Data collection and management in community engaged research: Lessons learned from two community-based participatory research partnerships

Background: Data collection and data management (DCDM) within community-engaged research (CEnR) requires special considerations that differ from those of traditional research. To date, little guidance exists to preemptively help community– academic partnerships anticipate and resolve DCDM issues that may arise. Objective: We sought to provide recommendations for DCDM based on two CEnR research projects. Methods: We used a case study design to describe the DCDM process and lessons learned that were generated through formal and informal discussions between community and academic partners. Lessons Learned: We identified 4 key lessons: 1) CEnR requires a flexible, iterative approach to DCDM, 2) there are trade-offs to having a flexible DCDM approach, 3) responsibilities for DCDM should consider the skill sets and priorities of all partners, and 4) nuances of DC within CEnR has important implications for human subjects and ethics training. Conclusions: Based on our lessons learned, we provide recommendations for how to approach DCDM within CEnR.