(Wien/et al., 17 June 2021) At the Research Data Rights Summit in January 2020, nine major networks of research-intensive universities, including Universitätsklinikum AKH Wien and MedUni Vienna, signed the "Sorbonne Declaration on Research Data Rights”. It strongly affirms the willingness of universities to share their data, while firmly calling on governments and funders to adopt a clear legal framework to regulate this sharing and provide the means to put it in place. The European University Hospital Alliance (EUHA) has now endorsed the declaration, supporting the goal of making access to research data for transparency and reuse the norm in medical research.
The European University Hospital Alliance (EUHA) has signed the “Sorbonne Declaration on Research Data Rights”. The alliance thus joins nine university networks, including the Association of American Universities, the League of European Research Universities, and the German U15, which overall include about 200 research-intensive universities world-wide. These organisations had signed the declaration at the Research Data Rights Summit on January 27th 2020.
The Sorbonne Declaration expresses the signatories’ recognition of the importance of making research data available, and their commitment to ensure this. Sharing of research data, grounded in structured management of these data, has high importance for transparency and trustworthiness, as well as tremendous value for reuse and knowledge generation. This is especially true in medical research, where many questions, e.g. on rare diseases and in personalized medicine, can only be addressed by pooling data between institutions, and where an ethical argument can be made for the wide reuse of clinical trial data. However, making the datasets underlying research publications widely available is so far uncommon in most fields of medical research. By joining the declaration, EUHA members commit to promoting and supporting data sharing e.g. on the levels of institutional policies, hiring and tenure decisions, infrastructures, and skills development.
Overall, EUHA members intend to implement measures to allow research data management and sharing to become a standard part of the research process. This will lead to more and, importantly, more reusable data being shared. This is in line with EUHA’s strategic goal of fostering responsible research and innovation, and will contribute to making EUHA institutions ready for an increasingly digital, cooperative, and transparent research environment, as exemplified by large projects like the European Open Science Cloud and by the European Commission’s support for Open Science overall. By committing to the declaration, EUHA also calls upon funders and legislators to provide the means and the frameworks, respectively, for data curation and data sharing. The ultimate goal is that by making data sharing in medical research the norm, the full potential of research data will be realized for generating new knowledge and thus patient benefit.
About the European University Hospital Alliance
The European University Hospital Alliance is formed by nine leading European University Hospitals with demonstrated excellence in healthcare, education and research which collaborate to improve outcomes for today’s and tomorrow’s patients:
The following university hospitals form the European University Hospital Alliance (EUHA)
• Assistance Publique-Hôpitaux de Paris, Paris
• Barcelona Hospital Campus Vall d’Hebron, Barcelona
• Charité – Universitätsmedizin, Berlin
• Erasmus University Medical Center, Rotterdam
• Karolinska University Hospital, Stockholm
• King’s College Hospital, London
• Ospedale San Raffaele, Milan
• University Hospitals Leuven, Leuven
• Universitätsklinikum AKH Wien & MedUni Wien, Vienna
Each of the nine members is a leading university hospital within their country and all have centres of excellence in research. We are national reference sites, each of our hospitals has a capacity of more than 1,000 beds and we cover 100% of the existing European Reference Networks (ERNs). Our motto “Leading by doing” represents our intention to be an influential advisor at the European-level by leading the development of innovative solutions to the most important challenges facing European health and healthcare.