Development of a patient advocate committee for a pediatric biobank

The Kids Eye Biobank is a pediatric ophthalmology biobank with a dedicated eye cancer collection. It centralizes data (e.g., biological samples, images, and clinical data) for use in future research. Recognizing the importance of patient engagement in research, the Kids Eye Biobank was designed with a patient-centered governance model, which includes a patient advocate committee (PAC). This study describes the development of the PAC and its outputs. Patients (defined as anyone with lived experience of pediatric eye disease) were recruited by contacting pre-existing research partners, patient advocacy networks (e.g., Canadian Retinoblastoma Research Advisory Board), and biobank participants/families. A patient engagement plan was created to guide the PAC's work; PAC members refined and prioritized goals. The PAC reviewed the Kids Eye Biobank’s governance structure and were invited to sit on additional committees. Monthly PAC meetings were held, during which members worked on implementing goals outlined in the patient engagement plan. As of August 2025, there were six PAC members; five live in North America and one lives outside of North America. Two members had eye cancer as children, three were parents of children with eye cancer, and one member had dual experience. The PAC held 19 virtual meetings. PAC members ranked goals within the patient engagement plan, choosing to focus efforts on Biobank participant recruitment, PAC member mentorship, and contributing lived experience to the Kids Eye Biobank’s informed consent process. A “Participant Information Pamphlet” was reviewed and edited to recruit biobank participants. The PAC created an “Information Guide” to sensitize and train new patient partners. After reviewing the informed consent process, PAC members identified the need for and created a patient-centered tool to facilitate informed consent discussions. Additionally, three PAC members joined other governing committees to enhance the Kids Eye Biobank’s patient-oriented operations. PAC member commitment is demonstrated by regular meetings, project progression and involvement throughout the Kids Eye Biobank’s governance and operations. Patient partners made unique contributions from their lived experience to suggest enhancements to the Kids Eye Biobank’s communications, related to participant recruitment, PAC member mentorship, and the informed consent process.