Patientowned

Patientowned is a term used to describe health information and related data assets that are owned and controlled by patients rather than by healthcare providers. In a patientowned model, patients have primary rights to access, portability, consent, and decision-making about how their data are stored, used, and shared across systems.

Scope and components include electronic health records held by patients, personal health records (PHRs), patient-generated health data from devices (wearables, home tests), genomic and biomedical data, and consent-driven research data. Ownership implies mechanisms for data transfer and sharing that are governed by patient consent, enabling data to move between providers, researchers, and applications as authorized by the patient. Governance and provenance are important to ensure accuracy, traceability, and accountability.

Technology and standards supporting patientowned data often rely on interoperable APIs and consent management tools. Standards such as FHIR (Fast Healthcare Interoperability Resources) and OAuth-based access frameworks facilitate secure data exchange. Data portability and privacy-preserving practices are central, as are patient-centric approaches to data stewardship, consent revocation, and data provenance.

Legal and policy contexts vary by jurisdiction but commonly include rights to access and port data, and to authorize or restrict sharing. In the United States, HIPAA provides access rights; in the European Union, GDPR emphasizes data portability and control. Data protection laws, along with evolving data-sharing policies and consumer health tech regulations, shape how patientowned data can be collected, stored, and used.

Benefits of patientowned data include improved patient engagement, more complete and accurate records, enhanced care coordination, and expanded opportunities for research with informed consent. Challenges include privacy and security risks, data fragmentation, digital divides, and ensuring meaningful interoperability across systems.