercomputing Applications and Innovation Department, Cineca Consorzio Interuniversitario, 40033 Casalecchio di Reno, ItalyDepartment of Public Health, Institute of Tropical Medicine, Antwerp, BelgiumINSERM, IAME, Hôpital Bichat - Claude-Bernard, Infectious Diseases Department, FranceCIBER en Salud Mental (CIBERSAM). Instituto de Salud Carlos III, Madrid, Spain; Parc Sanitari Sant Joan de Déu, Sant Boi de Llobregat, SpainHeidelberg Institute of Global Health, Heidelberg University Hospital, Heidelberg, GermanySummary: The COVID-19 pandemic saw a massive investment into collaborative research projects with a focus on producing data to support public health decisions. We relay our direct experience of four projects funded under the Horizon2020 programme, namely ReCoDID, ORCHESTRA, unCoVer and SYNCHROS. The projects provide insight into the complexities of sharing patient level data from observational cohorts. We focus on compliance with the General Data Protection Regulation (GDPR) and ethics approvals when sharing data across national borders. We discuss procedures for data mapping; submission of new international codes to standards organisation; federated approach; and centralised data curation. Finally, we put forward recommendations for the development of guidelines for the application of GDPR in case of major public health threats; mandatory standards for data collection in funding frameworks; training and capacity building for data owners; cataloguing of international use of metadata standards; and dedicated funding for identified critical areas.http://www.sciencedirect.com/science/article/pii/S2666776222001636Data sharingGeneral Data Protection RegulationSARS-CoV-2Cohort studyPreparedenessPandemic |
| spellingShingle | Evelina Tacconelli Anna Gorska Elena Carrara Ruth Joanna Davis Marc Bonten Alex W. Friedrich Corinna Glasner Herman Goossens Jan Hasenauer Josep Maria Haro Abad José L. Peñalvo Albert Sanchez-Niubo Anastassja Sialm Gabriella Scipione Gloria Soriano Yazdan Yazdanpanah Ellen Vorstenbosch Thomas Jaenisch Challenges of data sharing in European Covid-19 projects: A learning opportunity for advancing pandemic preparedness and response The Lancet Regional Health. Europe Data sharing General Data Protection Regulation SARS-CoV-2 Cohort study Preparedeness Pandemic |
| title | Challenges of data sharing in European Covid-19 projects: A learning opportunity for advancing pandemic preparedness and response |
| title_full | Challenges of data sharing in European Covid-19 projects: A learning opportunity for advancing pandemic preparedness and response |
| title_fullStr | Challenges of data sharing in European Covid-19 projects: A learning opportunity for advancing pandemic preparedness and response |
| title_full_unstemmed | Challenges of data sharing in European Covid-19 projects: A learning opportunity for advancing pandemic preparedness and response |
| title_short | Challenges of data sharing in European Covid-19 projects: A learning opportunity for advancing pandemic preparedness and response |
| title_sort | challenges of data sharing in european covid 19 projects a learning opportunity for advancing pandemic preparedness and response |
| topic | Data sharing General Data Protection Regulation SARS-CoV-2 Cohort study Preparedeness Pandemic |
| url | http://www.sciencedirect.com/science/article/pii/S2666776222001636 |
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