PbDinEHR: A Novel Privacy by Design Developed Framework Using Distributed Data Storage and Sharing for Secure and Scalable Electronic Health Records Management

Privacy in Electronic Health Records (EHR) has become a significant concern in today’s rapidly changing world, particularly for personal and sensitive user data. The sheer volume and sensitive nature of patient records require healthcare providers to exercise an intense quantity of caution during EHR implementation. In recent years, various healthcare providers have been hit by ransomware and distributed denial of service attacks, halting many emergency services during COVID-19. Personal data breaches are becoming more common day by day, and privacy concerns are often raised when sharing data across a network, mainly due to transparency and security issues. To tackle this problem, various researchers have proposed privacy-preserving solutions for EHR. However, most solutions do not extensively use Privacy by Design (PbD) mechanisms, distributed data storage and sharing when designing their frameworks, which is the emphasis of this study. To design a framework for Privacy by Design in Electronic Health Records (PbDinEHR) that can preserve the privacy of patients during data collection, storage, access and sharing, we have analysed the fundamental principles of privacy by design and privacy design strategies, and the compatibility of our proposed healthcare principles with Privacy Impact Assessment (PIA), Australian Privacy Principles (APPs) and General Data Protection Regulation (GDPR). To demonstrate the proposed framework, ‘PbDinEHR’, we have implemented a Patient Record Management System (PRMS) to create interfaces for patients and healthcare providers. In addition, to provide transparency and security for sharing patients’ medical files with various healthcare providers, we have implemented a distributed file system and two permission blockchain networks using the InterPlanetary File System (IPFS) and Ethereum blockchain. This allows us to expand the proposed privacy by design mechanisms in the future to enable healthcare providers, patients, imaging labs and others to share patient-centric data in a transparent manner. The developed framework has been tested and evaluated to ensure user performance, effectiveness, and security. The complete solution is expected to provide progressive resistance in the face of continuous data breaches in the patient information domain.