A Content Analysis of Stakeholder Interviews on Developing Pathways for Community-led Research with Big Data

Abstract

In an era where Big Data (BD) informs nearly all aspects of human life, there are profound opportunities to translate BD research to guide physicians, epidemiologists, health policy experts, and community leaders in making data-driven decisions to improve health outcomes and reduce health disparities. In order to derive the most benefit from BD research, opportunities are needed to facilitate and support a movement of community-led scientists to design BD research and derived products that intentionally and effectively reduce health disparities and promote health equity within their own communities. The aims of this study are to capture meaningful uses of BD (“use cases”) from the perspectives of community leaders and to identify what is needed for community members to engage with BD. 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 Framework that illustrates the pathways and various forces for and against community engagement in BD research, as described by our informants. We hope that our Framework will 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.