2022. Specialists from different disciplines shared, from different perspectives, the requirements that need to be addressed in the new federated space for personal health data.
the seminar
The Privacy and Digital Transformation Chair organised the seminari Health Research: European Health Data Space challenges with the aim of analysing the challenges for health research in the new European Health Data Space (EHDS). The event was held on 16 November 2022 at the headquarters of the Representation of the European Commission in Spain. More than 40 people participated in the hall and 98 people followed it online.
The opening session was given by María de los Angeles Benítez Salas, Director of the Representation of the European Commission in Spain; Joaquín Aldás-Manzano, Vice-Principal for Planning, Quality and Information Technologies of the Universitat de València; Mar España Martí, Director of the Spanish Data Protection Agency (AEPD); and Elene M. Grimme, Associate General Counsel at Microsoft and Director of the Government Affairs professional in Western Europe.
Joaquín Aldás-Manzano stated that “it is essential for health data to be available for researchers in the field of biomedical research”. However, he said, “they must be available with the appropriate guarantee of the fundamental rights of citizens and an adequate European regulatory framework”.
In this sense, the academic highlighted the value of an interdisciplinary research promoted by the Universitat. For instance, he explained, “the Faculty of Medicine works in close collaboration with university hospitals and with joint research institutes such as INCLIVA, in interdisciplinary collaboration ecosystems with the artificial intelligence group in the School of Engineering or the Institute on Robotics IRTIC”, he said.
In the same vein, Elena M. Grimme pointed out that health research “is one of the best examples of the need for multidisciplinary teams to collaborate to provide solutions to complex challenges”.
At the same time, Grimme praised the European Health Data Space for its democratising effect on knowledge. Against that, he raised the need to address fragmentation in the EU. “Fragmentation remains in many areas that are critical for research”, he explained, “such as data use, data sharing or intellectual property and liability”.
In the next part,Ricard Martínez Martínez, Director of the Microsoft-Universitat de València Privacy and Digital Transformation Chair, referred to the future of health research, from an overview of governance and requirements. In this regard, he stressed the need to “seek the best possible regulation to build an EHDS that enables the creation of safe spaces for data circulation”.
The EHDS requirements were then addressed from different perspectives. In relation to the construction of data repositories from the perspective of researchers, academics Luís Marti Bonmati, Director of the Clinical Department of Medical Imaging at La Fe University and Polytechnic Hospital and Enrique Bernal-Delgado, Director and Senior Researcher in the Research Unit on Health Policies and Services at the Instituto Aragonés de Ciencias de la Salud (IACS) participated. The latter argued that the use of sensitive patient data could be necessary for the development of health research. Specifically, he noted, “this means using minimisation, pseudonymisation and K-anonymity methods to protect health data”. He said, “perminimising and pseudonymising may not be enough, and therefore federated data is needed”.
This was followed by Miguel Ángel Benito Tovar, Data Protection Officer of the Balearic Islands Regional Healthcare System, who spoke from the perspective of security and interoperability, mainly in public institutions. Then, the academic Federico de Montalvo Jääskeläinen, Vice-Principal for Institutional Relations and Secretary-General of the Comillas Pontifical University, referred to the ethical requirements implied by the EHDS. In that sense, he talked about the traceability of data and three challenges that must be solved, namely “verifying the validity of the algorithms, more information to the patient and comparing the results with the clinical evolution of the patient”, he added.
Magdalena Kogut–Czarkowska, Attorney-at-law at TIMELEX and member of the ELSI Group; Jesús Rubí Navarrete, Director of Institutional Relations of the AEPD; and Leonardo Cervera Navas, Director at the European Data Protection Supervisor (EDPS), concluded the session dedicated to the EHDS requirements. The latter argued that the “success of the EHDS will depend on compliance with data protection principles and on having a strong data governance mechanism that is lawful, enforceable, ethical and anchored within EU values”. At the same time, he pointed out that “without prejudice to possible specific transfers under the GDPR, the European Health Data Space should be obliged to store such electronic data in the European Economic Area (EEA).
Finally, Andrea Pescino, partner and founder of StratejAI and member of the Partner Advisory Council (PAC) at Microsoft Corporation, and Gabriel López Serrano, Government Affairs Director of Microsoft Iberica, closed the conference. Both spoke about the opportunities offered by the EHDS for digitalisation and the common good. López Serrano said that “the actions we can take as an industry during this next phase will lay the foundation for better performance of the health data ecosystem and thereby increase its resilience long after the pandemic is over”, he concluded.
More information about the seminar Health Research: European Health Data Space challenges can be found on the Chair’s website.
