The European Health Data Space and how IACS is helping to beat cancer.
A new regulation to access health data in Europe
The European Health Data Space (EHDS), with its final text published in the Official Journal of the EU on March 5th, is a landmark initiative by the European Union aimed at transforming healthcare through the secure and efficient use of health data. The EHDS regulation seeks to establish a unified framework for health data exchange across the EU, thereby enhancing both healthcare delivery (primary use) and research/policy-making (secondary use).
The secondary use of health data regulated by the EHDS can revolutionize cancer screening by enabling researchers and policymakers to analyze anonymized datasets across populations, improving early detection through risk stratification (e.g., identifying high-risk groups via genetic or lifestyle factors), enhancing screening accuracy via AI trained on diverse data, reducing disparities by addressing gaps in access or outcomes, and accelerating innovation by testing new methods or biomarkers. By pooling EU-wide data, it strengthens evidence-based guidelines, monitors program effectiveness, and supports cross-border collaboration for rare cancers, all while adhering to strict privacy safeguards and ethical governance to ensure equitable, efficient, and personalized public health strategies.
In the context of the EUCanScreen project, the Aragon Health Sciences Institute (IACS), a public institution dedicated to generating knowledge in health sciences in the Aragón region (Spain), is collaborating with the Cancer Society of Finland (CSF) to lead a pilot program. This program is designed to test how the EHDS will facilitate the monitoring of cancer screening programs across Europe. Through a rigorous process of aligning methodologies and software tools, an EHDS-compliant solution to compute the European Cancer Information System (ECIS) indicators—which were established in the CanScreen-ECIS project— will be developed and tested across a number of joint action partners.
IACS has been instrumental in the development of the EHDS since its inception. The expertise of the IACS team in developing BIGAN, the Aragón region health data lake, has provided the
opportunity to participate in a range of EHDS construction-related projects, including the TEHDAS Joint Action, the HealthData@EU pilot, QUANTUM project —as coordinators— and SHAIPED, which began this month.
In this conjunction between the EHDS and its application to fight cancer, IACS will also participate in a new series of projects with this goal, specifically CANDLE and EU-CIP—both part of the Cancer Mission of the Horizon Europe Programme—, and the eCAN Plus and Personalised Cancer Medicine Joint Actions—part of the European Beating Cancer Plan of the EU4Health programme—. All these projects will focus on how the data available in the health systems can be accessed, shared, and utilized through the EHDS, with all necessary security and privacy measures, to improve the prevention, early detection, treatment, and follow-up for cancer patients. This includes informing their families and providing the most up-to-date evidence to healthcare professionals.
Juan González-García, Head of Health Data Strategy and Head of the Biocomputing Unit at IACS, said: ‘The EHDS is a breakthrough in the fight against cancer.’ He added: ‘Member States must prepare to maximise the potential of the EHDS and provide researchers, clinicians and policy makers with the data and tools they need to save the lives of cancer patients.’
https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=OJ:L_202500327
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Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HADEA). Neither the European Union nor HADEA can be held responsible for them.
The general objective of EUCanScreen is to assure sustainable implementation of high-quality screening for breast, cervical and colorectal cancers, as well as implementation of the recently recommended screening programs – for lung, prostate and gastric cancers. EUCanScreen will facilitate the reduction of cancer burden and achieving equity across the EU.
This project has received funding from the European Union’s EU4HEALTH Programme under the Grant Agreement no 101162959
