PACSOI

This makes it hard to combine, share, and effectively use the information across various platforms. It hinders a comprehensive and unified view of patients' health, limiting the ability of clinicians and researchers to fully leverage the vast range of available data to improve diagnosis, patient outcomes, and contribute to clinical and population health research. At a broader level, it also hampers the interoperability and standardization of clinical health data for policymakers.

From the patient's perspective, this results in feeling less empowered about their health, an inability to have a full overview of their health status, and a cumbersome exchange of information 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 and 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 pods, 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 and 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.”