Privacy Policy

1. Our Commitment

Deeply Health (“Deeply,” “we,” “us”) is committed to protecting your privacy. We built this platform because we know what it's like to live with a rare chronic condition - and we know that trust is everything when it comes to health data.

Your medical condition, treatment history, and personal health information are yours. Sensitive fields are encrypted before they are written to the database, and the keys are held separately from the records they protect. Nobody at Deeply Health has a staff screen where they can open your health records: our systems decrypt your data to show it back to you, and every access to health data is written to an audit log. We never sell your data. We never share your condition status with third parties without your permission.

2. Information We Collect

To provide our services, we collect:

• Account information: name, email address, authentication method, and profile details you choose to share.
• Health information: condition type, treatment logs, bleed logs, symptom tracking, and health journal entries. The Medical ID fields and the free-text notes in this data are encrypted before storage - section 3 lists exactly what is encrypted and what is not.
• Community content: forum posts, comments, reactions, and direct messages within the platform.
• Usage data: anonymized analytics about how you use the platform to help us improve.
• Location data: only if you opt in to the global community map feature. Approximate, not precise.

3. Medical ID & PHI Encryption

Your Medical ID and health logs are considered Protected Health Information (PHI). We encrypt these fields with Fernet (AES-128-CBC with an HMAC-SHA256 authentication tag) before they are stored: your full name, emergency contact name and phone number, your hematologist or treatment centre and their phone number, diagnoses, medications, allergies, insurance details, critical alerts, free-text notes, and the condition-specific fields you fill in. The free-text notes you write in a bleed or treatment log are encrypted the same way. Each value is encrypted before it is written, so those columns hold ciphertext, not readable text.

Keys are held separately from the data: the encryption key is passed to the application at startup from a managed key service (AWS KMS or HashiCorp Vault, or the deployment environment in development) and is never stored next to the records it protects. Decryption happens only to show you your own data - on your Medical ID screen, in an export, or through a share link you created - and each of those reads is recorded in an access log. Share links expire after 24 hours.

Some fields are not covered by field-level encryption, because the database has to read them: your date of birth, your blood type, your preferred treatment centre, and the structured parts of a log entry (which joint, how many units, when it happened). Those columns are protected by database access controls rather than by per-field encryption. We would rather say that plainly than describe the whole database as encrypted when parts of it are not.

4. How We Share Data

We do not sell your personal information. We share data only:

• With your consent: when you choose to share your profile or health information with other community members.
• With service providers: trusted third parties who help us operate the platform (hosting, email delivery, analytics). They are bound by data processing agreements.
• For legal compliance: if required by law, subpoena, or to protect the safety of our users.
• In aggregate: anonymized, de-identified data for research purposes (e.g., “X% of hemophilia patients report joint pain as their primary symptom”).

5. Data Retention & Deletion

You can delete your account at any time. Upon deletion, we soft-delete your data for 30 days (allowing account recovery), then permanently purge it. Forum posts are anonymized rather than deleted to preserve community conversation continuity.

You can request a full export of your data at any time through your account settings. We provide exports in machine-readable format within 30 days of request.

6. Security

In plain terms: health data is encrypted before it is stored and encrypted in transit (HTTPS/TLS); every read of health data is written to an audit log; sign-in sessions are short-lived and tokens are rotated; and the app sets strict browser security headers. We do not publish our full security architecture, because publishing it only helps people who want to break it.

If you want to know more about how we protect health data before you trust us with yours, email pk@deeplyhealth.org and we will answer directly. To report a security concern, use the same address and mark it urgent.

7. Your Rights

Depending on your jurisdiction, you may have rights under GDPR, CCPA, HIPAA, or other privacy regulations. You have the right to:

• Access your personal data
• Correct inaccurate data
• Delete your account and associated data
• Export your data in a portable format
• Withdraw consent for data processing
• Lodge a complaint with your local data protection authority

8. Contact Us

For privacy-related questions or to exercise your data rights, contact us at pk@deeplyhealth.org.