Patients’ access to information
Participants will be able to request and access all of the data that they submit to the study, and can alter the amount of information that they submit to the study based on how comfortable they feel. The data is securely transmitted to researchers, without a name or directly identifying information. As with all Apple apps that communicate to a third party, participants will need to set their permissions manually before any information is communicated to third party research groups.
Privacy is an important part of the integrity of the study, and of the elevateMS app. Any identifying information that participants submit as part of the registration process is stored separately from the study data. A randomized code number identifies any given participant’s study data, and the code makes it impossible for anyone to trace the data back to that person. Only the organizers of the study and some IT staff members have access to the key that traces back to the individual, but they do not have open access to participant information directly.
Once the participant is assigned a code number, the identifying information is encrypted and uploaded into a secure cloud-based platform, where it cannot be easily accessed by anyone. No members of the research team can distribute participant information, nor does the study have access to the contacts, text messages, phone data, or web history of any participant.