Introduction

Purpose

Thank you for participating in this online survey for patients and caregivers. The purpose of this survey is to gather patients’ experiences and knowledge related to biomarker testing in Canada. Insufficient patient knowledge surrounding diagnostic technologies including biomarker testing hinders cancer patients’ access to new treatments and better clinical outcomes. This survey will help assess needs and gaps in Canadian personalized medicine by gathering patients’ experiences with biomarker testing in cancer treatment centres across Canada. The ultimate goal is to improve the access that cancer patients have to biomarker testing, as well as the quality of this testing, in order to improve outcomes for cancer patients. Similar national surveys have been conducted in other countries, and this survey will allow the first Canadian specific data.
This unbiased patient-led research project is designed by the patient advocacy group Colorectal Cancer Canada with guidance from an expert Scientific Advisory Committee and funded generously by the Get Personal sponsors: Amgen, Bayer, Pfizer, Eli Lilly, Taiho and BMS, Janssen-Johnson & Johnson, and the Don McQuaig Foundation. Sponsors did not provide any input on the survey questions.

Colorectal Cancer Canada’s Get Personal Program aims to educate patients and inform health policy about biomarker testing for use with companion diagnostics to increase access to personalized healthcare and precision medicines based on a patient's specific genomic profile.

The goal of the survey is to:

•       Identify patients’ knowledge and awareness of biomarker testing
•       Describe patients’ experiences with biomarker testing
•       Describe difficulties and restrictions patients face throughout the process biomarker testing

There are three sections in this survey:

Section 1: Personal Demographics and Cancer Diagnosis
Section 2 – Knowledge on Biomarker Testing
Section 3 – Experience with Biomarker Testing
Section 4 – Additional Information (Optional)

Instructions

Participation in this study is entirely voluntary. You can choose not to participate or discontinue participation at any time.

The survey includes three main sections: personal demographics and cancer diagnosis; your knowledge of biomarker testing; and your experience with biomarker testing.

This survey can be completed by the patient and/or by the caregiver on behalf of the patient.

This survey should take approximately 20 minutes to complete. Once you complete the questions and submit the survey, your response will be sent directly to the Colorectal Cancer Canada Get Personal Program Manager.

All of your responses to this survey will remain anonymous and cannot be linked to you in any way. Once you submit your completed survey, there will be no way to withdraw your responses from the study because there is no mechanism to identify you.

Study data are returned to the Program Manager in a digital format that does not identify individual responses. The digital, non-identifiable data will be kept by the Program Manager on a password-protected computer. Combined or analyzed, non-identifiable data will be shared with the medical community and the public to increase awareness about this important public health issue.

There are no risks associated with this study. While you will not experience any direct benefit from participation, information collected in this study may benefit others in the future by contributing to our knowledge and understanding of the performance of biomarker testing across provinces and territories in Canada.

If you have any questions regarding the survey or Colorectal Cancer Canada’s Get Personal Program, please contact the Get Personal Program Manager, Maria El Bizri, at mariae@colorectalcancercanada.com

To show our appreciation for the time spent on this survey, every respondent, should they wish, will receive a Give a Shit gift box (learn more: giveashitnow.ca). To opt in, please leave your mailing address in the appropriate field.

If you agree to participate, you are asked to fill out the survey provided below. By completing and submitting this survey, you are indicating your consent to participate in this study. There is no need for a signed consent to participate.

Question Title

* 1. “I agree that this information is being provided voluntarily and by providing this information I consent to its use by CCC for statistical purposes.”

T