We discuss informatics-based challenges of constructing large-scale collaborative networks for healthcare research and analysis from rural community health centers. These types of networks provide data access and analytic insights across multiple heterogeneous health centers for both healthcare professionals and biomedical researchers. Challenges fall into three general categories: data access, data integration, and technical infrastructure. Data access issues arise in balancing patient privacy, security, and utility; data integration issues persist from each site independently operating its desired electronic medical record; technical infrastructure challenges include creating an analysis and reporting hub capable of scaling across a large collaborative network. Other challenges, such as the difficulty of site recruitment, are important to discuss, but cannot be solved directly through informatics alone. We discuss these challenges and their potential solutions in the context of our implementation of the Kentucky Diabetes and Obesity Collaborative (KDOC). KDOC is a network of Federally-Qualified Community Health Centers (FQHCs) that established a collaborative infrastructure for research and analysis of obesity and diabetes in rural and under-served communities.
We demonstrate that the open-source i2b2 (Informatics for Integrating Biology and the Bedside) data model can be used to bootstrap rural health analytics and learning networks. These networks promote communication and research initiatives by providing the infrastructure necessary for sharing data and insights across a group of healthcare and research partners. Data integration remains a crucial challenge in connecting rural healthcare sites with a common data sharing and learning network due to the lack of interoperability and standards within electronic health records. The i2b2 data model acts as a point of convergence for disparate data from multiple healthcare sites. A consistent and natural data model for healthcare data is essential for overcoming integration issues, but challenges such as those caused by weak data standardization must still be addressed. We describe our experience in the context of building the West Virginia/Kentucky Health Analytics and Learning Network, a collaborative, multi-state effort connecting rural healthcare sites.
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