The widespread use of electronic health records (EHRs) and healthcare information systems (HISs) has led to isolated data silos across healthcare providers, and current interoperability standards like FHIR cannot address some scenarios. For instance, it cannot retrieve patients’ health records if they are stored by multiple healthcare providers with diverse interoperability standards or the same standard but different implementation guides. FHIR and similar standards prioritize institutional interoperability rather than patient-centered interoperability. We explored the challenges in transforming fragmented data silos into patient-centered data interoperability. This research comprehensively reviewed 56 notable studies to analyze the challenges and approaches in patient-centered interoperability through qualitative and quantitative analyses. We classified the challenges into four domains and categorized common features of the propositions to patient-centered interoperability into six categories: EMR integration, EHR usage, FHIR adaptation, blockchain application, semantic interoperability, and personal data retrieval. Our results indicated that “using blockchain” (48%) and “personal data retrieval” (41%) emerged as the most cited features. The Jaccard similarity analysis revealed a strong synergy between blockchain and personal data retrieval (0.47) and recommends their integration as a robust approach to achieving patient-centered interoperability. Conversely, gaps exist between semantic interoperability and personal data retrieval (0.06) and between FHIR adaptation and personal data retrieval (0.08), depicting research opportunities to develop unique contributions for both combinations. Our data-driven insights provide a roadmap for future research and innovation.

Blockchain technology is a fast-evolving sector that has proposed value in different domains. A distributed health care system for managing electronic medical records has various significant advantages in comparison to centralized health care systems. In a distributed system without a central authority, many threats such as data leakage by human mistake or a single point of failure are no longer feasible. A small number of recent research have proposed health care systems that have used IPFS and Blockchain as part of their security and storage components. Both have a transparent process and clear logic as a distributed system. In emergency care, access to medical records is an indisputable need to make efficient decisions fast. Current regulatory and bureaucratic processes make it near impossible to serve the data in a timely manner. This research designs a model of a break-glass mechanism for EMR management systems to provide access to healthcare professionals just in case of emergency. This conceptual model provides access to patients' records regarding patient privacy and data security, which they set previously by themselves.

Chronic disease is a major problem that does not have a clear treatment. Several researchers from other fields than health, such as information systems and artificial intelligence, focus on presenting a system to help these patients. Designing a system to monitor chronic diseases presents designers with several obstacles. Studying possible design techniques and common functionalities prolong the design process. This research focuses on helping designers to decreases the primary design steps by presenting some common functionalities and techniques. We focused on creating an understanding of Decentralization and modularity in the pervasive healthcare systems as a method to increase Interoperability in healthcare software’s for chronic diseases. We focused on these two quality attributes (Modularity and Decentralization) because the nature of chronic disease needs monitoring and continuous surveillance. Additionally, New technologies and innovation emerge for chronic disease everyday. Decentralization can be implemented by combining Blockchain and IPFS technologies and Modularity can be implemented by list of features (functionalities). We have reviewed several published healthcare systems and frameworks in this domain to do a comparative analysis of the functionality on the proposed systems and frameworks based on their similarities and differences. Therefore, we identify functionalities by using a comparative analysis of the architectural elements of each existing system and framework. Afterward, the analysis results aggregated into features list. System designers can propose new systems for chronic diseases more timely with having a list of proposed features and techniques as their feasible options. The results of this research facilitate the design and reduce the time of the design process.