Ren’s account of living with Lyme disease and my own experience with allergies brought me to a question for PIXIE: how can we help someone carry their health story without making them start over every time?
Ren has publicly discussed his il…
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Ren’s account of living with Lyme disease and my own experience with allergies brought me to a question for PIXIE: how can we help someone carry their health story without making them start over every time?
Ren has publicly discussed his illness and treatment. His account belongs to him. My allergies belong to my experience. Putting them beside each other opens a conversation about what people need others to understand. Ren’s public update.
An article from the University of Minnesota helped sharpen that question. It discusses Lyme disease alongside other tick-related conditions, including alpha-gal syndrome. The CDC describes alpha-gal as a potentially serious allergy that can develop after a tick bite and cause reactions to mammalian products. That connection does not establish what caused my allergies. It gives me something to learn about, with room for questions. Read the article.
That distinction matters for the technology we build, too. A system should be able to hold what a person reports, what a clinician has documented, and what remains unresolved—without quietly turning a possibility into a diagnosis.
I’ve been looking at OpenMRS, an open-source medical-records project. It supports clinical documentation, configurable forms, permissions, and audit logs. It also welcomes contributors in writing, design, translation, and testing.
For PIXIE, I see a possible learning exercise: two fictional patient histories, one involving Lyme disease and another involving allergies. Contributors could examine whether the record preserves the timeline, reactions, treatments, uncertainty, and effects on everyday life.
Can the person correct something? Can the next clinician follow what happened? Does an unanswered question remain visible?
This is a proposed exercise, with invented records. There is no PIXIE–OpenMRS integration or partnership being announced.
The practical goal is modest and worth testing: help someone prepare a clearer account for a healthcare conversation, while keeping control over what they share.
Music can make us feel understood. I want the systems we build to make more room for understanding, too.