Cargando…

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...

Descripción completa

Detalles Bibliográficos
Autores principales: 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
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Elsevier 2022
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
_version_ 1784762413297434624
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
work_keys_str_mv AT tacconellievelina challengesofdatasharingineuropeancovid19projectsalearningopportunityforadvancingpandemicpreparednessandresponse
AT gorskaanna challengesofdatasharingineuropeancovid19projectsalearningopportunityforadvancingpandemicpreparednessandresponse
AT carraraelena challengesofdatasharingineuropeancovid19projectsalearningopportunityforadvancingpandemicpreparednessandresponse
AT davisruthjoanna challengesofdatasharingineuropeancovid19projectsalearningopportunityforadvancingpandemicpreparednessandresponse
AT bontenmarc challengesofdatasharingineuropeancovid19projectsalearningopportunityforadvancingpandemicpreparednessandresponse
AT friedrichalexw challengesofdatasharingineuropeancovid19projectsalearningopportunityforadvancingpandemicpreparednessandresponse
AT glasnercorinna challengesofdatasharingineuropeancovid19projectsalearningopportunityforadvancingpandemicpreparednessandresponse
AT goossensherman challengesofdatasharingineuropeancovid19projectsalearningopportunityforadvancingpandemicpreparednessandresponse
AT hasenauerjan challengesofdatasharingineuropeancovid19projectsalearningopportunityforadvancingpandemicpreparednessandresponse
AT abadjosepmariaharo challengesofdatasharingineuropeancovid19projectsalearningopportunityforadvancingpandemicpreparednessandresponse
AT penalvojosel challengesofdatasharingineuropeancovid19projectsalearningopportunityforadvancingpandemicpreparednessandresponse
AT sanchezniuboalbert challengesofdatasharingineuropeancovid19projectsalearningopportunityforadvancingpandemicpreparednessandresponse
AT sialmanastassja challengesofdatasharingineuropeancovid19projectsalearningopportunityforadvancingpandemicpreparednessandresponse
AT scipionegabriella challengesofdatasharingineuropeancovid19projectsalearningopportunityforadvancingpandemicpreparednessandresponse
AT sorianogloria challengesofdatasharingineuropeancovid19projectsalearningopportunityforadvancingpandemicpreparednessandresponse
AT yazdanpanahyazdan challengesofdatasharingineuropeancovid19projectsalearningopportunityforadvancingpandemicpreparednessandresponse
AT vorstenboschellen challengesofdatasharingineuropeancovid19projectsalearningopportunityforadvancingpandemicpreparednessandresponse
AT jaenischthomas challengesofdatasharingineuropeancovid19projectsalearningopportunityforadvancingpandemicpreparednessandresponse