BETTER

Horizon Europe
DEIB Role: Partner
Start date: 2023-12-01
Length: 42 months
Project abstract
In recent years data-driven medicine has gained increasing importance in terms of diagnosis, treatment and research due to the exponential growth of healthcare data. The linkage of health data from various sources, including genomics, and analysis via innovative approaches based on artificial intelligence advanced the understanding of risk factors, causes and development of optimal treatment in different disease areas. Furthermore, it contributed to the development of a high-quality accessible health care system. However, medical study results often depend on the amount of available patient data, crucially when it comes to rare diseases this dependency is accentuated. Typically, the more data is available for the intended analysis or the scientific hypotheses, the more accurate the results are. Nevertheless, the reuse of patient data for medical research is often limited to data sets available at a single medical center.
The most imminent reasons why medical data is not heavily shared for research across institutional borders rely on ethical, legal and privacy aspects and rules. Data protection regulations prohibit data centralization for analysis purposes because of privacy risks like the accidental disclosure of personal data to third parties. Therefore, in order to (1) enable health data sharing across national borders, (2) fully comply with present GDPR privacy guidelines and (3) innovate by pushing research beyond the state of the art, the BETTER (Better rEal-world healTh-daTa distributEd analytics Research platform) project, funded by the European Union’s Horizon program and the UK Research and Innovation Program, proposes a robust decentralized infrastructure which will empower researchers, innovators and healthcare professionals to exploit the full potential of larger sets of multi-source health data via tailored made AI tools useful to compare, integrate, and analyze in a secure, cost-effective fashion, with the very final aim of supporting improvement of citizen's health outcomes.
In detail, the interdisciplinary project proposes 3 use cases involving 7 medical centers located in the EU and beyond, where sensitive patient data, including genomics, is made available and analyzed in a GDPR compliant. The proposed clinical use cases focus on evidence-based research on Pediatric Intellectual Disability, Inherited Retinal Dystrophies, and Autism Spectrum Disorders. Within the use cases innovative digital tools, technologies and methods will be researched, developed and validated in real world scenarios.
The Department of Electronics, Information and Bioengineering Research Unit will work on overcoming cross-border barriers to health data integration, access, FAIRification, and preprocessing, and will handle the case of pediatric intellectual disability, dealing with the integration of genomic and phenotypic data from pediatric rare diseases.
The most imminent reasons why medical data is not heavily shared for research across institutional borders rely on ethical, legal and privacy aspects and rules. Data protection regulations prohibit data centralization for analysis purposes because of privacy risks like the accidental disclosure of personal data to third parties. Therefore, in order to (1) enable health data sharing across national borders, (2) fully comply with present GDPR privacy guidelines and (3) innovate by pushing research beyond the state of the art, the BETTER (Better rEal-world healTh-daTa distributEd analytics Research platform) project, funded by the European Union’s Horizon program and the UK Research and Innovation Program, proposes a robust decentralized infrastructure which will empower researchers, innovators and healthcare professionals to exploit the full potential of larger sets of multi-source health data via tailored made AI tools useful to compare, integrate, and analyze in a secure, cost-effective fashion, with the very final aim of supporting improvement of citizen's health outcomes.
In detail, the interdisciplinary project proposes 3 use cases involving 7 medical centers located in the EU and beyond, where sensitive patient data, including genomics, is made available and analyzed in a GDPR compliant. The proposed clinical use cases focus on evidence-based research on Pediatric Intellectual Disability, Inherited Retinal Dystrophies, and Autism Spectrum Disorders. Within the use cases innovative digital tools, technologies and methods will be researched, developed and validated in real world scenarios.
The Department of Electronics, Information and Bioengineering Research Unit will work on overcoming cross-border barriers to health data integration, access, FAIRification, and preprocessing, and will handle the case of pediatric intellectual disability, dealing with the integration of genomic and phenotypic data from pediatric rare diseases.