HEREDITARY is transforming the diagnosis and treatment of neurodegenerative and gut microbiome-related diseases through a secure and interoperable framework that integrates multimodal health data while ensuring privacy. The project focuses on neurodegenerative and gut microbiome-related diseases, harmonizing clinical, genomic, and environmental data to unlock previously impossible insights. Specifically, this means bringing together data currently scattered across different and often incompatible archives, allowing physicians and researchers to gain a more comprehensive view of patients and diseases, thus improving both research and clinical decisions.
From this perspective, integrated healthcare data management is the foundation of the healthcare of the future. Studying these diseases presents significant challenges in connecting sources and archives, often constructed with different logics. Each hospital, laboratory, and project collects information in its own way, making it difficult to compare and use it together. For this reason, managing complex and diverse data archives is one of the project’s main objectives: HEREDITARY works to organize, connect, and make these data usable, developing secure data consultation systems and testing Federated Learning approaches that can simplify data management and sharing.
The potential is revolutionary in terms of quality of care, system efficiency, and citizen empowerment. Better-connected data allows for faster diagnoses, more targeted therapies, and more sustainable management of healthcare resources. Citizens can also be more engaged and informed about their health choices. However, the path to fully realizing these opportunities is complex and requires a thoughtful approach that promotes technological innovation without neglecting fundamental patients’ rights, such as privacy, security, and equality. In other words, technology must go hand in hand with protection, so that the benefits are real and accessible to all.
Observa’s role within this project focuses on managing public engagement activities, promoting dialogue with patients, caregivers, associations, and citizens, and facilitating their involvement in research processes. Through meetings, discussions, and participatory initiatives of this kind, HEREDITARY helps integrate people’s real needs into the development of solutions, strengthening trust and the social impact of health data research.
