1844-LB: Community Engaged Research—Lessons Learned from a Pediatric Type 1 Diabetes Study

Introduction and Objectives: Community engaged research (CER) involves partnering with community stakeholders (e.g., patients, families, providers) who are experts on their “lived experience” rather than only considering the researchers’ perspectives. However, pediatric type 1 diabetes (T1D) studies with a CER approach are limited. The current study employs CER to develop strategies to increase engagement of underrepresented families in T1D research. This abstract focuses on the lessons learned about the process of engaging with community partners on research.

Methods: Four CER expert consultants guided the recruitment of community partners, as well as development of partner meeting agendas and execution of meetings. Five adolescents with T1D and their caregivers and four T1D providers (1 endocrinologist, 2 advanced practice nurses, 1 pediatric psychologist) agreed to partner in this research project. During separate monthly meetings, family and provider partners provided feedback on research recruitment and data collection strategies.

Results: CER requires unique skills and ongoing support from experts across five areas, (1) recruitment of partners (clarity on time demand, nature of partner role), (2) planning meetings (creating clear, accessible meeting materials), (3) conducting meetings (supporting inclusive and respectful environment), (4) incorporating partner feedback in research strategy (interpreting partner comments, balancing feedback with science), and (5) maintaining partner engagement (responding to partner requests, sharing how feedback is or is not used).

Conclusion: Keys to successfully engaging and maintaining relationships with community partners in pediatric T1D research include consulting with CER experts, clearly sharing the purpose and intentions of partnerships, and highlighting how feedback is improving the project. Employing a CER approach is critical to increase the inclusivity and relevance of pediatric T1D research.