Building responsive governance for learning networks

Abstract

Introduction: This article describes a strategic governance review of Improve Care Now (ICN), a learning health network focused on improving clinical outcomes for adolescents with Crohn's disease and ulcerative colitis (IBD). ICN is organized around an “enhanced” patient registry and collaborative community of patients, parents, clinicians, and researchers. Methods: The engagement included a review of ICN's governing documents, interviews and facilitated sessions with ICN stakeholders, and desk review to identify governance best practices that applied to ICN. Results: The review made recommendations to establish a plan to transition ICN's governance to its community, build pipelines for future network leaders, escalate uncommon data-sharing decisions, and design safe online spaces for community members. Conclusions: Governance can provide the scaffolding to help networks grow: organizing structures that support consistent, well documented, and inclusive decision-making.