Population-based data and community empowerment

Abstract

This chapter focuses on the transformation of population-based data and data systems into social resources that actively contribute to social, economic and political solutions to reduce health inequities. Our first underlying premise is that current systems of population health data collection, management, analysis and use are too often disconnected from the communities being described and whose data are being collected. Our second and related premise is that, in order for data to become a tool for social empowerment and social change, the social structuring of data governance and management must change from systems that reinforce social exclusion by marginalizing communities from their data to systems in which communities are fully and centrally involved in data decision making. The first part of this chapter rationalizes these premises by providing examples of the ways in which existing data systems undermine the broader mission of social epidemiology to identify effective interventions that alleviate conditions of social marginalization and poverty. The remainder of the chapter focuses on strategies for transformation in health and social data and data systems.