WILL MY TAKING PART IN THIS STUDY BE KEPT CONFIDENTIAL?
Your confidentiality will be respected. No information or records that disclose your identity will be published without your consent. Federal and provincial privacy laws give safeguards for privacy, security, and authorized access to information. We will not give information that identifies you to anyone without your permission, except as required by law.
You will be assigned a unique study number as a participant in this study. Only this number will be used on any research-related information collected about you during this study, so that your identity [i.e., your name or any other information that could identify you] as a participant in this study will be kept confidential. Information that contains your identity will remain only with the Principal Investigator and/or designate. The list that matches your name to the unique study number that is used on your research-related information will be stored securely on the secure BC Children's Hospital password protected network server.
Audiotapes and transcriptions will be encrypted and securely stored on the secure BC Children's Hospital password protected network server. Audiotapes will be destroyed after the data has been analyzed. Only the Principal Investigator Dr. Sylvia Cheng and her delegated study staff members will have the ability to access the folder containing audiotapes and transcriptions.
Your e-consent data will be stored on a secure database called REDCap on BC Children's Hospital's secured network in Vancouver, BC. Only authorized researchers and research personnel have access to the REDCap database.
All computer files will be kept locked with restricted access passwords known only to the investigators. Results of this study will be published in scientific journals or presentations. All results will be published in aggregate so no participant could be identified.
Your de-identified research data (which means your name and other identifiers have been removed) may be deposited into a publicly accessible location at the time of publication. This can enhance the transparency of the research data and allows for external validation and fraud control, but it also allows others to access the data for re-analysis of this study or to do other kinds of analyses in the future beyond those you are consenting to in this study. Also, this future use of your data may not be subject to oversight by a research ethics board, and thus the data may be publicly shared and used in currently unknown ways. Once the data are made publicly available, you will not be able to withdraw your data. Even though the identifying information will be removed from the data it is possible that others may be able to find out who you are. The chance of this is currently thought to be quite low.
It is important for you to know that if you disclose information during this study that indicates that a child has been harmed or there is an immediate or foreseeable safety risk to a child (e.g. someone has or may possibly harm your child), the researchers have an obligation to report this to legal authorities. If this happens, Dr. Sylvia Cheng will contact you.
We are asking study participants to provide a personal email address and their preferred method of contact (phone or email) so that we can communicate with you about the study and your participation, as well as for future research opportunities. Before you provide your consent, please carefully consider whether your email account is secure, whether other people have access to it or whether you have concerns about the security of any information sent to this account. We will only send your personal information to the email address you have provided to us, and all the information which you provide to us will be kept confidential by the research team. However, you should know that some webmail services (e.g. Gmail, Hotmail, etc.), may store the contents of your email account outside of Canada (for example, in the United States), where privacy and data security standards may be different than they are in Canada. Because future emails may contain some personal information about you, including your name, the Freedom of Information and Protection of Privacy Act (British Columbia) requires that we obtain your consent. Providing your email address means that you voluntarily agree and give your consent for the study team to email you about the study and your participation. If you provide a phone number as your preferred method of contact, we will contact you at your specified preferred time; however, we will not leave voicemails.