An innovative technological infrastructure for managing SARS-CoV-2 data across different cohorts in compliance with General Data Protection Regulation

Author:

Dellacasa Chiara1ORCID,Ortali Maurizio1,Rossi Elisa1,Abu Attieh Hammam2,Osmo Thomas3,Puskaric Miroslav4,Rinaldi Eugenia2,Prasser Fabian2,Stellmach Caroline2,Cataudella Salvatore1,Agarwal Bhaskar1,Mata Naranjo Juan1,Scipione Gabriella1

Affiliation:

1. HPC Department, CINECA Consorzio Interuniversitario, Bologna, Italy

2. Berlin Institute of Health (BIH), Charité – Universitätsmedizin Berlin, Berlin, Germany

3. Département Archivage et Services aux Données (DASD), Centre Informatique National de l'Enseignement Supérieur (CINES), Montpellier, France

4. High Performance Computing Center Stuttgart (HLRS), University of Stuttgart, Stuttgart, Germany

Abstract

Background The ORCHESTRA project, funded by the European Commission, aims to create a pan-European cohort built on existing and new large-scale population cohorts to help rapidly advance the knowledge related to the prevention of the SARS-CoV-2 infection and the management of COVID-19 and its long-term sequelae. The integration and analysis of the very heterogeneous health data pose the challenge of building an innovative technological infrastructure as the foundation of a dedicated framework for data management that should address the regulatory requirements such as the General Data Protection Regulation (GDPR). Methods The three participating Supercomputing European Centres (CINECA - Italy, CINES - France and HLRS - Germany) designed and deployed a dedicated infrastructure to fulfil the functional requirements for data management to ensure sensitive biomedical data confidentiality/privacy, integrity, and security. Besides the technological issues, many methodological aspects have been considered: Berlin Institute of Health (BIH), Charité provided its expertise both for data protection, information security, and data harmonisation/standardisation. Results The resulting infrastructure is based on a multi-layer approach that integrates several security measures to ensure data protection. A centralised Data Collection Platform has been established in the Italian National Hub while, for the use cases in which data sharing is not possible due to privacy restrictions, a distributed approach for Federated Analysis has been considered. A Data Portal is available as a centralised point of access for non-sensitive data and results, according to findability, accessibility, interoperability, and reusability (FAIR) data principles. This technological infrastructure has been used to support significative data exchange between population cohorts and to publish important scientific results related to SARS-CoV-2. Conclusions Considering the increasing demand for data usage in accordance with the requirements of the GDPR regulations, the experience gained in the project and the infrastructure released for the ORCHESTRA project can act as a model to manage future public health threats. Other projects could benefit from the results achieved by ORCHESTRA by building upon the available standardisation of variables, design of the architecture, and process used for GDPR compliance.

Funder

Horizon 2020 Framework Programme

Publisher

SAGE Publications

Reference42 articles.

1. The impact of the COVID-19 pandemic on scientific research in the life sciences

2. ORCHESTRA Project: https://www.orchestra-cohort.eu.

3. Challenges of data sharing in European Covid-19 projects: A learning opportunity for advancing pandemic preparedness and response

4. Assessment of the EU Member States’ rules on health data in the light of GDPR. Specific Contract No SC 2019 70 02 in the context of the Single Framework Contract. Chafea/2018/Health/03: https://ec.europa.eu/health/sites/default/files/ehealth/docs/ms_rules_health-data_en.pdf.

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