Mithras Patient rights · 8 field notes
Patient rights
Your medical records are about you, generated from your body, your symptoms, your time — and yet your rights over them are scattered across statutes, portals, and fine print. These pieces map what you can demand, what you can refuse, and what a fair deal for research use of your data looks like.
8 of 50 field notes · Patient rights · 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 Patient rights section.
What revocable consent really means — and why most 'consent' isn't
Revocable consent for health data, explained: stopping future use as fast as a yes, keeping the audit intact, and being honest about published aggregates.
№ 01 Patient rightsShould patients be paid when research uses their data?
Should patients be paid for health data? The case for participation fees, the honest counterarguments, and why IRB-approved fair-market fees are a middle path.
№ 23 Patient rightsFrom Henrietta Lacks to data dividends: research without asking
From Henrietta Lacks to the Havasupai and deCODE Iceland: a short history of research without consent, the ethics it forced, and the data-dividend answer today.
№ 28 Patient rightsHow to download your own health data as FHIR — portals, APIs, and apps
How to download your health records as FHIR data using patient portals, Patient Access APIs, and SMART on FHIR apps — and why structured copies beat PDFs.
№ 33 Patient rightsHow health data gets bought and sold — and what you can do about it
How data brokers buy and sell medical data through the de-identified loophole outside HIPAA, why opting out rarely works, and what a patient-mediated model changes.
№ 39 Patient rightsYour right to a copy: getting your full medical record under HIPAA and GDPR
How to request medical records under HIPAA's right of access and GDPR Article 15 — deadlines, fees, formats, and what to do when a provider stonewalls you.
№ 44 Patient rightsBroad consent vs. dynamic consent: what patients actually agree to
Broad consent vs dynamic consent in research: what one biobank signature commits you to, what per-study consent gives back, and why the difference builds trust.
№ 50 Patient rightsWho actually owns your medical records? It depends where you live
Who owns medical records? In most US states the provider owns the chart and you own access rights; under GDPR you hold rights, not property. What that means.