My medical narratives
These narratives document my own experiences as a patient — from birth through childhood cancer and into early adulthood — alongside family medical history and curated resources from the broader literature. They are offered here for students of health informatics as primary source material: real medical encounters, real records, and the real human experience of moving through a healthcare system.
Each narrative traces not only the clinical events but the data those events generated — the forms filled out, the tests ordered, the reports written, the records retained or lost. My hope is that reading them alongside traditional informatics curricula helps ground abstract concepts in lived experience, and that encountering medicine from the patient’s side sharpens your understanding of what it means to design systems that serve people.
My narratives
- Birth narrative — May 24, 1968
- Wilms tumor narrative — March–April 1976
- Peritonitis and carcinoid narrative — May–June 1983
Resources
- Published narratives — A curated bibliography of patient, clinician, and family perspectives on illness and healthcare
- Transformations of medical texts with LLMs — Experiments using large language models to extract clinical information from real medical records