(16) Development of a Neonatal Family Research Advisory Council

Background: Pediatric research studies uniquely benefit from incorporation of parental, family, and community engagement. Over the past decade, major gaps have been identified in the ways that pediatric participants, parents, and families experience involvement in pediatric research. Thus, engaging participants directly in the construct and delivery of research has increased. Importantly, former patients and families have become more directly involved in research as co-investigators or in preparatory planning.

Objectives: We sought to form a specific Neonatal Family Research Advisory Council (NFRAC) to inform all levels of the research process involving neonates and their families.

Design/Methods: Throughout 2023, five virtual one-hour meetings with interdisciplinary team members were held to perform initial brainstorming as to how best to create a NFRAC. A literature review on patient family advocacy groups was performed to determine best practices to form a sustainable group. Each meeting involved narrowing the scope, fine-tuning goals, and devising the format of such a group. These meetings culminated in a local grant application and support from the Meriter Foundation.

Results: We started family recruitment using fliers and direct letters for the NFRAC in December of 2023. We have had seven interested family members. Other committee members include those in Table 1. We have had two virtual combined meetings with both the medical/research team members and family members. Four family members participated in both the first and second meetings. The first task of the group was jointly decided to be prioritization of best practices in approaching families for neonatal consent (Table 2). Future projects include review of protocol templates, consent forms, trial endpoints and outcomes, and creation of research brochures. Limitations of the current group include: most family members having a science or healthcare background and there is limited racial and ethnic diversity.

Conclusion: The formation of a NFRAC has resulted in a combined group of family and medical/research team members who are motivated to improve the research process. Further funding will be critical to maintain this group and encourage continued participation. Future goals will be to include family members in the funding and study trial design process. This model may translate well to other pediatric research groups.