Collaborative chronic care networks of the future will be major contributors to advances in clinical knowledge. What will this future look like? Pediatric gastroenterologists at a majority of centers commit to working together to improve the care and outcomes of their patients, forming a network in which data from all patient visits are collected for a common database; analyses are used immediately for quality improvement and subsequently for research; open-source science ensures that patient data are widely available for investigation; and a federated (centralized) institutional review board provides efficient and effective protection of patient confidentiality. The clinician quickly enters information about the patient during each clinic visit on a standardized form in the electronic health record; the data are electronically extracted and made accessible to the common database, directly or through a local node; data-in-once ensures that patient data are not wasted but are used for clinical care, improvement, and research. The network provides frequent reports that clinicians use for clinical decisions, population management, previsit planning, self-auditing, and redesign of care delivery. Patients, families, clinicians, researchers, and improvement scientists communicate and work together in this collaborative chronic care network (C3N). Patient-reported outcomes are included as well. Is this realistic? The ImproveCareNow Network (1–5), which has grown to 36 centers with 300 pediatric gastroenterologists and 10,000 patients with Crohn disease and ulcerative colitis, is becoming such a C3N, a learning health system for improvement, innovation, and discovery. A Canadian network has an opportunity to do so as well (6).
1. Crandall W, Kappelman MD, Colletti RB, et al. ImproveCareNow: the development of a pediatric IBD improvement network. Inflamm Bowel Dis
2. Crandall WV, Boyle BM, Colletti RB, et al. Development of process and outcome measures for improvement: lessons learned in a quality improvement collaborative for pediatric inflammatory bowel disease. Inflamm Bowel Dis
3. Crandall WV, Margolis PA, Kappelman MD, et al. Improved outcomes in a quality improvement collaborative for pediatric inflammatory bowel disease. Pediatrics
4. National Institutes of Health TR01. Open Source Science: Transforming Chronic Illness Care
. Grant 1-R01DK085719-01, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), 2009–2014.
5. Agency for Healthcare Research and Quality. Building Modular Pediatric Chronic Disease Registries
. 1 HS R01 HS 20024-01, 2010–2013.
6. Sherman PM, Brown S, Rose K, et al. Workshop report: developing a pediatric inflammatory bowel diseases network and data platform in Canada. J Pediatr Gastroenterol Nutr