Data Privacy Policy — PBC Itch Tracker

DRAFT — pending final legal review by Community Liver Alliance counsel. This page reflects the app’s current practices for admin access and third-party data sharing and is published for transparency. The exact legal wording may be adjusted before it is finalized.

Admin access & third-party data sharing

We follow a two-tier identity model so we can operate the app and share what CLA learns without exposing you:

Admin support view (identified, audited). A small number of authorized CLA administrators can view a single user’s real name, email, and check-ins only when needed to answer a support request or investigate a safety issue. Every time an admin reveals your identity in the app, the system writes a permanent audit entry with the admin’s ID, timestamp, and stated reason.
Everything else is de-identified. All admin dashboards, cohort analytics, CSV/PDF reports, and datasets shared outside CLA are automatically stripped of direct identifiers (name, email, phone, exact dates of birth), replace your user ID with a stable pseudonymous code, coarsen dates to the ISO week, and exclude free-text notes. Aggregates with fewer than 10 people are suppressed (“insufficient sample”) so individuals cannot be re-identified from small groups.

Who receives your data, and in what form:

Recipient	Form	Requires your opt-in?
CLA internal / board	De-identified aggregate + row-level	No — needed to run the program
Academic researchers	De-identified row-level	Yes — Research participation opt-in
Pharmaceutical / industry sponsors	De-identified aggregate	Yes — Research participation opt-in
Your treating clinician	Identified single-patient report	Yes — per-request in Settings

What we never do: we do not sell your personal information; we do not share your name or email with researchers, pharma sponsors, or advertisers; we do not include your free-text notes in any external share; we do not disable the audit log.

You can withdraw research participation, request a copy of your data, or request deletion at any time from Settings → Privacy & consent.

Plain-language summary. The PBC Itch Tracker & Discussion Guide (the “App”) is provided by the Community Liver Alliance (“CLA”). We collect only the information needed to run the App and to advance CLA’s nonprofit mission. We do not sell your personal information. We share personal information only with the service providers that operate the App and, if you opt in, in aggregated and de-identified form for research and program reporting.

Not a HIPAA-covered service. CLA is a nonprofit, not a healthcare provider, health plan, or clearinghouse, and is not a HIPAA “covered entity” or “business associate.” Your data is protected under the FTC Health Breach Notification Rule and state consumer-health-data laws (including the Washington My Health My Data Act). See our Consumer Health Data Policy for the details required by those laws.

Not intended for EU / UK residents. The App is designed for United States residents. Please do not create an account if you are outside the US.

1. Scope

This policy applies to the App and to the data you create when you use it. It does not apply to third-party websites or services that the App links to, or to information you share directly with your clinician. This policy should be read together with the Terms of Service and the Consumer Health Data Policy.

2. Who is the data controller

The Community Liver Alliance is the controller of the personal information you provide when using the App. Contact: communityliveralliance.org.

3. What we collect

We collect only the following categories of data:

a. Account & profile

Email address and password (or Google identifier if you use Google sign-in).
Display name (or the local part of your email if you do not provide one).
Preferred language, timezone, reminder preferences (frequency, time), optional diagnosis year, optional baseline itch score, and treatments you choose to list.
An optional research-consent flag indicating whether you allow your data to be included in aggregated, de-identified research and program reporting.

b. Check-ins

Date, itch severity (0–10), sleep impact, mood impact, body regions, time of day, triggers, reliefs, life-impact selections, whether skin was damaged, and any free-text notes you enter.

c. Treatments you add

Name, category, start and end dates, dose notes.

d. Survey responses

Any answers or ratings you choose to submit to in-app surveys.

e. Educational content usage

We may log which articles are opened, in aggregate, to prioritize what to publish next.

f. Technical & security data

Authentication session tokens, sign-in timestamps, browser type and language, IP address (used transiently for security and abuse prevention), and error/diagnostic logs.

What we do not collect: we do not knowingly collect Social Security numbers, financial account numbers, precise geolocation, biometric identifiers, or information from children under 18. Please do not enter that kind of information into the App.

4. How we use your data

To operate, secure, and improve the App.
To generate your dashboard, trends, PBC Itch Impact Score™, and visit report so you can share it with your care team.
To send optional reminders you configure (in-browser notifications).
To respond to your support requests.
If you opt in, to include your data — in aggregated, de-identified form — in research and program reporting that furthers CLA’s mission (patient advocacy, sponsor impact reports, published statistics). Aggregate reports do not identify you.
To comply with legal obligations and enforce our Terms of Service.

5. Who we share your data with

We do not sell your personal information. We do not share your identifiable check-ins, notes, treatments, or survey responses with sponsors, advertisers, or researchers. Categories of sharing are strictly limited to:

Service providers (subprocessors) that operate the App under contract:
- Lovable — application hosting and infrastructure (Lovable Cloud).
- Supabase — managed authentication, database, and storage used by Lovable Cloud.
- Cloudflare — content delivery and edge serving used by Lovable’s infrastructure.
- Google — only if you choose to use Google sign-in, in which case Google receives standard OAuth information needed to authenticate you.
You. You can export your own visit report to share with clinicians, family, or caregivers.
Aggregated, de-identified statistics, only for users who have opted in to research use.
Legal disclosures when required by law, valid legal process, or to protect the rights, safety, or property of CLA, users, or the public.
Successors. If CLA merges with, is acquired by, or transfers assets to another nonprofit organization, personal information may be transferred subject to this policy.

6. Who inside CLA can see your data

Administrators authorized by CLA can access data in the App to provide support, moderate content, and generate aggregate reports. Administrative actions are recorded in an internal audit log. Access is limited to individuals with a legitimate business need.

7. Cookies & local storage

The App uses browser local storage to keep you signed in (authentication session) and to remember your language choice. It does not use third-party advertising cookies or cross-site tracking trackers. If we add analytics in the future, it will be described here and you will be able to opt out.

8. How long we keep your data

Account & profile: for as long as your account is active.
Check-ins, treatments, survey responses: until you delete them or delete your account.
Backups: retained by our infrastructure providers for a short rolling window for disaster-recovery purposes.
Aggregated, de-identified statistics: may be retained indefinitely because they no longer identify you.
Audit and security logs: retained for a limited period as needed to protect the App.

9. Your rights and choices

Regardless of where you live, you can:

View and edit your profile, check-ins, treatments, and reminder preferences from within the App.
Turn research consent on or off at any time from Settings.
Export your visit report (which contains your own data) as a PDF.
Delete your account, which removes your profile, check-ins, treatments, and survey responses from active systems. Backups and aggregate, de-identified statistics may persist as described above.
Contact CLA to request access to, correction of, or deletion of your personal information.

Depending on where you live (for example, California, Virginia, Colorado, Connecticut, Utah, the EU/EEA, or the UK), you may have additional rights, including the right to know, access, correct, delete, restrict, object to certain processing, obtain a portable copy, or lodge a complaint with a supervisory authority. To exercise these rights, contact CLA. We will not discriminate against you for exercising any right you have under applicable law.

10. Children

The App is not directed to children under 18 and we do not knowingly collect personal information from them. If we learn that a child has created an account, we will delete it.

11. Data security

We use industry-standard technical and organizational safeguards (encryption in transit, encryption at rest by our infrastructure providers, role-based access, row-level database security, audit logging, principle of least privilege). Even so, no method of electronic storage or transmission is 100% secure. Use of the App is at your own risk, and to the maximum extent permitted by law CLA disclaims liability for unauthorized access, disclosure, or loss despite the safeguards described above.

12. International data transfers

The App is operated from the United States. If you access it from outside the U.S., your information will be transferred to and processed in the U.S., where laws may differ from those in your country. By using the App you consent to that transfer.

13. Do Not Track

The App does not respond to Do Not Track signals, because there is no common standard for how to honor them. See the Cookies section for what we do and do not use.

14. Changes to this policy

We may update this policy. Material changes will be reflected by updating the “Effective” date at the top and, where appropriate, by additional in-app notice. Continued use of the App after changes take effect indicates acceptance.

15. Contact

Privacy questions or requests can be sent to CLA via the contact information published at communityliveralliance.org.

This page is maintained by the Community Liver Alliance to describe how the PBC Itch Tracker & Discussion Guide handles data. It is provided for transparency and is not a certification or legal advice.