2:05 - 2:50 pmSunday, September 27
LK 120
Running down a dream: experiences building peer-produced learning health systems
LK 120
Running down a dream: experiences building peer-produced learning health systems
Co-PI, C3N Project
Cincinnati Children's Hosp.
Associate Professor, University of Michigan
Medicine X ePatient Scholar
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,... Read more


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.

Michael Seid, PhD, is Director of Health Outcomes and Quality of Care Research in the Division of Pulmonary Medicine and a Core Faculty in the James M. Anderson Center for Health Systems Excellence at Cincinnati Children’s Hospital Medical Center. With Peter Margolis, MD PhD, he is co-Principal Investigator of the C3N Project, funded by a Transformative R01 grant from the NIH to design and test a new system for transforming chronic care.

Joyce Lee, MD, MPH (“Doctor as Designer”) is a patient-centered design thinking evangelist, and a social media and technology enthusiast from the University of Michigan. As a pediatrician, diabetes specialist, and researcher, she is passionate about the notion that patient-centered participatory design combined with emerging technologies like social media, and mobile technology can transform the clinical research enterprise and the delivery of clinical care.

She is Associate Professor of Pediatrics at the University of Michigan Medical School and the Department of Environmental Sciences at the School of Public Health and sees patients and families at Mott Hospital. The main focus of her research is on pediatric diabetes and obesity, and she uses a variety of methodologies to study these areas, including epidemiologic analyses, modeling techniques, applied clinical research, cost- effectiveness analysis, and social media/mobile technology.

She is a co-creator of HealthDesignby.us, a collaborative innovation network of individuals promoting participatory design and the creation or “making” of health by a community and she is co-director of the Mott Mobile Technology Program for Enhancing Child Health. She also serves as Social Media/Web Editor for JAMA Pediatrics. She blogs about design and health at https://medium.com/@joyclee encourages you to follow her on Twitter https://twitter.com/joyclee! and would love for you to join the health + design community here: http://healthdesignby.us7.list-manage1.com/subscribe?u=a7017016cdfe04b1abe03d358&id=60d148385c.

Erin Moore's work in the cystic fibrosis community began when her son was born in 2010. Her initial involvement was in fundraising and then she began working at the State Advocacy Chair for the Ohio Chapter of the Cystic Fibrosis Foundation. In 2012, Erin started working with Cincinnati Children's Hospital in their Pulmonary Department on quality improvement work, bringing all stakeholders to the table in designing systems and tools to better meet the needs of patients, clinicians and researchers to improve health and care in the cystic fibrosis community. Erin is a member of the Committee for Patient Engagement at the Cystic Fibrosis Foundation and works on the Committee for Patient & Clinician Engagement on the New York CDRN. She also leads the patient engagement work for the development of a Collaborative Chronic Care Network (C3N) for Cystic Fibrosis. 

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