CONFIDENTIALITY, DATA COLLECTION, AND DATA STORAGE

Your name will not appear anywhere in the database or a publication. Anonymized information (i.e. research data stripped of direct identifiers) will be encrypted and stored on a secure server for analysis and may be transferred securely to other members of the research team. Once all the data are collected and analyzed for this project, we plan on sharing this information with the research community with reports, presentations, and journal articles. Individual data will not be reported in the results.

If you consent to participate, you will complete the survey using SurveyGizmo which offers secure data collection and data storage capabilities (see: https://www.surveygizmo.com/security/). This company maintains data centers located in Canada. SurveyGizmo maintains high security standards and offers features for compliance with Canadian and Provincial legislation - PIPEDA (Personal Information Protection and Electronic Documents Act) and PHIPA (Personal Health Information Protection Act). SurveyGizmo also offers features for compliance with the General Data Protection Regulation (GDPR) and the Health Insurance Portability and Accountability Act (HIPAA).  Surveys distributed from and information collected by SurveyGizmo in Canada are 100% stored in the Canadian data center located near Montreal, QC, and are not subject to the US Patriot Act. More on SurveyGizmo's privacy policy can be found at: https://ca.surveygizmo.com/privacy.  Further information on the GDPR can be found at: https://gdpr.eu. Further information on HIPAA can be found at: https://www.hhs.gov/hipaa/.

When information is transmitted over the internet, privacy cannot be guaranteed. There is a slight risk your responses may be intercepted by a third party; however, the survey uses secure SSL (https) links, and response data with SurveyGizmo are encrypted in transit and at rest. University of Waterloo and University of Calgary researchers will not collect or use internet protocol (IP) addresses or other information which could link your participation to your computer or electronic device without first informing you. SurveyGizmo may use cookies and/or IP addresses to prevent duplicate responses.

PARTICIPATION AND WITHDRAWAL

Your participation is voluntary, and your responses are anonymous. You may skip any question you do not feel comfortable answering. If you wish to stop the survey and withdraw your participation, you may do so at any time by closing the survey window. The survey will ask for your consent to participate before commencing. Your responses will not be traceable back to you, and we will not be able to remove your responses from the study if you choose to withdraw. If you include your email address and later wish to remove your data from the study, you will be able to contact the research team and your data will be removed from the study. All information obtained during this study will be kept strictly confidential.

DATA RETENTION

The researchers intend to keep the research data and records for a minimum of seven years for future research. Anonymized data collected for this study may be shared with other members of our research team for future studies that are unknown at this time. Any data shared with other researchers will not include your name or other personal identifying information.

Any future use of this research data is required to undergo review by a Research Ethics Board.

QUESTIONS ABOUT THE STUDY

If you have any questions, concerns or would like to speak to the study team for any reason, please contact: Francesca Cardwell (fcardwel@uwaterloo.ca) or Susan Elliott (elliotts@uwaterloo.ca). 

This study has been reviewed and received ethics clearance through a University of Waterloo Research Ethics Committee (ORE #42115) and the Conjoint Health Research Ethics Board at the University of Calgary (REB20-0522). If you have any questions about your rights as a research participant or have concerns about this study, please contact: the Committee contact the Office of Research Ethics, at +1-519-888-4567 ext. 36005 or ore-ceo@uwaterloo.ca, or the Chair of the Conjoint Health Research Ethics Board, University of Calgary at +1-403-220-7990.

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