Giving Consent is a Precondition to Collecting User Data
The Bridge API is set up such that no data can be uploaded by an app until the app makes a call to indicate the electronic-consent process has been completed by the user. Once this occurs, data will be continuously uploaded by the app on the users behalf as a background process on the client.
Participants may Access their own Data
Sage believes that a user should always have the right to obtain the data that he or she provided to the study. The Bridge API therefore allows any individual user to retrieve his or her own data from the server at least in principle. In practice, for most participants access to their own data will depend on the support for data retrieval provided by their study's app. The current APIs are geared around providing support to a client.
At a future time we would like to provide participants an easy way to bulk-download all of their study data, see BRIDGE-53.
Researcher access to Participant Data
Periodically, bulk exports of deidentified study data are produced by Bridge server for each study, and posted on Sage's data sharing platform, Synapse. Each study PI will have some control over the timing of data releases to Synapse, but we anticipate that new versions of datasets become available on the order of a few days to weeks, not in real time.
Revoking / Resuming Data Sharing
The server provides API calls allowing the user the ability to suspend or resume sharing data with investigators. Suspending data sharing does not disable the account, but it does block user data from being included in any future data set exported from the study. Participants may continue to use the app, and resume data sharing at a later date.
An administrative-only API call can be made by Bridge technical admins to permanently delete a users account and all associated data from Bridge server if requested by a user.
Note, even after a Bridge account has been deleted, it is not possible to pull back data already distributed to researchers. This fact is explained to users during the informed consent process which much be completed to enroll.