A governance and legal framework for getting to “yes” with enterprise-level data integration

Abstract

Public agencies routinely collect administrative data that, when shared and integrated, can form a rich picture of the health and well-being of the communities they serve. One major challenge is that these datasets are often siloed within individual agencies or programs and using them effectively presents legal, technical, and cultural obstacles. This article describes work led by the North Carolina Department of Health and Human Services (NCDHHS) with support from university-based researchers to establish enterprise-wide data governance and a legal framework for routine data sharing, toward the goal of increased capacity for integrated data analysis, improved policy and practice, and better health outcomes for North Carolinians. We relied on participatory action research (PAR) methods and Deliberative Dialogue to engage a diverse range of stakeholders in the co-creation of a data governance process and legal framework for routine data sharing in NCDHHS. Four key actions were taken as a result of the participatory research process: NCDHHS developed a data strategy road map, created a data sharing guidebook to operationalize legal and ethical review of requests, staffed the Data Office, and implemented a legal framework. In addition to describing how these ongoing streams of work support data use across a large state health and human services agency, we provide three use cases demonstrating the impact of this work. This research presents a successful, actionable, and replicable framework for developing and implementing processes to support intradepartmental data access, integration, and use.

Keywords

• data governance
• data sharing
• ethical data use
• health and human services
• legal framework