A Decentralized Identity System for Accelerating Medical Communications within Rare Disease Communities

This paper presents a blockchain-based architecture for facilitating clinical communications within the historically underfunded rare disease community. Due to the complex nature of diagnosing and treating these conditions, patients with rare diseases are often referred to multiple care providers and specialists. Each care provider instructs patients to provide identification information to onboard them to their in-house medical record system. An effective identity management service or platform is needed to avoid repetitive steps and to identify patients in a scalable, collaborative, and sustainable way. This work proposes a decentralized, blockchain-based identity management infrastructure driven by interoperability across data management systems to accurately identify unique patients within rare disease communities and provide a supporting platform that facilitates the management and exchanges of information about identities. The proposed system identifies and represents participants with specific roles using a domain-specific digital identifier model. Once a patient's information is certified by a verifier, a Unique Digital Identifier is created for them that is linked to a persistent document holding their “cyber” identity. This allows the patient to identify themselves by presenting only the digital proof of their Unique Digital Identifier ownership during the subsequent medical encounters. Overall, we present a conceptual framework that allows for the fast identification of patients in the rare disease community that minimizes duplication of entries. It also enables providers and researchers to receive updates and exchange knowledge about rare diseases in an unambiguous way.