Information, Membership Conditions, Screening Process, and Consent
Thank you for your interest in the Marathon of Hope Atlantic Cancer Consortium (MoH ACC) Patient Advisory Committee.
Please read this document carefully.
If you have any questions, please contact Dr. Sevtap Savas, Division of Biomedical Sciences, Faculty of Medicine, 300 Prince Philip Drive, Room 5M324, St. John’s, NL, A1B 3V6;
Phone: 709-864 6507, email: firstname.lastname@example.org.
Our aim is to create an inclusive, Atlantic Canada-wide community-based Advisory Committee on cancer research and public engagement.
This committee will advise and work on research and public engagement priorities of people affected by cancer in Atlantic Canada. It will also support the activities of the researchers of the Marathon of Hope – Atlantic Cancer Consortium (MoH ACC).
We aim to have 12 representatives, including cancer patients, survivors, and family members from the four Atlantic Canadian provinces: New Brunswick, Newfoundland and Labrador, Nova Scotia, and Prince Edward Island.
Why is it important to form this committee?
Partnering with community members affected by cancer and working with them is important to us. The Patient Advisory Committee will help in understanding the experiences, priorities, perspectives, and concerns of patients and families affected by cancer in Atlantic Canada.
Researchers with the Atlantic Cancer Consortium conduct studies that could greatly benefit from partnerships with cancer patients. Particularly, studies in Precision Medicine are a current focus point of the Terry Fox Research Institute.
Precision Medicine is a new frontier in cancer treatment which aims to tailor interventions to the individual differences between cancer patients. As a new area of treatment, the priorities of those affected by cancer are particularly vital.
Additionally, dissemination of knowledge related to cancer, and the organization of public events on cancer can greatly benefit from the input of patient and family representatives.
Who are we?
The Patient Advisory Committee is led by the following project lead/investigator:
- Dr. Sevtap Savas (Faculty of Medicine, Memorial University)
The following physician/investigator is also a part of this project:
- Dr. Angela Hyde (Faculty of Medicine, Memorial University; NL Health Services)
Who is the funder?
This initiative is funded primarily by the Terry Fox Research Institute.
What is expected from me?
If you are selected to be a member of the Patient Advisory Committee:
The Patient Advisory Committee, including the public members and investigators, will meet remotely to conduct meetings (online or teleconference).
We anticipate that the Patient Advisory Committee will meet regularly, at least once every 2 months. If needed, we will communicate by emails and/or phone between meetings. At our first meeting, the committee will create its own Terms of Reference to guide our work. We anticipate around eight meetings per year.
Each Patient Advisory Committee member will sign a Confidentiality Agreement; however, protection of committee members’ privacy cannot be guaranteed. For example, together with other information, information in the reports and presentations on the committee work may indicate/identify you.
This is a voluntary position that includes a potential one-time annual honorarium to be offered ($500) in 2024 and in 2025, pending the approval of funds.
We hope to create summaries of the Patient Advisory Committee’s discussions and widely share its work with the public, provincial Health Authorities, and researchers. These communications could include media releases, presentations, manuscripts, and reports to the Funder. In communications about this group, we have the option to name group members and thank them for their contributions to the work. We would only use your name like this if you gave us permission to do so.
The summary of information discussed during our meetings and committee communications will be kept for 5 years.
We aim to have an inclusive committee with diverse members that are representative of the Atlantic Canada population.
We hope this Patient Advisory Committee will have representatives from all four Atlantic Canada provinces, individuals and groups that experience inequity and barriers to equal access, and those with under-studied cancers.
It is possible that we may get more than 12 individuals interested in sitting on this committee.
This means that we may have to screen and select the final committee members. For this purpose, we have Screening Questions for anyone who expresses an interest in this committee. To provide your information through our Screening Questions, you will have two options:
- Phone interviews. Interviews will be done by the project coordinator at the Faculty of Medicine, Memorial University.
- Completing an electronic form.
Please see the end of this document about these options.
Your response to the Screening Questions collected during this screening interview/process will be used to help select the members of the Atlantic Cancer Consortium Patient Advisory Committee, to make sure it is a diverse committee, and to ensure its diversity is maintained. Information may be shared with the project team and will only be used for this purpose.
We will keep personal information collected from you during the initial screening interview/process up to two years, in case we need additional members for this committee. This information will be kept in a secure network and can only be accessible by password protected computers. The project lead Dr. Sevtap Savas and the project coordinator at the Faculty of Medicine, Memorial University will keep this information secure. While we aim to keep your information confidential, there is a risk of unintentional release of information if there is a security breach in the system that stores your data.
After two years, the electronic copies of the personal information you provide during the screening interview/process will be destroyed.
If you are selected for this group, we will contact you soon, and your name and contact information will be provided to the investigators.
If these membership conditions and this screening process are acceptable to you, and you are interested in being a member of the Marathon of Hope Atlantic Cancer Consortium Patient Advisory Committee, then, please provide your responses to the Screening Questions by:
Completing an electronic form here: https://mun.az1.qualtrics.com/jfe/form/SV_e4e5AcXEpWQ7vV4
Scheduling a phone interview with Aaron Curtis, the project coordinator, at 709-864 6659.
Taking these steps implies that you consent to the collection of your information for the purpose described.
We will start the selection/interview process immediately.