Advancing Personal Health Data Spaces for Enhanced Care Continuity

Personal Health Data Spaces (PHDSs) are emerging as key infrastructures for secure, patient-centred continuity of care. Unlike traditional Electronic Health Records, PHDSs enable individuals to own and control their health information across institutional and national contexts. They provide a unified environment for integrating heterogeneous data sources, including clinical records, genomic data, data from wearable sensors, and patient-reported outcomes. In this way, PHDSs can support patients in managing their health while also enhancing the work of clinicians, researchers, and health system operators.

However, the adoption of PHDSs faces significant challenges. Governance arrangements are often fragmented, standardisation efforts remain incomplete, and many patients lack sufficient digital health literacy to engage effectively with complex data ecosystems. Establishing robust semantic interoperability across diverse technical systems is demanding. In addition, concerns about data custody, trust, security, and the responsible secondary use of sensitive personal data are central and unresolved in many settings. Regulatory variation and differing approaches, such as those exemplified by the European Health Data Space, continue to complicate cross-border care and international data exchange.

This Research Topic aims to synthesise existing knowledge and innovative strategies for advancing PHDSs. It seeks to offer a critical assessment of their technological foundations, governance models, legal and ethical implications, and user-adoption dynamics. Contributions may address, including but not limited to, the following themes:

• PHDS architectures and core infrastructures, including storage models, content-addressable solutions, knowledge-graph-based approaches, and integration with clinical workflows and decision-support tools

• Interoperability and standardisation across PHDSs, with a focus on semantic integration, common data models, and mechanisms that support secure and reliable cross-border data exchange

• Governance, trust, and regulatory frameworks for PHDSs, including models of data custody, approaches to informed consent, oversight and accountability structures, and international and national regulatory initiatives

• Security, privacy, and risk management in PHDS ecosystems, including cryptographic techniques, privacy-preserving access-control mechanisms, cyber-threat modelling, and approaches to ensuring data provenance and integrity for trustworthy clinical decision support

• Patient agency and user engagement, including strategies to strengthen patient empowerment, digital health literacy, and meaningful participation in the management and sharing of personal health data

• Secondary uses of PHDS data for research and innovation, including privacy-preserving analytics, synthetic data generation and use, and frameworks for safety and quality assurance for both real-world and synthetic datasets derived from PHDSs

• The role of artificial intelligence and decision support in PHDS ecosystems, including methods for trustworthy and transparent AI, mechanisms for ensuring safety and reliability, and evidence of expected and observed impacts on clinical processes and outcomes

By bringing together perspectives from multiple disciplines, this Research Topic seeks to clarify the current state of PHDS design, implementation, and evaluation, identify persistent gaps, and outline priorities for future development. The overarching aim is to deepen understanding of how PHDSs can most effectively support continuity of care, strengthen trust among stakeholders, and foster resilient, patient-centred healthcare ecosystems. Submissions are invited in a range of formats, including original research articles, reviews, methods papers, and perspectives.

Article types and fees

This Research Topic accepts the following article types, unless otherwise specified in the Research Topic description:

• Brief Research Report
• Case Report
• Classification
• Clinical Trial
• Community Case Study
• Curriculum, Instruction, and Pedagogy
• Data Report
• Editorial
• FAIR² Data
• ... View all formats

Articles that are accepted for publication by our external editors following rigorous peer review incur a publishing fee charged to Authors, institutions, or funders.

Article types

This Research Topic accepts the following article types, unless otherwise specified in the Research Topic description:

• Brief Research Report
• Case Report
• Classification
• Clinical Trial
• Community Case Study
• Curriculum, Instruction, and Pedagogy
• Data Report
• Editorial
• FAIR² Data
• General Commentary
• Hypothesis and Theory
• Methods
• Mini Review
• Opinion
• Original Research
• Perspective
• Policy and Practice Reviews
• Policy Brief
• Review
• Study Protocol
• Systematic Review
• Technology and Code

Keywords: data interoperability, patient empowerment, semantic integration, health data governance, cross-border care, personal health data spaces, patient-centered continuity of care, enablers, challenges and barriers, technical solutions and architectures

Important note: All contributions to this Research Topic must be within the scope of the section and journal to which they are submitted, as defined in their mission statements. Frontiers reserves the right to guide an out-of-scope manuscript to a more suitable section or journal at any stage of peer review.