What Is Common Core Data for Brain Health Interventions?
摘要
This chapter examines the role of common core data in advancing brain health interventions by bridging clinical neuroscience research and community-based care. It argues that improving outcomes for individuals with brain disorders requires a holistic, data-driven approach that integrates multimodal data, ranging from clinical assessments and imaging to lived experiences, across both clinical and community contexts. Drawing on the Ontario Brain Institute’s Brain-CODE platform as a model, the chapter highlights how standardized data collection and harmonization have enabled robust research collaborations and actionable insights in clinical settings. It also explores the challenges of extending these practices to community organizations including diverse data types, limited infrastructure, and the need for flexible, context-sensitive standards. The chapter illustrates the benefits of common core data through the case of UPLIFT, a telehealth intervention for depression in epilepsy, showing that consistent data elements enable rigorous evaluation and scaling from clinical research to real-world community delivery. It further explores the complexity of defining and measuring “thriving” in brain health, emphasizing its multidimensional, dynamic, and context-dependent nature and notes examples of existing tools used to assess brain health. It ends with an argument that a collaborative data strategy uniting clinical and community perspectives can lead to more personalized, effective, and sustainable brain health system of care.