Patient Data & Decentralized Web: The Key To A Healthier Future?

The recent UK government draft policy Data Saves Lives highlighted the real-life example of a young woman with asthma who had visited different health care services on 42 separate occasions. This was never the intention of Sir Tim Berners-Lee, inventor of the Web. The original vision was of a collaborative, connected space, where information was spread out and shared to provide secure, democratized, and decentralized access to public and private data. Now, issues around data privacy and information segregation have catalyzed the search for more innovative and fair models of information exchange: The decentralized Web 3.0. The latest update of the decentralized web is Solid, which is an ecosystem of interoperable specifications and standards that enables data to come together in decentralized personal online data stores (PODS). Put simply, the decentralized web decouples data from applications so that individuals can use it how and where they choose. Janeiro Digital has developed an interoperability platform called XFORM, to connect PODS on the decentralized web with existing systems and enable end-to-end user-consented data sharing. XFORM allows data and applications to be decoupled without disruption to existing systems and its integration framework is essential to decentralization success. Personal health records and patient information are often siloed between numerous services and data storage platforms. Patient records exist in large, siloed centralized  IT systems, making it incredibly difficult to share data between different healthcare teams and services. The creation of new digital transformation technologies around a patient-centered model of care within the NHS brings with it a different set of challenges around how data is stored and shared. The solution utilized XFORM, the data bridge, created by Janeiro Digital, and Solid PODS to retrieve and merge data from different NHS systems, using HL7’s Fast Healthcare Interoperability Resources (FHIR) Specification. The decentralized web represents more data, not less.