Project ALL STAR Wearable Data Privacy Policy

This Privacy Policy applies specifically to Project ALL STAR and the collection and use of wearable and health data obtained through participant-authorized connections to Google Health and related services. This Privacy Policy supplements, and should be read together with, Special Olympics, Inc.'s ("SOI") Privacy and Data Security Policy. To the extent the SOI Privacy and Data Security Policy addresses the collection, use, disclosure, retention, safeguarding, and management of personal information, it applies to Project ALL STAR except where this Privacy Policy provides more specific information regarding wearable data collected for the Project. This Privacy Policy describes how SOI collects, uses, stores, and protects Fitbit and wearable-device information shared by Project ALL STAR participants including data accessed through Google Health Connect or other authorized wearable-data integrations. This Privacy Policy supplements, and should be read consistently with, the SOI Privacy and Data Security Policy. For purposes of this Privacy Policy, “Personal Information” means individually identifiable information about a Project ALL STAR participant.

SOI may collect steps, heart rate data, sleep data, profile information including participant name and user ID, and device information. Data elements collected are limited to those specifically authorized by the participant through the Google authorization process. SOI does not intentionally collect precise geolocation data unless expressly disclosed and authorized. SOI treats this information as Health and Research Data under the SOI Privacy and Data Security Policy. SOI seeks to collect Personal Information that is adequate, relevant, and not excessive for the purposes described in this Privacy Policy, and to keep that information accurate and current as appropriate for those purposes.

Participants who elect to share wearable data are presented with a Google Health authorization screen. If authorization is granted, SOI receives credentials necessary to access approved Fitbit data and stores information in SOI-controlled systems. Participants may revoke authorization through Google or applicable device settings, subject to Project ALL STAR study procedures. Where applicable, a participant’s authorized guardian or representative may exercise the participant’s rights. If SOI intends to use Personal Information for a purpose other than the purpose for which it was collected, SOI will provide notice before that further use and any additional information required by applicable law.

Research, evaluation, athlete health analysis, program improvement, reporting, scientific publications, and activities approved under applicable IRB approvals. Data will not be used for marketing or sold to third parties. SOI may also process Personal Information for computer operations, quality assurance, testing, and other operational activities necessary to support these purposes. SOI will not further process Personal Information in a manner incompatible with the specified purposes.

Wearable data and authentication information are stored in Microsoft Azure environments controlled by SOI. Access is restricted to authorized personnel. SOI uses reasonable administrative, technical, and physical safeguards designed to protect participant information. SOI stores Personal Information only in approved systems and uses safeguards appropriate to the nature and risk of the information, including measures designed to protect against accidental or unlawful loss, alteration, destruction, unauthorized disclosure, or access.

SOI does not sell participant data. Information may be shared with approved researchers, applicable Special Olympics organizations, service providers, regulators, or others when legally required or permitted. Any sharing will be limited to the purposes described in this Policy and applicable research approvals. Research results may be published only in aggregate form without identifying individual participants, unless a participant has otherwise provided written consent. SOI may also disclose Personal Information to the participant or the participant’s authorized guardian or representative; to protect a participant’s or another person’s vital interests or public safety; to respond to government requests; or as required by law.

Personal Information will be retained in identifiable form only for as long as necessary for the purposes described in this Privacy Policy. Health and Research Data will be retained while SOI has an ongoing relationship with the participant, subject to applicable research, legal, regulatory, and records-retention requirements. Upon withdrawal, future collection will cease, although information previously collected may continue to be retained and used as permitted by law and research requirements. Withdrawal of consent is effective for future processing and does not affect the lawfulness of processing based on consent before withdrawal.

A participant, or the participant’s authorized guardian or representative, may ask to access, correct, or erase the participant’s Personal Information; restrict or object to its processing; or withdraw consent, in each case as provided by applicable law. Where applicable, a participant may also request data portability and lodge a complaint with the competent supervisory authority.

SOI will comply with applicable legal requirements when Personal Information is transferred internationally, including when information is transferred to SOI in the United States or to a service provider or research partner in another country.

Questions about this Privacy Policy or requests concerning Personal Information may be directed to the Project ALL STAR Evaluation Coordinator or the SOI Legal Department at legal@specialolympics.org.