Member protections
Your data rights
These are not aspirational commitments. They are technical guarantees built into the architecture of The Vault™ and The Citadel™.
The six guarantees
What Xanadu guarantees you
You retain legal ownership of your health data at all times. Xanadu is a custodian, not an owner. The trust structure means we cannot sell your data, cannot claim ownership, and cannot grant rights to third parties that you have not explicitly authorized.
You can export your complete health record in FHIR R4 format at any time, on demand. No support request. No waiting period. The export is machine-readable and can be imported into any FHIR-compatible system, including other health platforms.
When you delete your data, access to it is cut off immediately and it can no longer be used. Backups and logs are purged within 30 days. "Delete" on Xanadu means delete -- not hidden, not archived, not "will be processed."
You consent separately to data collection and to each category of research use. These are distinct technical controls, not bundled checkboxes. You can consent to sleep research and opt out of insurance actuarial use. Your preferences are enforced before any pool is assembled.
Every access event -- every time any system touches your data -- is recorded in an immutable, tamper-evident audit log that you can view. You see exactly which research pools included your data, when, and under what consent category.
When your de-identified data generates research licensing revenue, 80% of your share comes back to you. This is not a discretionary policy. It is encoded in the trust structure. The 80/20 Payout™ cannot be changed without member governance vote.
Legal framework
The laws behind your rights
Xanadu is designed to comply with and exceed the most stringent health data privacy laws in the United States.
Washington State's My Health MY Data Act (effective 2024) is the most comprehensive consumer health data privacy law outside HIPAA. It covers apps and services that HIPAA misses, requires separate consent for collection vs. sharing, and mandates geofencing restrictions within 2,000 ft of health facilities.
California's Consumer Privacy Rights Act gives consumers the right to know what data is collected, the right to delete, the right to opt out of sale, and the right to limit use of sensitive personal information. California SB 1223 extends protections to neural and brain-generated data.
Where Xanadu interfaces with HIPAA-covered entities (hospitals, insurers, their business associates), we apply HIPAA's Protected Health Information standards. HIPAA's Minimum Necessary rule is applied to all data flows: we only access the minimum data required for each stated purpose.
Special protections
Your most sensitive data gets extra protection
Mental health data is the most sensitive category in Xanadu. It is the category most frequently exploited (BetterHelp, Cerebral) and the one with the most direct human consequences when misused -- so it gets the strongest controls, and the same protections extend to every other high-risk category.
- Mental health diagnoses and therapy records require a separate, explicit consent action.
- Mental health data is excluded from all research pools by default.
- You must affirmatively opt in to any mental health data research category.
- Mental health data is never combined with behavioral or location data for research purposes without separate consent.
- "Limit Use of My Sensitive Info" controls are provided as required by CA SB 1223.
The law singles out several categories as especially sensitive. Each gets the same heightened controls as mental health data:
- Genetic and genomic data
- Reproductive and sexual-health data
- Substance-use and recovery records
- Biometric and neural / brain-generated data (CA SB 1223)
- Precise location near health facilities (WA MHMDA geofencing)
Separate, explicit opt-in. Excluded from research pools by default. Never combined with other data for research without your specific consent.
These rights apply from day one.
Join the founding cohort and have input into the governance rules that protect them in perpetuity.
Join the waitlist