Posted by Peter Margolis on August 28, 2012
ImproveCareNow and the Collaborative Chronic Care Network (C3N) project
We all know the current system of chronic illness care isn’t working. It’s not working for kids with diseases like Crohn’s disease and ulcerative colitis; like Bianca (not her real name) that experience a lot of pain. But pain is the least of Bianca’s worries. Without optimal treatment, she’ll likely have stunted growth, possible arthritis, and a significant risk of surgery. And many normal childhood events like sleepovers or birthday parties….. a real stress.
The system is also not working for Dr. Sandy Roan (also not her real name), Bianca’s doctor. Dr. Roan has a variety of treatment options, but the “best evidence,” the evidence that results from randomized trials, can’t provide information on what will work best for a particular individual.
It’s also not working for Bianca’s mom, Anna, because the care delivery model doesn’t make it easy for her participate in Bianca’s care. She is wondering about trying diet modifications to see how best to control Bianca’s symptoms. She keeps an eye on what's going on but feels the doctor’s role is to come up with solutions. She doesn’t really see the collaborative possibilities.
Finally, it’s not working for Dr. Vincent Kapoor (not a real name). He’s a researcher interested in improving IBD care but he’s faced with small unrepresentative data sets, and a lack of easy and productive ways to share data and increase the impact and reach of his research.
The Institute of Medicine’s “learning healthcare systems” model provides an exciting vision in which patients, clinicians and researchers work together to choose care based on best evidence; together they drive discovery as natural outgrowth of patient care; and ensure innovation, quality, safety and value, all in real-time. But so far, neither patients, nor doctors, nor researchers have easy access to such system.
What if we could harness the collective intelligence of patients, clinicians and researchers to create such a system? Think of Wikipedia, or, in science, how open, rapid sharing of data in advance of publication in the human genome project accelerated the sequencing years ahead of schedule. These are examples of how the production of knowledge, information, and know-how can be distributed over large groups of people. Yochai Benkler, of Harvard, calls this form of production network-based or “social” production.
Network based production is suited to complex systems like health care, precisely because the necessary knowledge, skills and tools are often beyond the capacity of one place, one person, or one organization; because the stakeholders in the process, patients, clinicians and researchers, are motivated and have skills that can be devoted to the task; and finally because the scientific questions about how to accomplish improvements in health and health care, require a multidisciplinary complex systems science perspective.
With combined support from the NIH transformative research program, a US Agency for Health Care Research and Quality Enhanced Registries grant and 38 ImproveCareNow Network care centers; a team of patients, families, clinicians and researchers are working together to create what we call a collaborative chronic care network or C3N. A C3N is a network-based production system for health and health care.
Does this sound like an outlandish idea? It’s not; it’s actually already taking place. In the ImproveCareNow Network pediatric gastroenterologists are working together to share their collective wisdom and know-how to continuously improve the care and outcomes of children and adolescents with Crohn’s disease and ulcerative colitis. The percent of patients in remission has risen and been sustained without the introduction of new medications.
How did ImproveCareNow do it? SHARING - sharing data, sharing knowledge, sharing know-how, and sharing work. Every ImproveCareNow center pools their data, compares outcomes, standardizes care and learns from one another about how to get better results. An article in this month’s New Yorker, by Atul Gawande describes how standardizing and making care more reliable can make medicine more effective and lower cost. http://www.newyorker.com/reporting/2012/08/13/120813fa_fact_gawande
The C3N project is collaborating with the ImproveCareNow Network to take our work to the next level; redesigning an existing clinician-centric network into one that involves everyone – patients, families, clinicians and researchers.
How do you create a network based production system for health and health care? In my next post, I’ll write about the three ways in which patients, families, clinicians and researchers are co-designing this new system.
In the meantime, you can learn more about the ImproveCareNow Network at https://improvecarenow.org; the C3N Project at https://c3nproject.org, and listen to the talk delivered at the Patient-Centered Outcomes Research Institute, which forms the basis for this post: http://youtu.be/FxYbSEXWzhU