During the COVID-19 pandemic, it was assumed that European cooperation, both individually and collectively, would produce better results than autonomous national self-interest. Especially the...Show moreDuring the COVID-19 pandemic, it was assumed that European cooperation, both individually and collectively, would produce better results than autonomous national self-interest. Especially the demand for increased cross-national cooperation to accelerate data exchange for multilateral COVID-19 research to inform public health policy-making was highly critical. However, sharing health data for secondary purposes such as research is difficult, as technical, political, and ethical issues were identified before the COVID-19 pandemic. This thesis focused on data management issues and barriers such as a lack of metadata standards and data interoperability. Facilitating cross-border secondary use of health data to inform public health decisions has been on the EU's agenda for some time, leading to the creation of the Joint Action Towards the European Health Data Space and the European Commission’s recommendation on a European electronic health record exchange standard, among other things. The COVID-19 pandemic provided an excellent case study for determining whether these guidelines were adequate for guiding efficient data sharing in collaborative research. For instance, the EU made a significant investment in cooperative COVID-19 research projects with the goal of providing data to support public health policies. In this thesis, ReCoDID, ORCHESTRA, unCoVer, and SYNCHROS—four projects financed by the EU Horizon2020 program—are discussed in detail. The projects shed light on the challenges of sharing patient-level data from observational cohorts, particularly with regard to data management issues such as data interoperability. It was discovered that EU guidelines did enable the formation of research projects and that these projects were even aimed at improving data harmonisation and exchange in COVID-19 research. However, because there is still no EU-standardised agreement on the selection of data interoperability standards, this has become a difficult task. Specifically, none of the four projects examined was able to locate interoperability standards at the legal, policy, care process, information, application, or infrastructure levels.Show less
