About Better
A European research initiative for federated, real world health data analytics
BETTER aims to deliver a federated, privacy-preserving analytics infrastructure that enables European clinical research across national borders, without compromising privacy.
Mission
Project goals
BETTER builds upon the Personal Health Train (PHT) paradigm: a federated infrastructure where algorithms travel to distributed data sources rather than moving sensitive patient data to a central location.
The PHT platform implements a Distributed Analysis design — bringing queries to the data, rather than data to the query. This approach enables privacy-preserving cross-border collaboration between hospitals, research institutions and registries.
The initiative addresses three clinical domains: paediatric intellectual disability, inherited retinal dystrophies (IRDs), and autism spectrum disorders — all requiring genomic and clinical data federation that cannot be centrally collected.
Through PHT-based real-world evidence analysis, BETTER contributes to the promise of GDPR: enabling data sharing without exposing individual records to third parties.
Start date
January 1st, 2023
Duration
42 months
Total budget
€9.5M
Grant agreement
No. 101136262 under Horizon Europe
Coordinator
DATRIX S.p.A
Partners
15 partners across 8 EU countries
Use cases
3 rare disease domains
Project timeline
Four year work programme
Analysis & Technical Framework
Requirements gathering, technical framework design, ethical & legal analysis.
Platform Development & Deployment
Development of the PHT platform, FAIR data preparation and deployment at clinical sites.
Use case execution
Execution of three clinical use cases across federated European institutions.
Evaluation, publication, sustainability
Platform evaluation, publication of results, sustainability planning.
Data management
FAIR data in a federated context
Every dataset entering the PHT platform is standardized using semantic ontologies and interoperable formats, enabling seamless cross-institution queries without raw data exposure.
Findable
Datasets are catalogued and discoverable across participating institutions.
Accessible
Authorized queries can access data without physical transfer.
Interoperable
Harmonized using semantic ontologies and clinical terminologies.
Reusable
Well-documented and ready for new research questions and future use.
Ethical, Legal and Social Aspects
BETTER treats privacy as a foundational requirement — not a constraint. The platform's privacy-by-design architecture ensures that GDPR compliance, data minimization, and ethical oversight are embedded in every technical decision.
The project maintains a continuous ethics board oversight throughout development and deployment. All research protocols, data governance frameworks, and institutional agreements are reviewed for compliance with the European Code of Conduct for Research Integrity, national ethics guidelines, patient representation and EU directives.
To preserve the benefits of federated analysis over time, BETTER includes dedicated work packages that address issues around data provenance, algorithmic transparency, informed consent in distributed settings and long-term data stewardship.
Part of Horizon Europe's mission for trustworthy health data infrastructure
BETTER aligns with the European Health Data Space (EHDS), the FAIR data action plan, and the development of trustworthy AI in healthcare.
It demonstrates that privacy and research scale are not in opposition — they can co-exist through federated infrastructure. The outcomes will inform European health data governance and federated analytics standards moving forward.