This session will explore how Solid is being applied to transform medical and health data interoperability, enabling research collaboration without compromising privacy, compliance, or institutional control. The session unites four pioneering initiatives that exemplify Solid’s potential to bridge institutional silos, empower individuals, and enhance the reproducibility and trust of biomedical research.
The session contains 4 presentations of 20 minutes with some time to discuss and deep-dive into the different topics:
The healthcare and biomedical research communities face a fundamental challenge: how to enable data collaboration across institutions and borders without compromising privacy, compliance, or data sovereignty. This session brings together three pioneering initiatives demonstrating how the Solid ecosystem is transforming medical data management and interoperability—from rare disease research to preventive health and clinical imaging.
The first presentation, led by the University of Oxford, introduces a cross-university collaboration underpinned by Solid Pods to host sensitive patient datasets on Nemaline Myopathy, a rare neuromuscular disorder. Across a consortium of 14 universities, each institution retains full control of its data while enabling federated queries for aggregated insights. The system ensures compliance with data-sharing regulations and will ultimately provide evidence to inform drug regulators about treatment outcomes and survivability.
The second presentation, from VITO (Belgium), showcases the WellData project, a personal data space for preventive health built using Solid as the backbone for interoperable, cross-border data exchange. WellData integrates health and lifestyle applications to empower individuals with control over their data while enabling research and innovation in public health. The project demonstrates how Solid’s decentralized architecture can enable privacy-preserving collaboration across Europe’s emerging health data space.
In the third presentation, Stony Brook University presents a Pathology Whole Slide Imaging (WSI) Management System designed to support the full research life cycle of digital pathology images. The system manages ingestion of diverse imaging formats (Olympus VSI, Aperio SVS, DICOM, NGFF, NDPI, etc.), facilitates expert annotation, supports deep-learning pipeline training and validation, and iteratively refines training data through human-AI collaboration. Its linked data model, designed in alignment with Solid and W3C Linked Web Storage, integrates with ongoing work on an RDF representation of DICOM through the FHIR RDF Working Group.
The fourth presentation, from EverBetter (USA), showcases the Paath project, a personal health record (PHR) powered by a Patient AI Agent built on Solid. Paath integrates automated data acquisition, clinical lab retrieval, and appointment management to empower individuals with proactive control over their health. The project demonstrates how Solid’s decentralized architecture allows AI agents to securely bridge the gap between patients and clinicians within a privacy-preserving medical ecosystem.
Together, these projects demonstrate a coherent vision: Solid enables trusted, decentralized, and semantically rich data sharing for medical research. By connecting rare disease registries, personal health spaces, and clinical imaging workflows, they illustrate how Solid’s principles can bridge institutional silos and empower both patients and researchers in the next generation of health data infrastructure.
Jackson Morgan (USA), SetMeld, jackson@setmeld.com
Frederik Byl (Belgium), Vito, frederik.byl@vito.be
Elfi Goesaert (Belgium), Vito, elfi.goesaert@vito.be
Erich Bremer (USA), Stony Brook University, erich.bremer@stonybrook.edu