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FAIR and open data sharing in support of cancer research


Reuse of research, clinical, epidemiological and socio-economic data within and across disciplines and borders require openness, infrastructure capacity, better handling, careful management, machine actionability and seamless access to services all along the data life cycle. The Horizon Europe mission areas recognise upfront that providing access to data, knowledge and digital services through federated infrastructures is a key enabling condition for success. In addition, European Partnerships tackling complex societal challenges through multi-disciplinary approaches are facing important challenges in the European R&I systems, including poor data interoperability. In recent years, different scientific communities have started developing ‘thematic clouds’ or ‘data spaces’ within their domain of research and innovation. The EOSC provides the enabling framework to share, connect and upscale best practices and services by the communities to implement FAIR principles for (open, when possible) data sharing and management. The development of this framework is advancing rapidly as EOSC enters its second phase of implementation. Access to an initial EOSC federation of research infrastructures and their services is being consolidated and concepts such as FAIR data management and FAIR-by-design digital research outputs (data, publications, software, code, protocols, etc.) become more prominent.

The overall objective of this topic is to accelerate research and innovation under this mission area through better access, management, interoperability and reuse of digital information, to be achieved by using and integrating EOSC resources ranging from EOSC federated infrastructures, services and data to guidelines, best practices, tools and metrics for the management of FAIR and open data. This should be achieved through cross-domain, strategic use cases of direct relevance to the mission areas and the European Partnerships supporting this mission area on cancer.

The use cases should demonstrate the value of sharing FAIR and open research data, help to establish data sharing and management practices within the involved communities and across the Member States and Associated Countries, leveraging European research infrastructures and e-infrastructures. The use cases should provide feedback to the EOSC Partnership on the desired future evolution of EOSC. Special attention shall be put on aspects of data harmonisation, integration of data collection, data quality assurance, data privacy and security, big-data analysis and machine learning methods, as well as on the socio-economic dimension of the use case. Proposals should also foster the creation of user environments that researchers in this field can then use in order to seamlessly interact with digital information in the framework of the EOSC ecosystem.

Proposals should provide for activities to collaborate with relevant European Partnerships. Synergies with Horizon Europe Cluster 1 activities and other relevant initiatives, including actions stemming from Cohesion policy programmes are welcome. The activities should contribute to the consolidation of a European Health Data Space which is well articulated with the EOSC. They should build on results of relevant Horizon 2020 projects, including those providing pilots/models for linking clinical data and samples to cancer research, on initiatives for cancer such as the European Cancer Information System with the European Network of Cancer Registries, the European Reference Networks, the Innovative Partnership for Action Against Cancer (iPAAC) Joint Action and on the lessons learned from the ongoing European COVID-19 Data Platform, the EU Platform for Rare Diseases’ Registration and other initiatives in other disease areas. Proposers should consider already established ESFRI research infrastructures and efforts by relevant ESFRI cluster projects.

To ensure complementarity of outcomes, proposals are expected to cooperate and align with activities of the EOSC Partnership and to coordinate with relevant initiatives and projects contributing to the development of EOSC. In particular, in areas such as data interoperability, metadata and vocabularies, the use of persistent identifiers or Authentication and Authorisation Infrastructure (AAI), proposals should coordinate and establish a feedback mechanism with the awarded proposal/s from the topic HORIZON-INFRA-2021-EOSC-01-05 in order to ensure alignment with EOSC policies and to identify common useful tools and resources as well as relevant data repositories that comply with EOSC guidelines. Proposals are also expected to engage and/or align where appropriate with projects funded under the Other action ""FAIR and open data sharing in support of European preparedness for COVID-19 and other infectious diseases"" in this Work Programme, for a synergetic development of the area of Health within EOSC.

Grants awarded under this topic should also cooperate with the actions awarded under topic HORIZON-INFRA-2021-SERV-01-01 to identify and better exploit related synergies, share results and to avoid overlaps. To this extent, proposals should provide for dedicated activities and earmark appropriate resources.