HealthBridge: A Decentralized and Interoperable Healthcare App for Rare Disease Communities

Traditional centralized database systems share many weaknesses, including the overhead of sharing medical documentation, data fragmentation, and susceptibility to centralized data attacks. Those problems would especially influence rare disease patient communities given their higher need for medical data interoperability and security. In this paper, we present an alternative approach to managing healthcare data that is tailored to the rare disease community. Specifically, we design and implement HealthBridge, a decentralized and interoperable mobile application with distributed ledger technology. The underlying permissioned network utilizes Hyperledger Fabric and has a modular design, empowering efficient data transactions directly between trusted entities with predefined smart contracts that regulate access permissions. For the application design, we focus on the needs of the rare disease community, prioritizing ease of use without compromising data security. In particular, our application provides a delegate feature, aimed at supporting rare disease patients with additional needs. Through this feature, if needed, patients can grant pre-defined access permissions to delegates through smart contracts. While the overall implementation of HealthBridge is still in the developmental stages, it presents a proof of concept and a promising system to support the underfunded rare disease community in terms of healthcare interoperability through a permissioned blockchain network.