Saturday, June 30, 2012


Yesterday, I had the opportunity to participate in a Quality Improvement project with the CF clinic. There had been a kick off meeting to this initiative about a month ago and it was decided that both education and technology were of equal importance and that there was an overlap in using technology to educate. The goal is to improve outcomes for CF patients through more targeted education. So for example, the doctors in our clinic have a pre-clinic meeting where they discuss the patients that will be seen in the upcoming week and decide who needs to see them (doc, dietician, RT, etc). The parents felt that it was important to be involved in this meeting, in some capacity, so that the doctors and nurses and whoever else could know in advance of a visit whats been going on with the patient and what the patient and/or parent feel its important to discuss. This could lead to more effective visits. We also talked about how to identify when doctors need to bring up certain topics with patients - everything from checking to make sure their vest is fitting properly and working the way its supposed to, to things like the fact that CF kids aren't supposed to be in hot tubs. There is so much information to be known and there is a fine balance between giving people what they need and bombarding them with information. Enter C3N.

There's already something being developed that is going to change health care for people chronic conditions and its seriously awesome. C3N stands for Collaborative Chronic Care Network. This is how their website describes exactly what it is: 
The Collaborative Chronic Care Network (C3N) Project is an innovation lab, where patients, clinicians and researchers work together as co-designers in a learning, social production system for health that aims to transform the system of chronic illness care. Working with ImproveCareNow, we are creating the first C3N for patients with IBD.  By combining large data registries and making them accessible and interactive, the C3N Project drives action and innovation to create a more reliable and accountable care delivery system for children and their families dealing with chronic gastrointestinal diseases.  And with an open-source framework, this project is developing a means to overcome barriers that involve concerns about intellectual property, data sharing and privacy, and medicolegal1 liability.  The C3N Project is the future of chronic illness care. And it is already in play.

While its being created to help all chronic conditions, it was piloted for Crohn's disease. The meeting I had yesterday at Children's was about bringing it to the CF world. Here is a short video on how it is going to work. Its about 5 minutes long but stick with it because it really explains nicely how the project works. And just to be clear, this is all still in the works.

Isn't that awesome!? Can't you just see the possibility for use in the CF world? One of the things we discussed yesterday was the fact that you don't know what you don't know. Sometimes you don't know what questions to ask or what you want or need to know at different points in caring for your sick child. The C3N project can gather data on what people are doing or are concerned with or are talking about at certain different points and share that knowledge with others. Doctors can target their care plan based on what patients themselves show what is important. 

There has been some press about this project too. Check out these articles if you have time because they are very interesting. Nothing like this has ever been done, but its really different and exciting and might just be exactly what we need. 
The Collaborative Chronic Care Network: Rewriting the patient-doctor script

I think one of the things I like most about this is the ability to improve outcomes for patients with chronic condition simply by streamlining data and information and opening the lines of communication between patients and clinicians. I'm very excited to be working on this project with the CF clinic and and only imagine how this will change the world for people with CF!

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