A systematic review and meta-data analysis of clinical data repositories in Africa and beyond: recent development, challenges, and future directions

Abstract

A Clinical Data Repository (CDR) is a dynamic database capable of real-time updates with patients' data, organized to facilitate rapid and easy retrieval. CDRs offer numerous benefits, ranging from preserving patients' medical records for follow-up care and prescriptions to enabling the development of intelligent models that can predict, and potentially mitigate serious health conditions. While several research works have attempted to provide state-of-the-art reviews on CDR design and implementation, reviews from 2013 to 2023 cover CDR regulations, guidelines, standards, and challenges in CDR implementation without providing a holistic overview of CDRs. Additionally, these reviews need to adequately address critical aspects of CDR; development and utilization, CDR architecture and metadata, CDR management tools, CDR security, use cases, and artificial intelligence (AI) in CDR design and implementation. The collective knowledge gaps in these works underscore the imperative for a comprehensive overview of the diverse spectrum of CDR as presented in the current study. Existing reviews conducted over the past decade, from 2013 to 2023 have yet to comprehensively cover the critical aspects of CDR development, which are essential for uncovering trends and potential future research directions in Africa and beyond. These aspects include architecture and metadata, security and privacy concerns, tools employed, and more. To bridge this gap, in particular, this study conducts a comprehensive systematic review of CDR, considering critical facets such as architecture and metadata, security and privacy issues, regulations guiding development, practical use cases, tools employed, the role of AI and machine learning (ML) in CDR development, existing CDRs, and challenges faced during CDR development and deployment in Africa and beyond. Specifically, the study extracts valuable discussions and analyses of the different aspects of CDR. Key findings revealed that most architectural models for CDR are still in the theoretical phase, with low awareness and adoption of CDR in healthcare environments, susceptibility to several security threats, and the need to integrate federated learning in CDR systems. Overall, this paper would serve as a valuable reference for designing and implementing cutting-edge clinical data repositories in Africa and beyond.