A piece of news
“Will there be a European Health Data Space for everyone?” This was the title of a meeting Biocat held on July 20 at the Barcelona Health Hub for companies and experts in the health arena to discuss their expectations for secondary use of clinical data once the proposed regulation on the European Health Data Space (EHDS) is adopted.
The event kicked off with a presentation on the EDAH - European Data Space in Health project, coordinated by Biocat and funded through Horizon Europe, which aims to encourage debate on secondary use of health data and facilitate advances in the European Health Data Space (EHDS). Biocat Director of Science Policy and Internationalization Montserrat Daban presented the project and explained how Europe can be a global leader and promoter of best practices in this arena, before giving the floor to Barcelona Health Hub CEO Luis Badrinas, who introduced the association’s goals and strategy.
Two digital health companies participated in the event: Pol Solà presented the algorithmic auditing company for health AI, Vincer.ai, and Hassan Ghosn presented Mediktor, an AI medical assistant for triage and pre-diagnosis.
The main feature of the event, however, was a panel discussion with five experts from the sector analyzing the challenges and opportunities of secondary use of health data from their different perspectives. The panelists were Ángeles Barrios, Public Affairs and Stakeholder Relations lead at EIT Health; Francisco Lupiáñez, co-founder of PredictBy; Joaquín Cayón, vice-president of the European Association of Health Law; Míriam Méndez, head of research and innovation in the Health DPO at TIC Salut Social Foundation; and Pedro Carrascal, CEO of the Platform of Patient Organizations. The panel was moderated by Alba Jiménez, head of the EDAH project at Biocat.
Ángeles Barrios explained that EIT Health is hosting a dozen panel discussions between April and October with 12 countries involved to analyze “how implementable the European Health Data Space is in each country of the European Union.” The resulting report will be presented to the European Parliament at the end of the year.
Joaquín Cayón, vice-president of the European Association of Health Law, defended the new European data space as an opportunity “to go much further” than the current data protection regulations. “This issue is more cultural than legal,” he noted, “and we have to be creative and flexible in harmonizing the new regulation with current data protection law, which is excessively defensive.” Cayón brought up the issue of data ownership, which sparked active debate among all those taking part in the event.
For her part, Míriam Méndez of the TIC Salut Social Foundation called for institutions “to work to comply with the principle of privacy from the very beginning” of research projects because, in her experience, under current regulations, many come up against problems when it is too late, when they’re already with the ethics committee. Méndez pointed to the “Data Access Committee” established two years ago at Vall d’Hebron Hospital as an example of good practices. This committee was explained during the event by Zaira Benítez, head of the hospital’s Data Architecture Unit.
Patients must be the first to benefit from the European Health Data Space, as noted Pedro Carrascal, CEO of the Platform of Patient Organizations “Debate on the use of health data suffers from a lack of patient participation” he lamented and ensured that they are prepared and very interested in giving their constructive criticism in order to help bring about solutions to diseases under a framework of preventive and personalized medicine.
Francisco Lupiáñez, co-founder of PredictBy and UOC professor, explained some aspects of the EHDS regulation, currently being developed, and pointed out the needs and roles of the various sorts of stakeholders involved, from data subjects to users and access bodies. Lupiáñez, who took part in the EHDS impact study conducted by the European Commission in 2022, warned of the need to discuss the data economy as an essential step in regulating it.
The main conclusions of this event will help inform the case report on EHDS and Spain that Biocat is compiling as part of the EDAH project and while Spain holds the presidency of the Council of the EU from July to December 2023.
Retrieve the videos of the sessions here!