The Ottawa Regional Cancer Foundation is the voice for cancer survivorship in Eastern Ontario. The Foundation is a leader in the community, providing local residents with increased access to person -centered care through Cancer Coaching. The Cancer Foundation is launching its ‘‘What Matters To You Project’ to learn more about the needs of cancer survivors and their families.
You are being invited to participate in the “What Matters to You” project conducted by the Ottawa Regional Cancer Foundation in collaboration with the Cancer Support Community (CSC) and Patient Planning Services (PPS) Thank you for taking the time to consider this opportunity.
The Cancer Support Community (www.cancersupportcommunity.org) is a worldwide nonprofit network of cancer support, dedicated to ensuring all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community. The Ottawa Regional Cancer Foundation has retained the services of the CSC’s Research and Training Institute and Patient Planning Services to set up our own unique Ottawa Regional Cancer Foundation What Matters to You Registry, to help us better understand what really matters to families, impacted by cancer throughout our community in Eastern Ontario. CSC will conduct the analysis of the data and prepare the project report; PPS will provide the technology to support the registry
The following sections describe the purposes, procedures, risks, benefits, and precautions associated with the project. In order to decide if you want to participate, you should understand enough about its benefits and potential risks to be able to make an informed decision. This is known as the informed consent process.
WHAT IS THE PROJECT ABOUT?
You are being asked to help us update our understanding of the social, emotional, and financial challenges of cancer survivors and those caring for them throughout Eastern Ontario. The information from this project will be used to raise awareness of these challenges, help develop local programs and services to address these needs, and ultimately improve the long term quality of life of people impacted by cancer.
WHO IS ELIGIBLE TO PARTICIPATE?
You must be at least 18 years of age with any cancer diagnosis at any point in time, or have been a caregiver for someone diagnosed with cancer. You will not be eligible to participate in the project if you do not meet these requirements.
DO I HAVE TO PARTICIPATE?
No, you do not have to participate in this project. Participation for this project is entirely voluntary. If you choose not to participate this decision will not affect the services you receive from the Ottawa Regional Cancer Foundation.
WHAT HAPPENS IF I SAY ‘yes’?
If you do choose to participate you will be registered in the Ottawa Regional Cancer Foundation’s ’What Matters to You Project’. Once registered you will be taken to a part of the website to access the survey, answer questions and share your experiences. (There is no cost or payment to take part in the Registry.) You will be asked to complete one on-line survey lasting about 30-45 minutes. The survey includes questions related to demographics, cancer background information, cancer treatment information, side effects and symptom management, distress, treatment decision making, treatment planning, clinical trials, survivorship care planning, work related issues and sharing your experience. While the Ottawa Regional Cancer Foundation offers its services in both French and English, and multilingual translation is available upon request, this survey is available in English only. If you agree to the consent to participate in this project, you will then be taken to a website provided by PPS to complete the survey.
IS THERE ANY RISK TO PARTICIPATING IN THIS PROJECT?
Except for the time required to complete the survey, there are no known or foreseeable risks associated with participating in this project. Due to the nature/topic of certain questions it is possible you may find answering some of the questions upsetting, however you don’t have to answer any questions you don’t want to. You can choose to not take part in the project, or leave the project at any time. In the event you feel you need some emotional support, please contact the Ottawa Regional Cancer Foundation at 613-247-3527 or email@example.com
WHAT IS THE BENEFIT TO PARTICIPATING?
You may not receive a direct benefit from being in this project, but your participation will be used to support a greater understanding of the needs of cancer survivors and those caring for them throughout Eastern Ontario. It will also raise awareness of the challenges of cancer, and can help develop local programs and services to address these needs and ultimately improve the long term quality of life of people impacted by cancer.
HOW WILL MY IDENTITY BE PROTECTED?
All information that you provide will only be used for this project, will be kept confidential and your anonymity will be protected at all times. There is a minimal possibility of loss of privacy or confidentiality. The Ottawa Regional Cancer Foundation is satisfied that every precaution has been taken by the Cancer Support Community and Patient Planning Services, which are based in the United States, to ensure that all records will be kept as private as possible according to all local, state, and federal laws. Only trained members of the research team will be able to link contact information to survey responses, and this link will be kept as secure and confidential as possible. Your name and other personal information will not be used in a way that anyone outside of the trained research team could identify you. Your email is obtained only for the purposes of completing the registration process, but this information will not be linked in any way to your survey responses. Please see the Ottawa Regional Cancer Foundations Health Information policy for more details: here
CONSERVATION OF DATA:
Your data will be housed in the United States with a reputable well established vendor approved by the Cancer Foundation (Rackspace). The Cancer Foundation retains ownership of the data collected for this project. A project report will be provided to the Ottawa Regional Cancer Foundation by the Cancer Support Community to help us understand the current quality of cancer care and the needs of our survey respondents. The Ottawa Regional Cancer Foundation may also publish the results from the data in scientific journals, or present these results at professional meetings. However names of participants will not be used. The Ottawa Regional Cancer Foundation will work with the Cancer Support Community to prepare releases of this information at the completion of the project.
By clicking continue below, you are consenting to participate in the What Matters to You Project’’ (Ottawa Regional Cancer Foundation) conducted by the Cancer Support Community and Patient Planning Services for the Ottawa Regional Cancer Foundation.
You have reviewed the information and understand what your participation involves. You agree to participate in this project conducted by the Cancer Support Community and Patient Planning Services for the Ottawa Regional Cancer Foundation. You understand and agree that the Cancer Foundation retains ownership of your personal data collected for this project and that this data will be housed securely in the United States of America in compliance with the Foundation’s policies and applicable legislation.