Systematic review of ethics and legislation of a Global Patient co-Owned Cloud (GPOC)

Abstract

Background The use of cloud-based storage for personal health records (PHRs) has significantly increased globally over the past thirty years. The four recently published GPOC Series articles introduced the concept of a Global Patient co-Owned Cloud (GPOC) for personal health records. The series includes a systematic review and meta-analysis, a summit, a sandbox, and a survey, with 100% participation from UN member states and key international health organisations. GPOC aims to establish patient co-ownership of PHRs, addressing integration and access challenges. Methods This study is built upon the published GPOC systematic review and meta-analysis that focused on examining cloud-based personal health records and elements such as data security, efficiency, performance, privacy and cost-based factors. However, this study selectively reviews the ethical, legislative and potential human rights dimensions of GPOC. Thus, it includes ethical aspects of co-ownership, rights, privacy, policies, and AI integration. The original study was PROSPERO registered with CRD42022342597, which serves as the foundation for the current study. Results This study offers a comprehensive global overview of ethics, legislation and initiatives by states and organisations. We analyse AI integration and future challenges for GPOC implementation. We present principles from ‘Ethics by Design’ and the ‘Principles of Biomedical Ethics’ by Beauchamp and Childress alongside the European General Data Protection Regulation (GDPR). The study presents a global overview of the relevant global latticework of legislation. Conclusions This study suggests that GPOC could potentially establish a new human right to patient co-ownership of personal health information. GPOC aims to facilitate global AI integration in healthcare and address existing challenges in PHR integration. A decentralised GPOC, supported by blockchain consensus, may offer benefits such as enhanced data security, interoperability, and equitable access to healthcare information globally. Thus, GPOC may have a positive impact on global health.