Opportunities - Patient Engagement in the RESILIENCE Trial

Patient Engagement in the RESILIENCE Trial
Department of Agriculture, Food and Nutritional Science
University of Alberta

Many people struggle with their well-being after cancer treatment. Improving health is possible by making changes in how they eat, stay active, and take care of themselves. Digital health platforms are a new way to help with different aspects of health and empower patients to take control of their own health.

Digital health platforms work best when they are tailored to patients. To improve digital health platforms designed to help cancer survivors, it is crucial to include cancer survivors in research teams. But few studies have partnered with cancer survivors. We are asking cancer survivors who are interested in joining research teams as partners to participate in our interview. Participants will be asked questions about their opinions on working in academic research.

Additionally, endometrial cancer survivors will be asked to fill out a survey and join a focus group. They will also be asked to join our RESILIENCE research team. The RESILIENCE trial is a study trying to improve the health of endometrial cancer survivors by using a digital health platform.

Roles and Responsibilities
This is initially a participant opportunity. In our interview, participants will be asked questions about their opinions on working with a research team.

Participants who are endometrial cancer survivors will be asked to complete a survey and continue in a focus group meeting. They will also be invited to join the RESILIENCE research team as patient partners. Patient research partners will collaborate on different research activities depending on what they like and have time for. However, they will be expected to attend regular meetings and share their insights and feedback on the project processes and progress. Patient partners can choose to be involved from 6 months up to the entire 5 years of the RESILIENCE trial.

Patient research partners will also be expected to participate in 3 evaluations of their engagement throughout the study.

All activities and meetings will be held virtually.

Time Commitment
The interview will last up to 75 minutes (including preparation). The survey for endometrial cancer survivors may take 20-60 minutes to complete, and the focus group will last up to 2 hours.

Individuals joining as patient partners will discuss with the research team the amount of time they are able to contribute. They will also discuss the activities they are interested in. The time commitment will depend on the preferences of patient partners and the activities they are involved in. The project aims to start in January 2024. Research activities will take up to 38 hours over the 5-year period of the study. Patient partners can choose to be involved for as little as 6 months.

For the interviews, participants will be offered up to $25.00 as token of appreciation. For the focus group meeting, participants will be offered $25. We are unable to offer a token of appreciation to participants completing the survey.

Individuals who continue as patient research partners will be offered compensation. The compensation will be based on the AbSPORU guidelines ($25/hr). Patient partners will be offered compensation for their preparation and attendance at the research team meetings. They will also be compensated for their collaboration on the additional aspects of the project. The total amount they can be compensated is up to 38 hours.

For those interested, please complete the screening survey here:  https://redcap.link/RESILIENCE

A member of the study team will contact you after the completion of the screening survey if you are eligible to participate.

For more information
Lourdes Ramirez

Ethics ID: Pro00131854; Version: December 18, 2023; Principal Investigator: Dr. Carla Prado