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Background The use of Cloud-based storage of personal health records has increased globally. The GPOC Series introduces the concept of a Global Patient co-Owned Cloud (GPOC) of personal health records. Here, we present the GPOC Series’ international survey on the necessity of a GPOC. Methods Online global survey with invitations sent to health ministries and major organisations. It received answers from health ministries and affiliated advisors of all 193 United Nations (UN) member states, 2 UN observer states (Holy See & Palestine) and 1 de facto UN non-member state (Taiwan) and from 18 major international organisations. The survey examined a dozen aspects encompassing demographics, privacy, sharing, movability, co-ownership, research, company usage, regulation and the necessity of a GPOC. Results The GPOC Survey elicited responses from 267 individuals from 214 entities, including all UN member states, and major international organisations. Twelve domains were identified, covering demographics, correctness, privacy, commercial use, medical and non-medical research, co-ownership, data sharing, record movement, ownership centralisation, patient rights, environmental concerns, and foundation creation. Results show high agreement on most issues, including support for co-ownership (89%) and movement of personal health records (84%). Disagreement was prominent regarding centralised ownership by the state (64%) and data sharing without consent (85%). Additionally, respondents expressed interest in a neutral, decentralised foundation for regulation (73%) and the environmental sustainability of electronic health records (84%). Conclusions A Global Patient co-Owned Cloud (GPOC) of personal health records could significantly enhance patient independence and involvement in health management, supported by the near consensus agreement across various domains identified in our survey. This consensus underscores the potential of GPOC to democratise healthcare and align with UN Sustainable Development Goals (SDGs). The survey results demonstrate strong support for GPOC’s role in promoting evidence-based patient management, reducing information silos, and fostering ethical data sharing. Moreover, the overwhelming agreement on key principles of co-ownership, data sharing, and environmental sustainability highlights the global inclination for a decentralised, patient-controlled PHR platform. This platform stands to empower patients worldwide, advance precision medicine, and contribute to the global development and dissemination of artificial intelligence in healthcare.
Background The use of Cloud-based storage of personal health records has increased globally. The GPOC Series introduces the concept of a Global Patient co-Owned Cloud (GPOC) of personal health records. Here, we present the GPOC Series’ international survey on the necessity of a GPOC. Methods Online global survey with invitations sent to health ministries and major organisations. It received answers from health ministries and affiliated advisors of all 193 United Nations (UN) member states, 2 UN observer states (Holy See & Palestine) and 1 de facto UN non-member state (Taiwan) and from 18 major international organisations. The survey examined a dozen aspects encompassing demographics, privacy, sharing, movability, co-ownership, research, company usage, regulation and the necessity of a GPOC. Results The GPOC Survey elicited responses from 267 individuals from 214 entities, including all UN member states, and major international organisations. Twelve domains were identified, covering demographics, correctness, privacy, commercial use, medical and non-medical research, co-ownership, data sharing, record movement, ownership centralisation, patient rights, environmental concerns, and foundation creation. Results show high agreement on most issues, including support for co-ownership (89%) and movement of personal health records (84%). Disagreement was prominent regarding centralised ownership by the state (64%) and data sharing without consent (85%). Additionally, respondents expressed interest in a neutral, decentralised foundation for regulation (73%) and the environmental sustainability of electronic health records (84%). Conclusions A Global Patient co-Owned Cloud (GPOC) of personal health records could significantly enhance patient independence and involvement in health management, supported by the near consensus agreement across various domains identified in our survey. This consensus underscores the potential of GPOC to democratise healthcare and align with UN Sustainable Development Goals (SDGs). The survey results demonstrate strong support for GPOC’s role in promoting evidence-based patient management, reducing information silos, and fostering ethical data sharing. Moreover, the overwhelming agreement on key principles of co-ownership, data sharing, and environmental sustainability highlights the global inclination for a decentralised, patient-controlled PHR platform. This platform stands to empower patients worldwide, advance precision medicine, and contribute to the global development and dissemination of artificial intelligence in healthcare.
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.
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.
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