Background
Cancer at young ages is increasing in Canada and globally, though we do not understand why currently. As cancer care systems were designed for an older population, it is important to understand how they must be adapted to meet the needs of younger populations. Cancer at young ages can also have long-term impacts on physical and mental health, so we need to understand who is at risk and what supports are needed during survivorship care. The goal of Dr. Fidler-Benaoudia’s research program is to improve care outcomes across the cancer care continuum for children, adolescents and young adults (AYA).

To advise Dr. Fidler-Benaoudia’s AYA cancer research program, we are seeking individuals who were diagnosed with cancer between the ages of 15-39, and are at various stages of their cancer journey, to join our Patient and Family Advisory Council (PFAC). We also want to include caregivers, parents, and siblings of individuals diagnosed with cancer in this age range. In particular, we are seeking Indigenous and rural representation on the council. Purpose of the Patient and Family Advisory Council (PFAC)

The Patient and Family Advisory Council (PFAC) is vital to Dr. Fidler-Benaoudia’s AYA cancer research program. Your involvement is invaluable as it provides real-life insights into the experiences of those affected by cancer. This helps us to develop more relevant, empathetic, and impactful studies. By identifying areas for improvement in care, suggesting research priorities, and promoting patient/caregiver/support engagement, you contribute directly to the research evidence that can lead to better outcomes and enhanced quality of life for AYA cancer patients.

The following studies are ongoing or scheduled to start:
-Identifying risk factors for AYA cancer and ways to improve cancer knowledge in youth
-Investigating the risk of subsequent cancers, chronic health conditions and mortality
-Exploring cofertility care and pregnancy outcomes
-Harnessing physical activity to improve health and wellbeing after cancer
-Understanding use of Medical Assistance in Dying (MAID)

Roles and Responsibilities
Patient and Family Advisory Council (PFAC) members will engage in the program’s research by
-Advising
-Brainstorming
-Collecting and analyzing data (i.e. co-conducting focus groups, interviews, thematic analysis, etc.)
-Connecting with other stakeholders
-Co-developing protocols/processes/educational tools
-Identifying research priorities
-Providing feedback/approving activities/documents
-Other activities as agreed by the PFAC and Principal Investigator

Time Commitment
While the research program itself has no fixed end date, individual studies within the program do. PFAC will prioritize studies that benefit most from member input. Online meetings will be 1 hour and 30 minutes long and the next meeting date will be decided at the end of each meeting.

A calendar invite will be sent to all members once the meeting date is decided. Any changes to the meeting times will be communicated well in advance. Discussions about any breaks or pauses to regularly scheduled meetings will be decided by the council.

Compensation/Reimbursement
PFAC members will be offered compensation at a rate of $25/hour via gift cards following each scheduled meeting. Compensation will only be extended to attending members.

For more information or to apply please connect with
Onyebuchi (Buchi) Omodon
Onyebuchi.omodon@albertahealthservices.ca
403.476.2992
Or
Dr. Miranda Fidler-Benaoudia
Miranda.Fidler-Benaoudia@albertahealthservices.ca
403.355.3277