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
(2022) The Lancet Regional Health - Europe, volume 21
(Article)
Abstract
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
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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.
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Keywords: Cohort study, Data sharing, General Data Protection Regulation, Machine learning, Pandemic, Preparedeness, SARS-CoV-2, Internal Medicine, Oncology, Health Policy
Publisher: Elsevier
Note: Funding Information: The ReCoDID project has received funding from the European Union Horizon 2020 Research and Innovation Programme under Grant Agreement No. 825746, and is supported by the Canadian Institutes of Health Research, Institute of Genetics (CIHR-IG) under Grant Agreement No. 01886-000. Funding Information: MB reports grants to UMCU from Janssen Vaccines, Novartis and CureVac, consulting fees from Astra Zeneca, Pfizer, Janssen Vaccines, Novartis,Takeda,Janssen Vaccines and payments from Sanofi for Participation on a Data Safety Monitoring Board or Advisory Board. ET, EC and RJD report H2020 funding for ORCHESTRA. JH reports H2020 funding for ORCHESTRA, funding from the German Research Council for the SEPAN Project, funding from German Ministry of Education and Research for the EMUNE and the INSIDe Project and funding from Volkswagen Stiftung for the E2 project. AS and EV report H2020 funding for SYNCHROS. TJ reports H2020 funding for ReCoDID. All other authors declare no competing interests. Funding Information: The unCoVer project is funded by the European Union's Horizon 2020 Research and Innovation Programme under Grant Agreement No 101016216. Funding Information: The SYNCHROS project has received funding from the European Union's Horizon 2020 Research and Innovation Programme under Grant Agreement No. 825884. Publisher Copyright: © 2022 The Authors
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