patientgenerated

Patientgenerated refers to health data produced by patients about their own health, outside traditional clinical encounters. The concept encompasses patient-reported information and data collected by individuals using devices and apps for self-monitoring, with the aim of informing care, research, and public health.

Types include patient-reported outcomes and symptom diaries, treatment adherence logs, and data from home monitoring devices such as blood pressure cuffs, glucose meters, or activity trackers. Patient narratives and notes entered into mobile apps also fall under patientgenerated.

Uses and benefits: In clinical care, PGHD can fill gaps between visits, support remote monitoring, and enable more personalized decision making. In research, it expands data collection to real-world settings. For patients, involvement can improve engagement and outcomes, but requires systems to receive, store, and interpret data.

Challenges: Data quality and reliability can vary; there are concerns about missing data, measurement bias, and interoperability with electronic health records. Clinicians may face workload and workflow integration issues. Privacy, consent, ownership, and security are important considerations, particularly when data cross between consumer devices and healthcare systems, and when data processing falls under privacy laws such as HIPAA or GDPR.

Standards and governance: Efforts to standardize PGHD use HL7 FHIR resources and open specifications to enable intake into electronic health records. Initiatives from health IT and patient advocacy groups promote shared vocabularies and interoperable data models. Ethical and regulatory considerations emphasize patient control over data sharing and transparent use in care and research.