Chronic illness kills too many and costs too much. Reducing this burden is possible, yet within our current health care system, Americans receive about 50% of indicated care and patients follow doctors'orders about as often. What if there was a way to create a vastly better chronic illness care system by harnessing the inherent motivation and collective intelligence of patients and clinicians? What if this system allowed patients and physicians to share information freely, collaborate to solve important problems, and use their collective creativity and expertise to act in ways that improve health? A system for transforming chronic care is possible - we intend to build it by designing, prototyping, optimizing, and evaluating a clinical collaborative care network (C3N). Our C3N is modeled after collaborative innovation networks (COINs),1, 2 cyberteams of self motivated individuals with a collective vision, enabled by the Web to achieve a common goal by sharing ideas, information, and work. The internet, though, has allowed COINs to deliver their full potential, with Wikipedia, Linux, and the World Wide Web Consortium itself as prominent examples. COINs are, however, new to chronic illness care and, while many doctors and patients use the Web to search for and find health information, existing health-related social networks separate patients from providers, despite the fact that patient-provider interaction is key to chronic illness care.3 Joining patients (patients and parents) and providers (physicians and other clinicians) in a shared collaborative network is a radically innovative approach in health care. It challenges the dominant chronic illness care system or paradigm, which views patients as objects on which to intervene, structures care around episodic one-to-one patient-physician interactions, and assumes an inherent power differential based on knowledge. Our proposed C3N challenges the paradigm by engaging patients as co-equals;by making interaction continuous through asynchronous one-to-one and one-to-many communication;and by leveling the knowledge gradient.
Our Specific Aim i s to design, prototype, optimize, and evaluate a patient-provider C3N to improve clinical practice, patient self-management, and disease outcomes of pediatric inflammatory bowel disease (IBD). Testing this hypothesis is important because changes within the current system are likely to lead to only incremental improvement. Harnessing the nascent power of social networking technology to join patients and providers in a shared collaborative to create a new system for clinical and self-management behavior change can transform clinical practice and the way that new clinical knowledge is generated. A successful example of such a network could have vast impact: If we are successful, C3Ns have the potential to transform chronic illness care across the US, saving hundreds of thousands of lives and billions of dollars.

Public Health Relevance

The current chronic illness system needs to be changed in order to deliver better care. This project will join patients and physicians together in a collaborative innovation network to design, prototype and optimize, and evaluate a system for improving the chronic illness care system. If successful, this project will lead to improved care and self- management, better outcomes for people with chronic illness, and lower costs of care.

National Institute of Health (NIH)
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Research Project (R01)
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Special Emphasis Panel (ZRG1-BCMB-A (51))
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Hamilton, Frank A
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Cincinnati Children's Hospital Medical Center
United States
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Seid, Michael; Dellal, George; Peterson, Laura E et al. (2018) Co-Designing a Collaborative Chronic Care Network (C3N) for Inflammatory Bowel Disease: Development of Methods. JMIR Hum Factors 5:e8
Ramsey, L B; Mizuno, T; Vinks, A A et al. (2017) Learning Health Systems as Facilitators of Precision Medicine. Clin Pharmacol Ther 101:359-367
Adler, Jeremy; Saeed, Shehzad A; Eslick, Ian S et al. (2016) Appreciating the Nuance of Daily Symptom Variation to Individualize Patient Care. EGEMS (Wash DC) 4:1247
Batalden, Maren; Batalden, Paul; Margolis, Peter et al. (2016) Coproduction of healthcare service. BMJ Qual Saf 25:509-17
Tung, Jeanne; Grunow, John E; Jacobs, Noel (2015) Pilot Development of an Electronic Pediatric Inflammatory Bowel Disease Quiz Game. J Pediatr Gastroenterol Nutr 61:292-6
Seid, Michael; Margolis, Peter A; Opipari-Arrigan, Lisa (2014) Engagement, peer production, and the learning healthcare system. JAMA Pediatr 168:201-2
Zuckerman, Barry; Margolis, Peter A; Mate, Kedar S (2013) Health services innovation: the time is now. JAMA 309:1113-4
Margolis, Peter A; Peterson, Laura E; Seid, Michael (2013) Collaborative Chronic Care Networks (C3Ns) to transform chronic illness care. Pediatrics 131 Suppl 4:S219-23
Burt, Ronald S; Meltzer, David O; Seid, Michael et al. (2012) What's in a name generator? Choosing the right name generators for social network surveys in healthcare quality and safety research. BMJ Qual Saf 21:992-1000
Crandall, Wallace V; Margolis, Peter A; Kappelman, Michael D et al. (2012) Improved outcomes in a quality improvement collaborative for pediatric inflammatory bowel disease. Pediatrics 129:e1030-41