Community Engagement in the Kaiser Permanente Research Program on Genes, Environment, and Health: Lessons learned and future directions

Community engagement has been described as a vital aspect of developing and implementing large-scale population-based biobanks. However, there are few case examples of how to organize and engage community members around biobanking efforts as well as how to integrate their feedback into the development, management, and oversight of these efforts. The purpose of this study is to a) provide a case study of a working community advisory panel (CAP) and community outreach and engagement core for Kaiser Permanente's Research Program on Genes, Environment, and Health (RPGEH) and b) provide recommendations regarding tools and methods for community engagement around biobanks. We examined how CAP feedback was incorporated into RPGEH program policies, and governance activities. The first CAP was initiated six years ago, at the inception of the RPGEH. The CAP has provided feedback on policy and programmatic issues such as the deposition of data into dbGaP, minority recruitment, and access to RPGEH data. The CAP's function has evolved and CAP members now have expanded roles within the RPGEH. They are represented on other advisory and governance bodies such as the Bioethics Advisory Panel and the Access Review Panel. Expanding these roles required the RPGEH and CAP to develop a common language to promote mutual communication, trust, and informed partnerships between researchers and community members. Within this case study, we explore challenges and discuss future directions for the CAP. Recommendations for tools and methods for community engagement in biobank programs are provided based on lessons learned from RPGEH's CAP.