Software-Enabled Distributed Network Governance: The PopMedNet Experience

INTRODUCTION: The expanded availability of electronic health information has led to increased interest in distributed health data research networks. DISTRIBUTED RESEARCH NETWORK MODEL: The distributed research network model leaves data with and under the control of the data holder. Data holders, network coordinating centers, and researchers have distinct needs and challenges within this model. SOFTWARE ENABLED GOVERNANCE: POPMEDNET: The concerns of network stakeholders are addressed in the design and governance models of the PopMedNet software platform. PopMedNet features include distributed querying, customizable workflows, and auditing and search capabilities. Its flexible role-based access control system enables the enforcement of varying governance policies. SELECTED CASE STUDIES: Four case studies describe how PopMedNet is used to enforce network governance models. ISSUES AND CHALLENGES: Trust is an essential component of a distributed research network and must be built before data partners may be willing to participate further. The complexity of the PopMedNet system must be managed as networks grow and new data, analytic methods, and querying approaches are developed. CONCLUSIONS: The PopMedNet software platform supports a variety of network structures, governance models, and research activities through customizable features designed to meet the needs of network stakeholders.