All information you provide is confidential. It will be kept in a locked cabinet in a locked research office or on an encrypted computer that’s password protected, and only accessible to study investigators and staff. We will do everything we can to keep this data private. No study-related data that includes your name will ever be released outside of the study doctor’s office. We will make every legal effort to make sure that your health information is kept private.
Throughout the study, we will be collecting your health data during our phone interviews with you. We will also use your Personal Health Number (PHN) to link this study data to relevant records from your hospital, emergency room, physician office visits, and pharmacy data. The personal health information that we get from these records will be limited to what is needed for the study. If you leave the study, we will not collect new health information about you, but we will need to keep the data that we have already collected.
After you have completed the study, all of the identifying information (i.e., name and contact information) will be removed and your record will be labeled with a study ID that doesn’t resemble your name. Your information will be stored in an encrypted, password protected electronic file. We will keep a separate list (in a locked cabinet) that links your name to the study ID number if it’s ever necessary to relink you to your data. We will store this data for a minimum of 5 years after the end of the study. The results of this study will be used for publication, but will not identify any participants in any way. To maximize the value of this study after our analysis is complete, we will make our raw data available over the Internet (with all identifying information removed) so that other research groups can verify our findings and explore questions of their own.
For any concerns about your treatment or rights as a research subject in Alberta, contact the Research Ethics Office, University of Alberta at 780-492-2615 or e-mail them at firstname.lastname@example.org). These offices have no direct involvement with this project.