CFLN CI

By: Pam Mertz

A place to put the passionate angst into productive processes….that is what this CF Learning Network Community Innovators group is for me!!  As a mother, there is a driving force to do all you can for your child. When faced with a diagnosis of an incurable, life-shortening disease, that driving force is fueled even more so.

The Community Innovators are a team of individual stakeholders that have ideas and desires to improve the lives of those they love, or they themselves as patients, that battle CF every day. Many of us have great ideas, but have long waited for a forum to be able to formally test, prove, and measure these ideas.  This Team is a safe, wide open space to be able to put into the process of testing out a concept, an idea, a new way to be able to think and move collectively toward improvement for all. With continuing education and equipping in the Quality Initiative process, tools are given each month as we gather to improve our methods of testing, to measure the outcomes, and to track what we are learning together.  We do not want to duplicate efforts!! Time is too short for that.

As a mom, this space gives me, personally, a platform to share those things that have worked and been beneficial in raising my son to be a healthy 18 year old that now champions his own care and volunteers to participate in clinical trials.  

As the Community Innovators Team grows, we will also grow the number of QI projects and be able to see the fruit of this labor translate into changes in how CF patients are cared for.  This is our collective goal, and as we all work towards it, we can celebrate the little steps along the way together.