Mithras Chronic conditions · 6 field notes
Chronic conditions
Chronic disease is where data fragmentation hurts most: six specialists, six portals, and decades of lived documentation nobody can use. These pieces look at the gap from the patient side — starting with interstitial cystitis, our flagship cohort.
6 of 50 field notes · Chronic conditions · plain language
The journal holds 50 field notes across 7 sections: Patient rights (8), Privacy & de-identification (8), Standards & interoperability (8), Regulation worldwide (8), Research methods (8), Chronic conditions (6), Principles (4). You are viewing the Chronic conditions section.
Six specialists, six portals: the fragmentation problem in chronic disease
Why medical records end up scattered across multiple providers in chronic disease, what fragmentation costs patients and research, and the realistic fix.
№ 09 Chronic conditionsYour medical paper trail is a research asset. Treat it like one
How to organize medical records for chronic illness: complete copies, machine-readable formats, and a consistent symptom log that doubles as research data.
№ 15 Chronic conditionsInterstitial cystitis / bladder pain syndrome: why research has been so hard
Why interstitial cystitis / bladder pain syndrome research has lagged — diagnostic ambiguity, mixed phenotypes, small trials — and what changes it.
№ 19 Chronic conditionsUnderfunded conditions: what 28 diseases on one platform makes possible
Underfunded disease research stalls when each condition builds its own registry. What a shared consent, privacy, and audit spine across 28 conditions changes.
№ 30 Chronic conditionsThe data gap for invisible illnesses — and how patients close it
Why an invisible chronic illness research data gap exists for fibromyalgia, IBS, ME/CFS, and IC — and how patient-reported data is starting to close it.
№ 40 Chronic conditionsHow patient communities move research when institutions can't
Real examples of patient community driven research: the PatientsLikeMe lithium study, cystic fibrosis venture philanthropy, the patients who named Long Covid.