A continuous state of beta: Designing and implementing a learning exchange for chronic care Daniel McLinden Sarah Myers Cincinnati Children’s Hospital Medical Center, Cincinnati, OH Background/conceptual framework The Collaborative Chronic Care Network (C3N) Project works to transform the chronic care system into a network-based learning health system in which all involved – clinicians, patients and families, researchers, and others – can collaborate to improve health and the health care system. The first prototype C3N is the Improve Care Now (ICN) Network for children and adolescents with inflammatory bowel disease (IBD). ICN now has 66 participating care centers in 34 states and England. Key to network-based production is the availability of a platform for pooling knowledge and learning together. The ICN Exchange (ICNExchange.org) is an online solution for exchanging tools, processes, and lessons learned. We describe the development, testing, and ongoing improvement of the ICN Exchange to make it possible for a geographically dispersed community of clinicians, scientists, patients, and parents to pool their knowledge, learn from each other and improve outcomes. The aim of the ICN Exchange is to create a learning resource to enhance what people know about how to implement an effective and reliable care delivery system to treat and manage chronic disease beginning with pediatric inflammatory bowel disease. Methods Three principles guided development. Technology was intertwined with community engagement to help designers and community co-create a suitable technology environment. QI methodology ensured that site features had a clearly defined purpose, were tested, and resulted in improvement. Sharing resources is based on peer production; the generation of content and impetus for sharing resides with the community. Results Rapid prototyping and iterative testing began in late 2012 and resulted in the design of a visual platform, similar to Pinterest. Launched in April 2013, the site provides a user-friendly, visually appealing “home” for resources that address key improvement areas including data, pre-visit planning, population management, and self-management (Figure 1). Recent shared resources include a care center’s parents sharing their extensive resources for parents of newly diagnosed children, process flows for building reliable data entry processes, and a video of young patient self-administering an NG tube for enteral feeding. Since launching the site, multiple

1. A continuous state of beta
Designing and implementing a learning exchange for chronic care
Daniel McLinden, EdD
Senior Director, Learning & Development
Associate Professor, General & Community Pediatrics
Cincinnati Children’s Hospital Medical Center.
Sarah Myers, RN, MPH
Senior Quality Improvement Consultant
James M Anderson Center for Health Systems Excellence
Cincinnati Children’s Hospital Medical Center.
Academy for Healthcare Improvement
May 30, 2014
And the ICN Exchange project team

2. C3N Project: The Setting for Innovation
www.c3nproject.org

3. Transform the health, care and costs for all children and adolescents
with Crohn’s disease and ulcerative colitis by building a sustainable
collaborative chronic care network, enabling patients, families,
clinicians and researchers to work together in a learning health care
system to accelerate innovation, discovery and the application of new
knowledge.
The context

4. Make it possible for a geographically
dispersed community of clinicians,
scientists, patients, and parents to pool
their knowledge and learn from each
other to improve outcomes.
The Challenge

5. “Once you open the
possibility that people are
not only using the web as a
platform … but to pool their
efforts, knowledge, and
resources … the
possibilities for what they
can create are astounding
(Benkler, 2001)."
Create a learning resource that will radically change for
the better what people know about how to implement an
effective and reliable care delivery system to treat and
manage chronic disease beginning with pediatric
inflammatory bowel disease.
Inspirations
Aim

6. There needs to be a
place to exchange
tools, processes,
stories and lessons
learned?
What would that place be like?
Beliefs

7. Physician Sandy Roan.
M.D. Pediatric GI Doctor,
specializing in IBD at a
hospital outpatient clinic
Nurse- Veronica
Mayfield, RN: One of
four nurses at a
Pediatric GI clinic
Uri Sternberg, Age 17:
Diagnosed 8 years ago
with Crohn’s
Healthcare Ecology Model. (2010). Clinical Collaborative Care Network (C3N).
Cooper, A. (2004). The inmates are running the asylum: Why High-Tech Products Drive Us Crazy
and Ho to Restore the Sanity. Indianapolis, IN: SAMS.
Pruitt, John & Adlin, Tamara. The Persona Lifecycle : Keeping People in Mind Throughout Product
Design. Morgan Kaufmann, 2006.
Our Approach: Focus on Design

8. …feel like this
Make this…
Our Approach: Focus on community

9. Planning the design: Inspired by Pinterest,
the popular social media site and
informed by Network users.
Doing iterative tests: Site design and
functionality are adapted and refined.
Studying and acting on what we learn
from site metrics and user feedback:
• Growing use among each professional
group.
• Continual need to re-organize and
optimize content
• Co-production of features and
functionality with the community.
Our Approach: Focus on Improvement Science

10. Our Approach: Focus on evidence

11. http://c3nproject.org/innovations/qi-and-chronic-illness-care-support/improvecarenow-exchange

12. ImproveCareNow Exchange
icnexchange.org
Follow us on twitter: @ICNExchange

13. Where We are Today
• Scaling up to meet the needs of a growing
Network.
• Incorporating or connecting with patient and
parent partners.
• Making sure the best resources are the easiest to
find.

14. If you want
to go fast
go alone.
If you want
to go far
go together.
African Proverb