PACSOI

Solid for personalized patient journeys

About the project: From silos to integrated health data

In healthcare today, a person’s health data are mostly managed in separate silos. This data can range from clinical health records, over information about diet and exercises collected with mobile applications, to physical health data collected with wearables and sensors. This makes it hard to combine, share, and effectively use the information across various platforms.

This fragmentation obstructs a complete, integrated view of patients’ health, making it difficult for clinicians and researchers to use the full potential of the wide range of available data for improving patient diagnosis and outcomes, but also for clinical and population health research. On a larger perspective, it also limits the interoperability and standardization of clinical health data for policy makers. From a patient perspective, this leads to feeling less empowered about their health, incapability of having a complete overview of their health status and cumbersome exchange of knowledge between their healthcare providers.

The PACSOI project addresses this need for a more holistic, secure, and patient-controlled health data management system.

A scalable, decentralized solution

PACSOI aims to create a scalable, decentralized solution using “Solid”, a web-based framework for decentralized data storage, combined with “Linked Data” technologies.

This innovative system will ensure secure storage of diverse data types (e.g., clinical records, streaming data from sensors), facilitate scalable analytics across multiple, decentralized pods, and empower patients to manage consent over who accesses their health data.

The project will give patients control over their health data while enabling secure & privacy-preserving data sharing and consent management, in full compliance with necessary and applicable laws and regulations. It leverages the growing push towards decentralized data pods where patients store and control access to their health information.

Innovation goals and proof of concept

The project’s scientists will focus on a number of key innovation goals, aimed at improving data interoperability, privacy, and analytics. This includes the efficient conversion of complex health data to Linked Data, optimizing the storage of Linked Data in decentralized vaults , providing faster read/write operations, providing privacy enhancing techniques and a consent model, and providing scalable, federated analytics.

PACSOI will also deliver a solution for the secondary use of health data, addressing the critical need for ensuring GDPR compliance while enabling scalable, privacy-preserving research and policy making. Through this approach, patients will not only remain in control of their data through informed consent during data collection in the pod but will also experience a transparent patient journey throughout the entire data lifecycle .

The project partners will demonstrate the solution’s effectiveness through a proof-of-concept focused on obesity and related conditions, which will integrate data from 12 different sources for 200 patients. This will showcase how PACSOI can support decision making for both bariatric surgery and other treatments, while also helping individuals engage in life changing behaviors for better health outcomes.

PACSOI introduces an innovative approach to decentralized & trusted management of healthcare data. By providing a scalable and interoperable solution for integrating personal health data from diverse sources, PACSOI is set to improve patient outcomes, support clinical research, and foster innovation in personalized and preventive healthcare.

Partners

FAQIR Institute
FAQIR Foundation
AContrario
moveUP
Byteflies
IDLab - Ghent University - imec

More info