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Challenges of data sharing in European Covid-19 projects: A learning opportunity for advancing pandemic preparedness and response
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...
Autores principales: | , , , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Elsevier
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9351292/ https://www.ncbi.nlm.nih.gov/pubmed/35942201 http://dx.doi.org/10.1016/j.lanepe.2022.100467 |
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author | Tacconelli, Evelina Gorska, Anna Carrara, Elena Davis, Ruth Joanna Bonten, Marc Friedrich, Alex W. Glasner, Corinna Goossens, Herman Hasenauer, Jan Abad, Josep Maria Haro Peñalvo, José L. Sanchez-Niubo, Albert Sialm, Anastassja Scipione, Gabriella Soriano, Gloria Yazdanpanah, Yazdan Vorstenbosch, Ellen Jaenisch, Thomas |
author_facet | Tacconelli, Evelina Gorska, Anna Carrara, Elena Davis, Ruth Joanna Bonten, Marc Friedrich, Alex W. Glasner, Corinna Goossens, Herman Hasenauer, Jan Abad, Josep Maria Haro Peñalvo, José L. Sanchez-Niubo, Albert Sialm, Anastassja Scipione, Gabriella Soriano, Gloria Yazdanpanah, Yazdan Vorstenbosch, Ellen Jaenisch, Thomas |
author_sort | Tacconelli, Evelina |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-9351292 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | Elsevier |
record_format | MEDLINE/PubMed |
spelling | pubmed-93512922022-08-04 Challenges of data sharing in European Covid-19 projects: A learning opportunity for advancing pandemic preparedness and response Tacconelli, Evelina Gorska, Anna Carrara, Elena Davis, Ruth Joanna Bonten, Marc Friedrich, Alex W. Glasner, Corinna Goossens, Herman Hasenauer, Jan Abad, Josep Maria Haro Peñalvo, José L. Sanchez-Niubo, Albert Sialm, Anastassja Scipione, Gabriella Soriano, Gloria Yazdanpanah, Yazdan Vorstenbosch, Ellen Jaenisch, Thomas Lancet Reg Health Eur Viewpoint 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. Elsevier 2022-08-04 /pmc/articles/PMC9351292/ /pubmed/35942201 http://dx.doi.org/10.1016/j.lanepe.2022.100467 Text en © 2022 The Authors https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). |
spellingShingle | Viewpoint Tacconelli, Evelina Gorska, Anna Carrara, Elena Davis, Ruth Joanna Bonten, Marc Friedrich, Alex W. Glasner, Corinna Goossens, Herman Hasenauer, Jan Abad, Josep Maria Haro Peñalvo, José L. Sanchez-Niubo, Albert Sialm, Anastassja Scipione, Gabriella Soriano, Gloria Yazdanpanah, Yazdan Vorstenbosch, Ellen Jaenisch, Thomas Challenges of data sharing in European Covid-19 projects: A learning opportunity for advancing pandemic preparedness and response |
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 | Viewpoint |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9351292/ https://www.ncbi.nlm.nih.gov/pubmed/35942201 http://dx.doi.org/10.1016/j.lanepe.2022.100467 |
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