Discipline · 5 records

Patient data, informatics, and AI

Data structures, provenance, operational insight, patient narratives, and governed use of emerging AI capabilities.

Connected data structures, provenance, business rules, quality monitoring, and decision workflows across patient, device, and study operations.

Ultragenyx · 2019–2024

patient dataclinical informaticsdata productssemantic data

Data and AIDesign framework

Proposed a governed operating layer connecting cross-system data, trusted signals, interpretation, and accountable action across clinical trials.

March 2026 concept brief

Operational TelemetryC4I+Tcontrol towerCTMS

Data and AIExploratory work

Applied consent, provenance, human review, and controlled workflows to exploratory AI use in patient information and operations.

2024–2026 independent design work; earlier operating foundations

AILLMagentic workflowshuman in the loop

Data and AIExploratory work

Explored a consent-aware way to turn patient-authored narratives into useful health biographies and structured longitudinal information.

Independent work beginning in 2024

PatientStoriespatient narrativehealth biographypatient-generated data

Data and AIPublished framework

Extended Operational Telemetry into signal design, launch readiness, study execution, and traceable decisions across the trial lifecycle.

May 2026 paper and published website

TrialTelemetryTrial TelemetryRTCTreal-time clinical trials