TY - JOUR
T1 - Challenges of data sharing in European Covid-19 projects
T2 - A learning opportunity for advancing pandemic preparedness and response
AU - Tacconelli, Evelina
AU - Gorska, Anna
AU - Carrara, Elena
AU - Davis, Ruth Joanna
AU - Bonten, Marc
AU - Friedrich, Alex W
AU - Glasner, Corinna
AU - Goossens, Herman
AU - Hasenauer, Jan
AU - Abad, Josep Maria Haro
AU - Peñalvo, José L
AU - Sanchez-Niubo, Albert
AU - Sialm, Anastassja
AU - Scipione, Gabriella
AU - Soriano, Gloria
AU - Yazdanpanah, Yazdan
AU - Vorstenbosch, Ellen
AU - Jaenisch, Thomas
N1 - © 2022 The Authors.
PY - 2022/10
Y1 - 2022/10
N2 - 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.
AB - 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.
U2 - 10.1016/j.lanepe.2022.100467
DO - 10.1016/j.lanepe.2022.100467
M3 - Review article
C2 - 35942201
SN - 2666-7762
VL - 21
JO - The Lancet Regional Health - Europe
JF - The Lancet Regional Health - Europe
M1 - 100467
ER -