Feedback Survey in Follow-Up to May 2, 2019 Webinar Hosted by UBC Learning Circle titled "The Silent Genomes Project: First Nations Perspectives on Precision Diagnosis of Rare Diseases in British Columbia"

Principal Investigator:

Dr. Dean Regier, PhD
Scientist, Cancer Control Research
BC Cancer Research Centre
Contact number: (604) 675-8000, ext. 7079

Study Contact:

Chenoa Cassidy-Matthews, MPH
PhD Student, Cancer Control Research
BC Cancer Research Centre
Contact number: (236) 996-6137
Contact email: cmatthews@bccrc.ca

Please read all sections of this form carefully. The researchers will assume that people who complete the research survey have read, understood, and provided consent to participate in the project described below.

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Dear prospective participant:

Globally, Indigenous Peoples experience unequal access to genomics-guided health care -- a health inequity the World Health Organization calls the "genomic divide." The Silent Genomes Project aims to address this divide by reducing access barriers to diagnosis of genetic disease in Indigenous children. Understanding First Nations' needs, preferences, and values is a necessary antecedent to this goal. Our research team hosted a webinar with UBC Learning Circle on May 2nd, 2019 to talk about our developing research designed to understand First Nations' perspectives surrounding precision diagnosis of rare diseases in British Columbia.

What is this survey about?

With this follow-up survey, we want to do 3 things:

Measure webinar engagement and evaluate the effectiveness of our communication of our developing research,
Ask for feedback on our research design, approach, and community engagement, and
Invite you to participate in ongoing knowledge dissemination activities as part of the Silent Genomes Knowledge Network ("Knowledge Network").

You will be asked a series of anonymous questions regarding the content of the webinar and the design of our proposed research, to help us improve our research communications in the future. You will also have the opportunity to participate in the Knowledge Network by sharing your email address with us to contact you with future communications regarding progress updates, data collection, preliminary findings, and other opportunities for engagement with Activity 4.

What does consent mean?

Your consent means that you understand what participation in this survey will involve and agree to participate of your own free will. However, any participant may withdraw from the research study event at any time without consequences. For participants who elected to provide their email address, survey responses from those who choose to withdraw will be deleted through a mechanism that matches email addresses to participant ID. This will be managed by the survey company REDCap.

Why is my participation important?

The researchers in this study are looking to generate feedback on the design, implementation, and communication of the proposed research outlined in the UBC Learning Circle webinar hosted on May 2, 2019.

Your participation in this survey will help researchers and decision-makers (your community leaders, as well as provincial and federal governments) understand what is important to community members, parents, and caregivers when conducting our research in First Nations communities.

What will my participation involve?

Your participation in this study will involve filling out this online survey that asks a few questions about the design and implementation of the proposed research in Activity 4 of the Silent Genomes project, as well as the communication of the content and knowledge translation strategy. Your participation in this survey includes the opportunity to provide an email address to join the Knowledge Network: an invitation to help shape this project on an ongoing basis.

Your participation is completely voluntary. If you decide to participate, you can withdraw at any time without any consequence. The survey will take approximately 10 minutes to complete. We will not share your responses with anybody else.

The survey company administering this survey is REDCap (Research Electronic Data Capture). REDCap is a secure, web-based application designed to support data collection for research studies.

Once you have completed the survey, our project team will analyze the data and make appropriate changes to the research design and implementation. These changes will be communicated to the Knowledge Network. By completing the survey, we assume that you have given us consent to use this information. If you have any questions about what we are asking of you, please contact the principal investigator (Dean Regier) at dregier@bccrc.ca or the study coordinator (Chenoa Cassidy-Matthews) at cmatthews@bccrc.ca.

Compensation

No compensation will be provided for completion of the follow-up survey and participation in the Knowledge Network.

Who will get to see the information and what will they get to see?

The survey is being administered through the REDCap platform. Only certified REDCap research administrators and the project coordinator will have access to responses. Survey responses will be collected anonymously. If you choose to provide your email address, your responses will be de-identified before analysis by the research team.

Any information resulting from this survey will be kept strictly confidential, and no personal or identifying information will be released to anyone outside of the study staff. All documents will be identified by code number only and kept in a secure location. You will not be identified by name in any reports completed for the study.

Who can I contact for more information?

The project contact is:

Dr. Dean Regier
Principal Investigator
Scientist, Cancer Control Research
BC Cancer Research Centre
(604) 675-8000, ext 7079

Please feel free to call if you desire any additional information about your participation in the project.

If you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this study, contact the Research Participant Complaint Line in the UBC Office of Research Ethics at 604-822-8598 or if long distance e-mail RSIL@ors.ubc.ca or call toll free 1-877-822-8598. Please reference the study number H18-02787 when contacting the Complaint Line so the staff can better assist you.

Participant Consent (Please Read Carefully)

• I have read and understood the subject information and consent form.
• I have had sufficient time to consider the information provided and to ask for advice if necessary.
• I have had the opportunity to ask questions and have had satisfactory responses to my questions.
• I understand that all of the information collected will be kept confidential and that the results will only be used for scientific objectives.
• I understand that my participation in this study is voluntary and that I am completely free to refuse to participate or to withdraw from this study at any time.
• I understand that I may ask questions about this study in the future.
• I understand that I am not waiving any of my legal rights as a result of consenting.

Participants completing the survey will be presumed to have consented to the above. If you do not consent to participate, please do not complete the survey.

You have selected an option that triggers this survey to end right now.

To save your responses and end the survey, click the 'End Survey' button below. If you have selected the wrong option by accident and/or wish to return to the survey, click the 'Return and Edit Response' button.