Creating the CF Care Model of the Future (for real, y'all!)

For many, many months now (as in enough months to make up years), I've been talking about how we can improve the current system for cystic fibrosis care. I've been testing and trying new things on my own, and dreaming about what CF life and care could and should look like. Here's a collection of blog posts with my thoughts on the topic (in chronological order) that also help to put into context some of what I'm about to tell you about:

C3N - http://66roses.blogspot.com/2012/06/c3n.html

The Good Doctor - http://66roses.blogspot.com/2012/11/the-good-doctor.html

My Pitch for a C3N for CF - http://66roses.blogspot.com/2013/02/my-pitch-for-c3n-for-cf.html

The Difference Between Improving a Process and Creating a New One - http://66roses.blogspot.com/2013/04/the-difference-between-improving.html

A Collaborative Chronic Care Network for CF- http://66roses.blogspot.com/2013/09/a-collaborative-chronic-care-network.html

This is actually happening! Last week, I spent 2 days in Bethesda with 40 other folks - CF parents, patients, clinicians, researchers, industry innovators - all with the same desire: to improve both life and care in the CF community. 

The first step in creating this new system is to deconstruct the current system to better understand the components - whats currently working in CF life and care and what's not. We got (and continue to get) this information from the community - from blogs and Facebook groups and testimonials from the patients and families in the room. Then with all of this knowledge, we imagined what "the perfect system" would look like and collectively came up with our dream list which included things like:

• 100% of patients and families feel that there is research happening relevant to their needs
• Everyone has access to own personal data and a personalized treatment plan that is accessible to whomever they choose to share it with
• There is mutual trust, collaboration and empathy where all patients/ families/ professionals think that their skills and knowledge have contributed to the decisions and actions that matter to them
• No more waiting rooms
• Doing your treatments should be like brushing your teeth. It’s a habit and there is no hassle.  It’s convenient and portable.

Over the next couple of months we will figure out if some of the targets we laid out are the right ones that can lead us to better life balance, health management and care coordination by finding or creating different solutions and tools to see how they might help to achieve some of our "perfect system" goals. There are many good parts about the current model of CF care that either aren't known about or aren't implemented properly, so we are going out into the community to learn more about what works, what doesn't, and what we need to do to create the CF Care Model of the Future. 

My goal of 2015 is to blog more, share more of this work that I find so amazing, and connect with people whose perspectives need to be heard. Twitter is an amazing vehicle for sharing, and the project is using the hashtag #CFBigIdea. Join us!! Another platform that we are using (which I will talk about in more detail in another post) is called Smart Patients.  The recent creation of Learn from Smart Patients creates a feedback look where clinicians can learn from the conversations that patients are having with one another, in a safe and privacy respecting way. The real value in this platform versus something like Facebook is that the conversations aren't happening inside of an echo chamber; we're starting to talk with the people that can collaborate with us to help us overcome the barriers we face [that they don't know we are facing if we only talk about them within a closed group]. Don't get me wrong, there is tremendous value in the empathy and support that comes from a group like CF Mamas. I in no way want any of this to replace that.

I want to talk to you, fellow CF mama warriors and amazing patients and patient advocates. The best way to reach me for questions/comments/concerns is through Twitter, I'm @ekeeleymoore (I'm into learning out loud so that others can reap the benefit - chances are someone else is wondering the same thing you are, and we can all learn something through having that conversation together) or via email at erin(dot)moore(at)cchmc(dot)org.