Necessity for a global patient co-owned cloud (GPOC)

Abstract

BackgroundThe 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.MethodsOnline 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.ResultsThe 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%).ConclusionsA 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.