Connecting cancer research and communities: Assessing barriers and facilitators to the implementation of a community scientist program

ABSTRACT

Introduction: Community Scientist (CS) programs - often referred to as Citizen Scientist programs - that facilitate direct engagement between scientific researchers and community members have emerged as effective strategies for building community trust in scientists and better informing research design and dissemination to address true community needs. While population health research has increasingly incorporated community stakeholders into the research continuum, basic and translational sciences struggle to do the same and may contribute to cancer disparities. We designed and implemented a virtual CS program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University (LCC). We report barriers, facilitators, and lessons learned. Methods: Translational scientists (TSs) were recruited from among LCC investigators, and CSs were identified for participation from among LCC community networks. We sought to recruit a CS cohort representing LCC's catchment area and a TS cohort whose research focuses on cancers most impacting LCC catchment. CS program interactions included monthly meetings between two CSs and one TS wherein the CS-TS triad discuss TS research in lay terms and work together to co-create educational infographics suitable for dissemination to the catchment and LCC scientists. Virtual attendance was tracked and meeting recordings retroactively reviewed to identify and create product development. Results: Six CSs and three TSs agreed to participate in the CS program. The CS cohort includes cancer survivors, patient advocates, community organization leaders, a nurse, and an educator, while the TS cohort includes breast, prostate, and lung cancer researchers. Currently, 11 of 18 triad meetings have been completed, with attendance averaging 97%. Barriers to program implementation have included technological difficulties, restrictions on in-person meeting, scheduling conflicts, time limitation, and language barriers, while facilitators have included small group meetings to promote comfortable group-member contribution, presence of a trained facilitator, articulation of achievable meeting goals and mission for product creation, and clear assignment of team roles. Conclusion: The COVID-19 pandemic has illuminated pre-existing needs for improved connectivity between communities impacted by cancer disparities and cancer researchers. By identifying current barriers and facilitators to successful virtual CS program implementation, our findings can be used to guide development and implementation of similar programs at LCC and other cancer centers that are aimed at mitigating cancer health disparities.