The Valdecilla Health Research Institute (IDIVAL) held yesterday in Santander the seminar-workshop “Governance models for health data: legal, ethical and care-related aspects”, coordinated by Joaquín Cayón, director of the Health Law and Bioethics Research Group and principal investigator of the VALDATA project.
The event brought together professionals from different fields to analyse the challenges and opportunities posed by the use of health information and to share experiences on the governance models needed to harness its potential in a safe, responsible and value‑oriented way. It highlighted the need to establish clear rules, responsibilities and control mechanisms that allow data use to be compatible with the protection of individuals’ rights.
From VALDATA use cases to comparative governance experiences
During the session dedicated to the development of the project’s use cases, Alfonso Villegas, Deputy Medical Director of the Marqués de Valdecilla University Hospital, explained the work aimed at linking use cases with data governance and improving their quality and reliability. Among the lines of work presented were the incorporation of research-derived information into the clinical record and progress towards greater connection between the primary and secondary uses of data, supported by interoperability, semantic and quality standards.
For her part, Trinidad Valle, technical advisor at the Cantabrian Health Service, presented initiatives related to monitoring infections and multidrug-resistant microorganisms, as well as early detection of sepsis. She also outlined the work carried out in the field of value-based healthcare, with cases focused on diabetes and depression and the analysis of clinical variables and patient-reported outcomes.
The workshop also provided insight into models and experiences developed in other regions and organisations. Iñaki Gutiérrez-Ibarluzea, Director of Research, Innovation and Health Evaluation at the Basque Government’s Department of Health, presented Euskadi’s experience in creating a data access office and building a data space involving different government departments. Ana González, Head of Innovation and International Projects at the Community of Madrid, described the evolution of the HealthData@MAD-R&I project and the central role of governance in leveraging health data infrastructures for research and innovation.
Álvaro Echevarría, Director of Legal Affairs at the General Council of Pharmacists, addressed the potential role of community pharmacies in the development of the European Health Data Space and stressed the need to strike a balance between ensuring appropriate use of information and avoiding its underuse. In this regard, he highlighted the importance of establishing clear pathways, well‑defined responsibilities and coordinated procedures that facilitate access to data for research purposes.
Data as a tool to transform the health system
In the second part of the workshop, dedicated to the elements that should be integrated into governance models, participants agreed on positioning data as a strategic tool for transforming the health system. Marcos Hernández Pereña, Medical Director of the La Princesa University Hospital, emphasised the capacity of data spaces to drive digital transformation, support the development of artificial intelligence and foster more patient‑centred care and research.
From a research perspective, Verónica Tiscar, Head of R&D&I at OSI Bilbao‑Basurto / IIS Biobizkaia, advocated for the involvement of the research field from the design stage and throughout the entire data lifecycle, contributing to improving its quality, interoperability and usefulness.
María Montero, Nursing Supervisor at OSI Donostialdea (Osakidetza), focused on the quality of data generated during care delivery and on the importance of engaging professionals in a culture of documentation that ensures that the information collected leads to better health outcomes, without losing sight of close, person‑centred care.
Finally, Oriol Estrada, Director of Strategy and Innovation at the Germans Trias University Hospital in Badalona, stressed the need for healthcare organisations to develop greater adaptive capacity and an innovation culture that enables the incorporation of new technologies and translates them into real improvements for population health.
The conclusions of the workshop reinforce one of VALDATA’s central objectives: moving towards an integrated governance model that links access to and use of health data with its quality, security, interoperability and privacy protection.
