Persons With Lived Experience (PWLE) are a critical piece of the pediatric cancer research world, as they supply the perspective of individuals with the disease and caregivers, and advocate for their joint needs. In order for PWLE to accomplish their goals, clear communication of project goals and methods is important.  It can be a challenge to bridge the gap between experts and PWLE. As a PWLE it can be overwhelming to enter an intense research environment as a person with no prior experience in the field. Right now, 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 insufficient.

Many PWLEs face barriers to meaningful advocacy and research engagement, stemming from educational barriers and limited access to structured training. However, little is known about the educational priorities and support needs of PWLEs, limiting the ability of organizations to develop education resources and training programs that align with their needs. This study aimed to identify the educational priorities, perceived knowledge gaps and barriers to advocacy and research engagement among Canadian PWLEs affected by childhood cancer.

A national cross-sectional needs assessment survey was distributed electronically to Canadian PWLEs of childhood cancer, including survivors, caregivers, family members (i.e. parents/guardians and siblings), bereaved relatives and those with hereditary cancer syndromes. The survey investigated experiences with advocacy and research engagement, perceived barriers to participation, educational priorities, and preferred learning formats. Data were analyzed using descriptive statistics.

Nearly 70 participants completed the survey. The findings showed that though many participants were actively involved in advocacy initiatives, participation in research partnerships. Participants described several barriers to engagement, such as competing time commitments, financial challenges, and uncertainty about how to access opportunities relevant to them. Respondents voiced interest in reinforcing their ability to support other families, engage with healthcare systems and policymakers, and contribute meaningfully to advocacy and research efforts. Educational priorities focused on practical skill development, mentorship, networking and accessible learning opportunities delivered through flexible formats.

This needs assessment identified a strong interest in advocacy and research engagement as well as a clear need for additional education and support among Canadian PWLEs. Addressing the barriers and learning priorities identified by participants may enrich opportunities for valuable involvement and promote more equitable participation across the childhood cancer community. These findings will guide the development of a national Patient Learning Institute tailored to the needs of PWLEs.

For more information, please contact Renu Jeyapala.