Megan Doerr, MS, LGC - Sage Bionetworks & Joon-Ho Yu, MPH. PhD - University of Washington

ELSIconversations - March 5, 2021

Big data (BD) informs nearly every aspect of our lives and, in health research, is the foundation for basic discovery and its tailored translation into healthcare. Yet, as new data resources and citizen/patient-led science movements offer sites of innovation, segments of the U.S. population with the lowest health status are least likely to engage in BD research either as intentional data contributors or as “citizen”/community scientists. The aims of this study are to capture uses of BD (“use cases”) from the perspectives of community leaders and to identify needs and barriers for enabling community-led BD science. We conducted a qualitative content analysis of semi-structured key informant interviews with 16 community leaders. Based on our analysis findings, we developed a BD Engagement Model illustrating the pathways and various forces for and against community engagement in BD research. The goal of our Model is to promote concrete, transparent dialogue between communities and researchers about barriers and facilitators of authentic community-engaged BD research. Findings from this study will inform the subsequent phases of a multi-phased project with the ultimate aim of organizing fundable frameworks for BD projects within community settings.