ImproveCareNow: A Learning Health System for Children with Crohn's Disease and Ulcerative Colitis - Phase I

The ImproveCareNow (ICN) Network is poised to become a reusable, scalable, and sustainable peer-production Learning Health System (LHS) in which patients and clinicians collaborate to learn from every interaction, conduct patient-centered outcomes research (PCOR), and implement the findings. ICN has developed and piloted programs to fully engage patients, clinicians, and researchers as equal partners, but these programs are not yet at scale. ICN has extensive, standardized clinical data but has not yet collected patient-reported outcomes (PROs) from the vast majority of patients. To complete ICN’s transformation, we propose to: 1) implement a full-scale peer-production system that engages patients, families, clinicians, and researchers working together to conduct research and improve health outcomes and health care; and 2) develop the infrastructure to assemble a comprehensive set of longitudinal patient-centered data.

ICN’s mission is to transform the health, care, and costs for children and adolescents with Crohn’s disease and ulcerative colitis—inflammatory bowel disease (IBD). Since 2007, the proportion of patients in remission (with inactive disease) has increased from 55 percent to 77 percent, and 95 percent of patients approached have consented for research. ICN has grown to 56 sites that provide care for 17,000 patients in 30 states—about one-third of all children with IBD in the United States.

With support from National Institutes of Health (NIH), ICN has partnered with the C3N Project to develop and test interventions to transform itself into a peer-production system in which patients, parents, clinicians, and researchers collaborate to produce information (e.g., clinical data and PROs), knowledge (e.g., informal insights and formal research), and know-how (about how to change care) to improve health care and health outcomes. With support from Agency of Healthcare Quality and Research (AHRQ), we built on open-source software to enhance the ICN registry to enable clinicians to collect data once, using the electronic health record (EHR), and to reuse the data to automate chronic care processes, quality improvement (QI), and comparative effectiveness (CE) research, and we are extending this infrastructure to capture laboratory and pharmacy data.

With funding from PCORI, we will implement the peer-production model at scale, dramatically expanding and enhancing patient and family participation in governance, research, and dissemination and implementation activities; broaden the range of data collected to include PROs and claims data; and work with other patient-powered research networks (PPRNs) and CDRNs to implement data standards for interoperability and data exchange.