PACSOI is project focused on enabling Solid for healthcare. It’s a two-year project started 1/06/2024.
Project aim: Healthcare ecosystems are siloed which makes it difficult to integrate personal health data with clinical data, access and jointly analyze it to generate meaningful insights. These silos are even more challenging for the increasingly common remote monitoring & digital therapeutics tools that gather real-world data & insights. This creates a barrier to leverage these data to achieve a holistic & longitudinal view on the patient’s condition. This is especially troubling for patients with chronic or complex conditions who receive care from multiple providers across settings. Currently, the ownership, control, transparency & consent of health data use & insight generation are outlined in data processing agreements between patients, care providers & third-party companies. This is a complex & time-consuming process, lacking patient involvement in data control decisions, which raises ethical concerns.
Therefore, PACSOI wants to enable decentralized & secure storage of personal health data in which individuals store their data in personal data vaults & are able to decide at every moment who has access to specific data. This will enable tracking the patient’s complete health journey across providers and care paths. Moreover, PACSOI wants to enable scalable, efficient and privacy-preserving analytics across these decentralized vaults to enable value-adding secondary use of data.
To realize this goal PACSOI needs to realize beyond-SOTA innovations to be able to
- consolidate the multimodal health data into Linked Data by designing efficient & scalable conversion algorithms & standards,
- optimize storage & data retrieval for different data modalities by automatically determining the optimal storage solution transparently to the end user,
- design encryption and privacy-preserving methods for Linked Data storage & retrieval without too much overhead or hampering question answering capabilities,
- realize dynamic informed consent in decentralized ecosystem through the inception of a legal framework and the design of a policy language to express it and enforce it in scalable & efficient manner, and
- allow for patient insights & secondary use of data by designing aggregators to enable near real-time question answering & orchestrators and federated graph analytics to generate insights in a privacy-preserving manner.
PACSOI aims to showcase these results through a joint obesitas patient journey PoC.
PACSOI brings together Byteflie & MoveUp, 2 digital health companies, with FAQIR Institute & FAQIR Foundation, who aim to facilitate secure storage solutions, data integration & query services for decentralized health data, ACL, experts in data protection & privacy law, and 3 research groups (IDLab DISCOVER, KNoWS, PREDICT) specialized in (scalable) Semantic Web technologies, encryption/anonymization, Solid & (federated) health analytics. A user committee representing a wide range of the stakeholders is involved as a soundboard, data provider & use case partner.