Persons With Lived Experience (PWLE) are a crucial part of the pediatric cancer research landscape, as they provide the perspective of individuals with the disease, and advocate for their collective needs. For PWLE to perform their role, clear communication of project goals and methods is critical, however, bridging the gap between experts and PWLE can sometimes be difficult. Additionally, it can be intimidating to enter an intense research environment as an individual with no prior experience. Currently, ACCESS is supporting PWLE with programs such as the PWLE subsidy that offer financial resources to allow PWLE to attend educational experiences such as conferences, workshops or courses related to childhood cancer. However, educational programs that are designed specifically for PWLE are currently lacking.

This project aims to begin addressing this gap by asking PWLE in the childhood cancer community in Canada where they feel they need more educational support and how they feel that support should be delivered. This will be done by sending out a large-scale digital survey to better understand knowledge gaps and needs and offer participants to join focus groups that will help further flesh out ideas generated in the survey.

The results of this study will be used by the team to support the ACCESS Learning Institute, a virtual space which will house the educational content and resources needed by the PWLE community. Since the content will be virtual and self-directed, it will be widely accessible, and it will be developed hand-in-hand with patients, advocates, researchers, and clinicians to ensure that the content is meeting the needs of all sides. Ultimately, this project aims to fill the current gap in PWLE education and empower this community to be able to make a difference in childhood cancer research in Canada.

For more information, please contact Renu Jeyapala.