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

Abstract

<ns4:p> Background The use of cloud-based storage for <ns4:italic>personal health records</ns4:italic> (PHRs) has significantly increased globally over the past thirty years. The four recently published GPOC Series articles introduced the concept of a <ns4:italic>Global Patient co-Owned Cloud</ns4:italic> (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 ‘ <ns4:italic>Ethics by Design</ns4:italic> ’ and the ‘ <ns4:italic>Principles of Biomedical Ethics</ns4:italic> ’ by Beauchamp and Childress alongside the <ns4:italic>European General Data Protection Regulation</ns4:italic> (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. </ns4:p>

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