The Chronic Care Collaborative Network (C3N) is a collaborative community with a shared purpose, common values, and a flexible set of tools working to improve what is known about how to implement an effective and reliable care delivery system to treat and manage chronic disease. It is an innovation lab for the Improve Care Now (ICN) network, a network of over 50 clinical centers treating children and adolescents with inflammatory Bowel Disease (IBD). Through this collaboration, a multidisciplinary team of researchers, quality improvement experts, clinicians, and others design and test new approaches to improve quality of life and outcomes for those living with pediatric inflammatory bowel disease. Our work focuses on the development, testing and implementation of learning platform that with the aim of creating a learning resource to radically improve what people know about how to implement an effective and reliable care delivery system to treat and manage chronic disease. Relying on “open innovation” principles, our intent was to tap into the tacit knowledge or wisdom of the Improve Care Now community through an online presence that provides a means of sharing, refining, and evaluating tools, process, and programs provided by the community of physicians, nurses, researchers, patients, and parents with expertise to share regarding pediatric inflammatory bowel disease. This collaborative approach to learning and knowledge sharing has been successful in commercial and noncommercial applications. We are testing the potential of this approach to create and disseminate learning resources that will improve the care delivered, the patient and family experience of care, and the outcome for patients. In this session we will share the science supporting our efforts and the results of our work to implement this approach including interaction design for the user experience, designing the taxonomy for organizing knowledge, choosing and developing a technology platform as well as measuring and reporting on what we have learned.

1. When Are Learning Resources Like a T-shirt?
The ImproveCareNow Exchange
Daniel McLinden, EdD
Senior Director, Learning & Development
Assistant Professor, General 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.
2013 Regional Faculty and Educator Development Symposium
September 20, 2013
With the support of the ICN Exchange project team

2. Objectives
• Conceptualize learning interventions that rely on
open innovation.
• Integrate the design and build of web-based learning
resources with the low-tech/high touch aspects of
interaction design and knowledge management.
• Use the techniques of improvement science to
engage the community, conduct small tests of
change, measure improvement and then make
evidence-based decisions.

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

4. “Research needs to go beyond simply describing and analyzing the
barriers to providing better care, and do much better at finding
creative solutions, experimenting to determine what works, and
understanding what it takes to spread and scale new effective care
strategies.” 1
Education needs to do much better at finding creative solutions,
experimenting to determine what works, and understanding what it
takes to spread and scale new strategies for learning.
1 Margolis, P. & Halfon, N. (2009). Innovation Networks: A strategy to
transform primary care. JAMA, 302(13), 1461-1462.
And perhaps…

5. The C3N Project is an innovative lab and proving
ground with three key parts:
1) Social – frequent and easy interactions between
participants, like patients, clinicians, and researchers
2) Technical – information systems, for the multitude
of data; and
3) Scientific – an arena to try and test new ideas.

6. • *Source: http://c3nproject.org
• Hommel, KA; Denson, LA; Crandall, WV; & Mackner, LM (2008). Behavioral Functioning and Treatment Adherence in Pediatric Inflammatory
Bowel Disease; Review and recommendations for practice. Gastroenterology & Hepatology, 4(11), 785-791.
• Mangione-Smith R, DeCristofaro AH, Setodji CM, Keesey J, Klein DJ, Adams JL, Schuster MA, McGlynn EA. (2007). The quality of ambulatory
care delivered to children in the United States. The New England Journal Of Medicine, 357(15), 1515-1523.
• McGlynn EA, Asch SM, Adams J, Keesey J, Hicks J, DeCristofaro A, & Kerr EA (2003). The quality of health care delivered to adults in the
United States. The New England Journal of Medicine, 348(26), 2635-2645.
Challenge Vision
IBD as model for chronic
illness care
Patients are getting 50% of the recommended treatment and only adhere to the
treatment of 50% of the time - the chance for good outcomes is 25%*.
Collaborative Chronic Care Network

7. From To
Innovations

11. ImproveCareNow
ImproveCareNow is an active, open learning health
network that uses collaboration and data to drive
improvements in the care and health of all kids with
Crohn’s disease and ulcerative colitis.
It’s purpose is to 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.

12. The Challenge: How can we make this network feel
connected when they only meet twice a year?

13. © 2013 Cincinnati Children’s Hospital Medical Center
All rights reserved
“Once you open the possibility that people
are not only using the web as a platform to
produce their own individual content, but
also to pool their efforts, knowledge, and
resources … the possibilities for what they
can create are astounding.”*
* Benkler, Y. (2011). The Penguin and the Leviathan:
The triumph of cooperation over self-interest.
New York: Crown Business.

14. Models already exist, for example…

15. Benkler, Y. (2006). The wealth of networks: How social production transforms markets and freedom. New Haven, CT. Yale
University Press.
Benkler, Y. (2011). The penguin and the leviathan: How cooperation triumphs over self-interest. New York. Crown Publishing.
Howe, J. (2008) Crowdsourcing: Why the Power of the Crowd is Driving the Future of Business, Crown, New York.
Page, S. E. (2007) The Difference: How the Power of Diversity Creates Better Groups, Firms, Schools, and Societies, Princeton
University Press, Princeton, NJ.
Surowiecki, J. (2004) The Wisdom of Crowds: Why the Many are Smarter than the Few and How Collective Wisdom Shapes
Business, Economies, Societies, and Nations, Doubleday, New York.
Tapscott, D., & Williams, A. D. (2006). Wikinomics: How mass collaboration changes everything. London: Penguin Books.
Von Hippel, E. (2005). Democratizing innovation. Cambridge, MA. MIT Press.
Wenger, E., White, N., & Smith, J. D. (2009). Digital habitats: Stewarding technology for communities. Portland, OR: CPsquare.
Evidence exists, for example…

16. Create a learning resource to 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
When are learning resources like a t-shirt?
Threadless.com

18. 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
KEY DRIVERSAIM
Community Engagement
Technology Design
Interaction Design
Content Management

19. Interaction Design
* 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.
* http://en.wikipedia.org/wiki/Persona_(user_experience)
**http://en.wikipedia.org/wiki/Scenario_(computing)#Types_of_scenario_in_system_develop
ment
Also see
Pruitt, John & Adlin, Tamara. The Persona Lifecycle : Keeping People in Mind Throughout
Product Design. Morgan Kaufmann, 2006.
• Personas*
o A shared mental model of who will use the technology, how they will use
it and why.
o Focus design on most likely cases, not the edge cases
o Puts a human face on the demographics
• Scenarios**: “…a narrative, which most commonly describes
foreseeable interactions of 'actors' and the technical system….”

20. personas
Healthcare Ecology Model. (2010). Clinical
Collaborative Care Network (C3N).

21. Create scenarios with the personas
Physician persona Sandy Roan. M.D. Pediatric GI Doctor,
specializing in IBD at a hospital outpatient clinic in San Jose.
Nurse persona - Veronica Mayfield, RN: One of four
nurses at a Pediatric GI clinic in San Jose.
Uri Sternberg, Age 17: Diagnosed 8
years ago with Crohn’s

22. Technology Design
* Gloor, P. (2005) Swarm Creativity: Competitive Advantage Through Collaborative Innovation Networks.
Oxford: Oxford University Press. (p. 121).
**Wenger, E. (2004). Knowledge management as a doughnut: Shaping your knowledge strategy
through communities of practice. Ivey Business Journal, 68(3), 1-8.
personal
community
high
high
small
Interactivity
Sharing
Connectivity
low
** Practice: “The body
of knowledge, methods,
tools, stories,
documents, which
members share and
develop together (p. 3).”

23. © 2013 Cincinnati Children’s Hospital Medical Center
All rights reserved
Technology Design
Success factors*
1. Establish swarm creativity and give
up central control
2. Nurture the critical roles of creator,
communicator, and collaborator
3. Establish distributed trust
4. Establish a common code of ethics
5. Establish a small-world structure
of high connectivity, interactivity,
and knowledge sharing
6. Set up a collaborative Web
workspace
7. Know when to change the
organizational structure
Support Structure**
• A few explicit roles
• Resources for nurturing the
community
• Technological infrastructure that
enables members to communicate
regularly and to accumulate
documents.
23
*Gloor, P. (2005) Swarm Creativity: Competitive Advantage Through Collaborative Innovation Networks. Oxford:
Oxford University Press (pp. 182-183).
**Wenger, E. (2004). Knowledge management as a doughnut: Shaping your knowledge strategy through
communities of practice. Ivey Business Journal, 68(3), 1-8.

24. © 2013 Cincinnati Children’s Hospital Medical Center
All rights reserved
Technology Design: Drupal Pinboard
• Pinterest, fastest growing social media site*
• 3rd most popular social networking site in hits/week:
Facebook, Twitter, Pinterest** and gaining on Twitter ***
• More than 12M Pinterest users **
• 15x increase in visits from 9/11 to 9/12 **
• Retaining and engaging users 2-3x as efficiently as
Twitter at similar time in site history **
* Wallace, D. (2012). Pinterestingly Enough: Interesting Pinterest Stats. Search Engine Journal, June 22, 2012.
http://www.searchenginejournal.com/pinterestingly-enough-interesting-pinterest-stats/45328/
** Moth, D. (February 21, 2013). Stats: Who uses Pinterest and why is it important for marketers?
http://econsultancy.com/us/blog/62189-stats-who-uses-pinterest-and-why-is-it-important-for-marketers
*** Ferenstein, G. (February 17, 2013). Fresh Stats on Social Networks: Pinterest Catches Up with Twitter, Digital Divide Shrinks.
http://techcrunch.com/2013/02/17/social-media-statistics-2012/

26. Text search
Care Center Tags
Quick browsing
Content management
Easy to search, easy to browse

27. Community Engagement: SMART aims
– 80% of centers attending the Fall ICN Learning
Session will have pinned one of the pre-work
assignments to the Exchange
– 40% of centers (at least one participant from the
center) comment on/view/download a tool or
document within 6 weeks of the Learning Session

28. Site
Design
Use
Impact
on
Practice
Impact
on
Patients
Is the ICN Exchange
used and is it useful?
Is the ICN Exchange
usable?
Are processes
changing?
Are changes making a
difference?
Evaluation model
Current focus:
Community engagement