Transforming health data into knowledge and tangible health benefits for people, from regional health systems to the European Health Data Space. This was the theme of the seminar “Life Data. Growing, living, aging: the public value of health data,” promoted on November 10 by AGENAS at its Rome headquarters, on World Science Day, with the participation of representatives from European and national institutions, research, health professions, and regulatory authorities.
Opening the proceedings with a video message, Massimiliano Fedriga, president of AGENAS: «Health data accompany us throughout the course of our lives. From birth, we grow, we are treated, and we age. They are data that concern citizens, and they must come back to citizens in the form of better services, more timely care, and more informed decisions».
Access to Health Data Grounded in Trust
For the European Commission, Sandra Gallina, Director-General for Health and Food Safety (DG SANTE), joined from Brussels. «The European Health Data Space is a fundamental step toward a more integrated and competitive health Europe. Using data to improve care, support research, and steer policies is possible only together with the protection of rights, transparency, and the trust of people».
«Data is not a technical issue and does not concern only professionals», Gallina emphasized, also recalling the experience of the Covid certificate, which required intense coordination at the European level and helped make visible the public value of digitalization.
«A path in which one element takes center stage: trust. – she continued – Data accompany people through all stages of life, from growth to daily life, to aging, and enable a better understanding of the population’s health status and the quality of Europe’s health systems. This is an informational heritage that supports patients, contributes to knowledge about health needs, and represents a resource of great value for society as a whole.»
From here comes a call to a fundamental principle: it is not enough to talk about access to health data; one must guarantee access that is governed, secure, transparent, and based on patients’ trust, which must remain at the center of every decision.
«The European Health Data Space (European Health Data Space – EHDS) is being built with the ambition to create a common European framework that enables better use of data, avoids dispersion and fragmentation, and at the same time ensures protection», she concluded.
Data Gains Full Value When Linked to Other Data
During the seminar Felicia Pelagalli, Scientific Director of the Data Summit and Health Data Governance Lead at AGENAS, presented the Proceedings of the 2026 edition.
«An isolated piece of information, even when adequately protected, does not possess the same capacity to generate knowledge as a data heritage that can be linked and analyzed over time. – Pelagalli stated. – The reference is, in particular, to the possibility of reconstructing a person’s path through information collected across different life stages, identifying correlations between sources and surfacing insights that would not be possible by analyzing single data points.»
«The reality – Pelagalli observed – is complex and unified, while disciplines and data-collection systems have often produced fragmentation into separate categories and domains. The challenge is therefore to rebuild this fragmentation by linking different information assets. This is precisely the perspective of the European Health Data Space, which introduces a new sharing dimension by connecting information from the 27 member states and potentially enabling analyses on a population of over 450 million European citizens. The ability to integrate different sources represents another element of innovation.»
Pelagalli cited, as an example, the link between health data, social security information, and climate data, highlighting the potential of this approach also within the One Health framework, which recognizes the interconnections between human health, the environment, and other factors.
Towards the Third Edition of the Data Summit: Public Health Challenges
Pelagalli then announced the third edition of the Data Summit, scheduled for January 21, 2027 in the Zuccari Hall of the Senate of the Republic, at the initiative of Senator Francesco Zaffini.
If the first edition was devoted to understanding what the European Health Data Space is and the second explored the implementation status of the regulation, the third will focus on its practical usefulness: what opportunities it may offer and what results can be achieved through the availability and use of data.
The identified theme is understanding the time of life, with particular reference to three major public health challenges that could benefit from access to and analysis of health data.
The first concerns healthy aging. Italy is one of the longest-lived countries in Europe, and the European Health Data Space could contribute to building a knowledge infrastructure on longevity, useful for understanding the trajectories that lead to healthy aging and those that may foster the onset of dementia. Pelagalli noted, in particular, the limited availability of data related to the elderly population, even though this age group represents one of the main user categories of medications.
The second challenge concerns cardiovascular health. Cardiovascular diseases are the leading cause of death in Italy and in Europe. In this area, the European Union has launched the Safe Hearts Plan, an initiative that will be explored further at the upcoming Data Summit with contributions from the European Director of Public Health and researchers already engaged in using data for cardiovascular prevention.
The third area identified is mental health, with particular attention to the relationship between psychological well-being, digital platforms, and new generations. Pelagalli highlighted the growing attention to the effects that the use of social and digital platforms can have on cognitive and emotional development, again underscoring the limited availability of data. The proposed approach is a One Mental Health perspective, capable of addressing mental health through an integrated view.
In conclusion, Pelagalli recalled a phrase also featured on the volume’s back cover that captures the meaning of the entire journey: «Health data are the most intimate trace of people’s lives. Protecting them and governing them with clear rules is a responsibility that cannot wait».
Abbonati a Karla Miller
