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Blockchain and distributed ledger technologies (DLT) are emerging decentralized infrastructures touted by researchers to improve existing systems that have been limited by centralized governance and proprietary control. These technologies have shown continued success in sustaining the operational models of modern cryptocurrencies and decentralized finance applications (DeFi). These applications has incentivized growing discussions in their potential applications and adoption in other sectors such as healthcare, which has a high demand for data liquidity and interoperability. Despite the increasing research efforts in adopting blockchain and DLT in healthcare with conceptual designs and prototypes, a major research gap exists in literature: there is a lack of design recommendations that discuss concrete architectural styles and domain-specific considerations that are necessary for implementing health data exchange systems based on these technologies. This paper aims to address this gap in research by introducing a collection of design patterns for constructing blockchain and DLT-based healthcare systems that support secure and scalable data sharing. Our approach adapts traditional software patterns and proposes novel patterns that take into account both the technical requirements specific to healthcare systems and the implications of these requirements on naive blockchain-based solutions. 

Patients often have their healthcare data stored in centralized systems, leading to challenges when reconciling or consolidating their data across providers due to centralized databases that store patient identities. The challenges disrupt the flow of patient care where time is sensitive for both patients and providers. Decentralized technologies have enabled a new identity model–Self-Sovereign Identity (SSI)–that grants individuals the right to freely control, access, and share their own data. This work proposes a system that achieves SSI in a semi-permissioned blockchain network using an open protocol as the certificate of authority and several guidelines for securely handling transactions in the network. Open protocols like Keccak can grant access to a permission-based network such as Hyperledger Fabric. The network architecture ensures data security and privacy through mechanisms of multi-signature transactions and guidelines for storing transactions locally, making this architecture ideal for privacy-centered use cases, such as healthcare data-sharing applications. The ultimate goal is to give patients full control over their identity and other data derived from their identity within a semi-permissioned network. 

This paper presents a novel framework for creating a recoverable rare disease patient identity system using blockchain and smart contracts, decentralized identifiers (DIDs), and the InterPlanetary File System (IPFS). Smart contracts are executable code that can be written into decentralized storage such as blockchains in order to enable tamper-proof transactions of data. DIDs provide a secure, decentralized, and extensible way to create, store, and manage digital identities, while IPFS provides a distributed, immutable, and secure storage system for patient identities. Utilizing these technologies with smart contracts, we created a framework to store persistent medical records of patients. Smart contracts additionally allow account recovery without the use of any centralized authority. The framework enables healthcare providers to securely access a patient's data while maintaining the patient's ownership of their data. The paper explores the advantages of using a decentralized identity system and highlights the potential of this approach to improve the security and universality of medical records for patients with rare diseases.