Running down a dream: experiences building peer-produced learning health systems

Michael Seid michael.seid@cchmc.org
Erin Moore erin.moore@cchmc.org
Joyce Lee joyclee@med.umich.edu
George Dellal George.Dellal@cchmc.org

Abstract

A collaborative chronic care network (C3N) is a peer-produced learning health system. It is a platform that facilitates collaboration among patients, clinicians, and researchers to produce information, knowledge, and know-how to improve health and health care.  Like other network production systems, a C3N is composed of active agents self-organizing to fix problems important to them, using tools that make the work easier to do and platforms that enable aggregation of learning. Key features of a C3N are a culture of collaboration between and among patients and clinicians, as well as tools to make collaboration easier to do.

The prototype C3N is ImproveCareNow, which has grown from 7 to more than 70 care centers and has improved the remission rate for youth with Inflammatory Bowel Disease from 60% to 80% without new medications. An ‘Enhanced Registry’ allows data-in-once that flows directly to EHR and the registry – data is then used for clinical care, QI, and research. A culture and expectation of involvement by all has grown a core group of over 250 parents, patients, clinicians, and improvers who have developed and tested dozens of innovations. Ongoing collaborative quality improvement ensures continued learning and improvement across all care centers. The C3N Project is now working with the CF Foundation and the T1D Exchange on designs and change strategies to replicate this model in Cystic Fibrosis and Type 1 Diabetes.

Panelists represent experience with all three networks and will share their experiences with a focus on the start-up phase of designing and building C3Ns:  

  • Blending QI with design thinking and peer-production principles to design C3Ns
  • Increasing agency and skills of e-patients, clinicians, and researchers to transform care through design thinking, QI skills, and community organizing.
  • Creating a culture of collaboration, co-production, generosity, and trust across stakeholder groups.
  • Overcoming barriers to collaboration and reducing transactional costs
  • Designing for contribution and what happens when parents become ‘co-owners’ within the network.

As a result of this session, audience members will gain familiarity with the concept of a peer-produced learning health system and the key tools for beginning the process of designing and building a C3N.

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