4th ESFRI Stakeholder Forum Meetup

One of two Meetup sessions was focused on „Databases at risk and Research Data Sovereignty Reducing dependencies through consolidated and federated approaches and trusted international collaborations“.

Against the backdrop of growing geopolitical uncertainty, strategic dependencies and the increasing strategic value of research data, three introductory talks framed the thematic break-out sessions giving examples of how data consolidation, integration, and interoperability across research domains can advance One Health (OH), Climate, and Social Sciences and Humanities and identified priorities relevant to the future evolution of the European Research Infrastructure landscape.

The One Health concept was presented by Jana Klanova from EIRENE as an example of how addressing complex societal challenges increasingly requires linking and integrating heterogeneous research data across human and animal health, biodiversity and environmental domains.

Contributions of existing European partnerships and ESFRI infrastructures were acknowledged. The One Health EJP developed a platform for research on zoonoses and antimicrobial resistance while the PARC partnership built a framework for assessment of chemical risks. ESFRI landmarks and projects offer capacities to address various OH elements (see Crete declaration). A more systematic long-term development and integration of relevant infrastructural capacities is, however, needed to capture a complexity of the OH approach - human and ecosystem levels, communicable and non-communicable diseases and genetic and non-genetic factors. A holistic human exposome concept and infrastructural capacities developed in EIRENE are particularly useful for OH implementation, and the SIRENE project supported from Horizon Europe will play an important role in integration of relevant resources across three (Environment, Health and Food, Social and Humanities) ESFRI domains and ten ESFRI infrastructures.

The following break-out group consisting of 50 delegates representing various countries and research domains further discussed challenges and opportunities of working with research data across scientific domains. It highlighted how the growing integration of clinical, genomic, environmental and other cross-domain research data creates new opportunities for interdisciplinary research but also introduces challenges related to interoperability, governance, ethical standards and long-term preservation and accessibility of research data.

It was highlighted that OH has both political - preparedness, early warning and mitigation, and scientific components - causality, advancement in precision medicine and prevention. Such holistic approach can advance a mechanistic understanding of chronic diseases as well factors driving their development. Ongoing cancer research, for example, has shown how combining genetic mutation analysis, somatic observations, exposure to environmental factors, smoking, and other behavioural factors helps us better understand the mechanisms of this disease. The proven key role that modifiable lifestyle, environment, and socioeconomic factors play in the development of cancer opens new opportunities for prevention.

Research infrastructures offering access to existing population cohorts, clinical trials and social surveys, experimental platforms, sensors and environmental observations, biobanks, laboratories, and databases hosting large-scale data collections play a crucial role in the implementation of the OH concept. Both European and national priorities should be considered when developing RI strategies since the integrated system of ESFRI RIs can also provide a backbone for the development on national OH ecosystems. This advocates for even closer collaboration and clustering of existing RIs to provide integrated services, but also for improved collaboration and strategic alignment of relevant ministries and European agencies. Given the sensitivity of individual health data, which makes up a significant part of the OH initiative, many issues will need to be addressed at the national level.

The problem remains the low visibility of research infrastructures, as funders, service and data users, and even researchers often don’t understand their role in producing, processing, and sustainable storing data, which leads to fragmented approaches and funding. Establishing a clear role of infrastructures in the global ecosystem as well as in national contexts, along with creating a model for their management and financing to ensure data sustainability, should be a shared responsibility of various actors across the EU and member states.

The participants saw the greatest OH challenge in linking individual human health records with genetic profiles, exposure measurements and behavioural information from longitudinal cohorts and geo-coded environmental and socioeconomic data. Addressing this challenge is crucial for the implementation of the European Health Data Space (EHDS). To achieve that, data should remain interoperable, traceable and reusable across domains while complying with different regulatory and policy frameworks and ethical requirements (governance of sensitive data).

A role of EOSC in enabling coordinated and federated approaches that strengthen interoperability, trusted access to research data and cross-domain collaboration was also discussed. It was highlighted that EOSC provides an umbrella over existing data and a gateway improving their findability, but it cannot make data interoperable. This will always be in hands of data producers that should be encouraged to overcome thematic silos and make their data accessible, interoperable and re-usable. EOSC should therefore not introduce another isolated system but connect existing infrastructures, databases and services, and develop interfaces and tools allowing different data and infrastructures to work together. It is necessary to create a strategy for the coordinated development of national and European EOSC nodes, which will allow federated analysis of available data.

All of this requires significant investments in improving metadata models, standards, and best practices for data publishing, as well as in the sustainability of long-term data preservation. But above all, it requires a change in mindset.