by Admin | Mar 14, 2025 | DATA Knowledge
On March 5, the Health Data Space (EHDS) has been Official Journal of the EU. This pioneering initiative aims to create a secure and efficient digital health-specific data environment, benefiting all EU citizens and healthcare professionals, researchers and policymakers.
It will make it easier to exchange and access health data at EU level. It promises to improve individuals’ access to and control over their personal electronic health data, while also enabling specific data to be reused for research and innovation purposes for the benefit of European patients. By fostering a more interconnected, patient-centred, and data-driven healthcare system, the EHDS will enhance efficiency, reduce administrative burdens, and support innovation and long-term sustainability of health services.
Trust is also fundamental to the EHDS. The framework builds on existing EU regulations, including the General Data Protection Regulation (GDPR), to provide a trustworthy setting ensuring data protection.
Primary use: citizens and individuals
The EHDS places citizens at the heart of healthcare by granting them better control over their personal health data. Key benefits include:
- Fast and Free Access: Individuals will be able to swiftly access their electronic health data, facilitating seamless sharing with healthcare professionals or family members in case of need across the EU.
- Enhanced Control: Citizens will have the ability to add personal health information, restrict access to specific parts of their records or to specific persons, view who accessed their data, and request corrections if errors are found.
- Security and Privacy: The EHDS requires robust security and privacy protections by default, to align with the EU’s high data protection standards.
Learn more about the primary use of the health data in the EHDS by clicking here.
Secondary use: research and innovation
At the same time, researchers, public health authorities, and policymakers will be able to leverage health data in a secure and privacy-preserving way to accelerate the development of new treatments, improve disease prevention, and strengthen Europe’s crisis preparedness.
For research projects like HEREDITARY, the EHDS offers unprecedented opportunities:
- Access to High-Quality Data: Researchers will be able to access to large-scale health data, in anonymised or pseudonymised form, crucial for developing life-saving treatments and personalized medicines.
- Structured data discovery: A clear and structured system allows researchers to discover available data, understand its location, and assess its quality, making research more efficient and impactful.
- Ensuring interoperability of the data: The new regulation requires all electronic health record (EHR) systems to comply with the specifications of the European electronic health record exchange format, ensuring that they are interoperable at EU level, which is one of the FAIR principles that the HEREDITARY project pursues in its data management.
- Cost-Efficiency: Streamlined access to high-quality health data reduces research costs, enabling more studies and innovations within available budgets.
Learn more about the secondary use of the health data in the EHDS by clicking here.
Looking ahead
After the signing by the Council and the European Parliament and its publication in the EU’s Official Journal, the EHDS Regulation will enter into force on 26 March 2025 and will become applicable in different phases over the course of the following years, with target dates of 2029 and 2031 for full implementation.
At HEREDITARY, we are enthusiastic about the possibilities the EHDS brings. By enabling secure and seamless data exchange, the EHDS transforms healthcare for everyone: patients, professionals, researchers, public health institutions and industry alike.
Stay tuned as we continue to explore the benefits of the EHDS for our research and the broader community. Together, we are stepping into a new era of healthcare innovation and citizen empowerment.
Access more information on this promising regulation here.
by Admin | Feb 26, 2025 | Events
The HEREDITARY consortium will take part in the upcoming JARDIN Hackathon on Health Data Federated Querying, an event organized by the European Commission. The Hackathon aims to tackle key challenges in integrating sensitive health data across multiple institutions while exploring innovative solutions. Its objectives align closely with our project’s goals, particularly in the fields of federated analytics and learning. A key focus will be enabling federated queries, allowing researchers to extract valuable insights without compromising patient privacy or data security.
This initiative brings together experts from diverse fields, fostering collaboration and knowledge exchange to address these complex issues effectively.
Key topics to be explored during the hackathon include:
- Harmonizing data exports from healthcare provider systems.
- Developing tools and methods for federated data querying.
- Enhancing semantic representation and ensuring compliance with FAIR data principles.
The event is open to professionals from various disciplines, including clinicians, data stewards, analysts, developers, and semantic web specialists, all of whom play a crucial role in advancing data harmonization and secure querying practices.
Although an official event date has not yet been set, the registration deadline for the hackathon is March 5, 2025. We invite all interested participants to seize this opportunity to contribute to the future of digital healthcare while gaining valuable insights. Check here the preliminary agenda!
by Admin | Nov 13, 2024 | Hereditary
We are delighted to introduce our latest video series, made by our partner Observa, where we delve into the research of the HEREDITARY project, guided by our esteemed coordinator, Gianmaria Silvello from the University of Padua (UNIPD).
Gianmaria Silvello is a computer science engineer researcher at Department of Information Engineering of the University of Padua. His research spans knowledge management, intelligent information systems, information access, algorithmic fairness, digital libraries and data provenance and citation.
Each video offers a closer look at the project’s objectives, methodology, and layers, helping you to understand the impact of this pioneering work on healthcare and data research.
This video series is part of the HEREDITARY voices series.
Episode 1. The project approach
In this first episode, Gianmaria explains the focus of the project, the interaction between the gut and the brain, and its main challenge: integrating multilingual and multimodal data distributed across several centres. To meet this challenge, the project will rely on federated learning and federated analytics techniques.
Episode 2. Federated learning
Federated learning is a machine learning technique that aims to train a model under the principles of collaboration between multiple entities to ensure that information remains decentralized, reinforcing privacy and security.
Episode 3. Semantic data integration
Hereditary aims to simplify the way we interact with data in order to achieve a better understanding of it. One of the project main goals is to make data accessible to everyone through a common, accessible language. Therefore, we’ll be able to treat multiple neurological diseases in a unified way, using the same terms or ideas and getting answers that everyone understands.
Episode 4. Expected results
Gianmaria talks about Hereditary’s approach to achieving its main holistic goal around gut-brain interplay. Connections between different data from many different perspectives are processed and combined with previously obtained patient information and literature knowledge to illuminate specific aspects of the diseases we didn’t know about before. This will provide a better picture to ultimately find new treatments and better diagnoses.
Episode 5. Artificial Intelligence
AI has a central role in the Hereditary project. Deep learning algorithms are being used to process, classify and establish relations between the different elements. Generative AI is also taken into account to extract information from texts, but also to generate new ones. AI is used in many different ways and at different levels, without forgetting that the previous data management and processing is fundamental for the AI to work properly.
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