Update on Progress

By: Erin Moore

On October 9-10 we held our inaugural CF Learning Network Community Conference in Bethesda, MD and we are proud to say it was a huge success! Thirteen programs are part of the pilot CF Learning Network, and almost all teams include a parent or patient partner joining them in this work. The goal of this meeting was to learn core quality improvement methodology and the key clinical content that is the focus of the Network’s work as we think about ways to transform healthcare and health outcomes across the CF Community. 

Following an overview of the model for improvement, we spent some time getting to know one another to enhance our appreciation of what we are each bringing to this work. Self-described “super-powers” of our teams included things like strong clinical knowledge of cystic fibrosis, organizational skills, QI expertise, connectivity, perseverance, passion and enthusiasm - all characteristics that will certainly be an asset to our work. 

The energy in the room grew as we discussed what we will be measuring and how we will be reporting our data, an overview of the measures for the pilot CF Learning Network can be found in our July newsletter. Teams were able to see their own data and started to create Plan-Do-Study-Act (PDSA) cycles for what they would test to enhance data collection at their center. We launched our CF Exchange, a place where we will share what we learn through our work so that others can learn with us, enabling people and information to intersect more seamlessly in this all-teach, all-learn network. You can sign up for an account by following the link above and clicking “Sign up” on the home page.

We wrapped up our first day with activities to help enhance the understanding of quality improvement and co-production and their value in our work. First, with an exercise involving Mr. Potato Head, we tried to find a way to improve the time it took to assemble him without sacrificing quality. Then, in an exercise with Lego designed to show the importance of transparency, trust and empathy to enhance communication and create partnership to allow for true co-production in healthcare. 

We started Day 2 with a discussion on building reliable chronic care processes and productive visits, and again spent time working as teams to map out current processes and plan PDSAs to test improvement ideas. We set both 1 year and 90 day goals as teams and will work as a network to lay out our path forward.  We have a lot of work ahead of us, but the energy that came from the time we spent together dreaming about what a better future looks like will be the fuel that we need to forge ahead. 

For those who were unable to attend, you can access and share the inspiration and content from our time together:

All presentations and handouts can be found on the CF Exchange.

Powerful Ignite talks by Jim Murphy & Pam Mertz describing the opportunities we have if we can learn how to partner and co-produce care can be viewed on the CF Exchange.

The conversation that took place on Social Media can be found captured on this Storify.

Lastly, Erin Moore has turned her closing words into a powerful blog post