PACSOI is a two-year research project (started September 2024) focused on enabling secure and decentralized use of personal health data. Today, healthcare data is trapped in silos, making it difficult to combine personal, clinical, and real-world data for meaningful insights—especially for patients with chronic or complex conditions who receive care across multiple providers.

PACSOI addresses this challenge by exploring personal data vaults: secure, individual-controlled storage where patients decide who can access their health data at any time. This approach not only enables a complete view of the patient journey across care settings but also supports privacy-preserving analytics for secondary data use.

To achieve this, PACSOI is developing beyond–state-of-the-art innovations in:

• Data integration – transforming multimodal health data into interoperable Linked Data.

• Storage optimization – ensuring efficient, scalable, and transparent data retrieval.

• Privacy & security – advancing encryption and privacy-preserving methods.

• Dynamic consent – creating a legal framework and policy language for patient-driven control.

• Analytics & insights – enabling real-time, privacy-preserving health insights across distributed data.

PACSOI will demonstrate these innovations through a proof-of-concept focused on the obesity patient journey.

The project brings together digital health companies (Byteflie, MoveUp), legal experts (Acontrario), secure storage and integration specialists (FAQIR Institute & Foundation), and three leading research groups (IDLab DISCOVER, KNoWS, PREDICT). A diverse user committee provides guidance, real-world data, and use case validation.