Consumer Health Data Privacy Policy

This policy explains how Parkinson's Pathways handles consumer health data as defined by the Washington My Health My Data Act, Nevada SB 370, and similar laws. It applies to everyone who uses the site, wherever they live. We only collect health details you type in yourself, we only use them to find clinical trials for you, we never sell them, and we never share them with anyone unless you sign a separate, specific authorization.

What Health Data We Collect

Only the Parkinson's-related details you choose to enter: how long ago the diagnosis happened and a coarse stage derived from it, an optional age band (never an exact age), optional medication answers (levodopa status and a coarse dose band), optional match-sharpening answers (functional stage, main symptom pattern, prior treatments such as DBS, coarse memory or mood flags, and trial preferences), general location (state, province, country, or a postcode used only to measure distance to trial sites), logistics answers from trial-experience surveys, and the plain-language summary you approve when requesting an introduction to a trial site. We never collect biometric data, genetic data, precise geolocation, or health records, and we never infer health conditions from browsing.

Where It Comes From

One source only: the answers you type into this site yourself. We never buy health data, never receive it from third parties, and never derive it from trackers.

Why We Collect It

To rank and show you clinical trials that fit your situation, to email you when a new trial matches (if you keep alerts on), to show anonymous aggregate survey statistics (only after at least 3 people have answered), and to send an introduction to a trial site only with your separate signed authorization. Never for advertising, never sold, never used for a purpose you have not agreed to.

Who Can See It

Two service providers process data on our instructions only: our database and hosting provider, and Kit, our email delivery service. The only time health data leaves them is an introduction you explicitly request, covered by a separate signed authorization that names the exact trial and site team, lists every item shared, states that the site may pay us a fee, and expires after one year. You can revoke it any time before the introduction is sent. No sale of data, no advertisers, no data brokers, no third-party trackers.

Your Rights

Access: download a machine-readable copy of everything we store about you, self-service on the Privacy page while signed in. Withdraw consent: stop all use of your health answers for matching and alerts with one click on the Privacy page; withdrawal also blanks the health-related fields on your email-service record, and you can re-consent by running the matcher again. Delete: permanently delete your account and every record tied to it, self-service on the Privacy page. Revoke an authorization: withdraw a pending trial-site introduction from your Saved Trials page any time before it is sent. Exercising any right is free and never affects your access to the site.

Appeals

If we decline a request you make about your health data, email privacy@parkinsonspathways.com with the subject line "Appeal" and we will respond within 10 business days with a written explanation. If you are not satisfied, you may contact your state attorney general; Washington residents can reach the Washington State Office of the Attorney General at www.atg.wa.gov.

Contact

Questions about this policy or your health data: privacy@parkinsonspathways.com.