My name is Jeanne Weiland and I’m a Nurse Practitioner and Clinical/QI coordinator at the Cincinnati Children's CF Center. I have been an NP here for nearly a quarter of a decade (getting old!). I started taking care of kids with CF when I was a brand new nurse in 1980 and fell in love! You can imagine how many things have changed over the years. I am always open to considering doing things differently/better. I thought our center was good at improvement and including families in our work and was close to where it needed to be, but I was wrong! When I first heard about the idea of a Collaborative Chronic Care Network (now called the CF Learning Network), well to be quite honest, it made very little sense to me. But I could feel the passion from Michael Seid and Erin Moore and that intrigued me. Each time I heard them talk about this new concept, pieces of it began to make sense to me. Finally…. I got it!! Or at least a lot of it. We can make things better faster and make them more sustainable and meaningful if all of the key partners are working on things together, across CF centers.
Our CF community is fairly small and a lot of learning goes on at individual centers, some shared on Port CF or via list-serves . Most centers have been involved in Leadership and Learning Collaboratives and have gained valuable expertise in improvement work. We also have networked closely with other CF center staff, patients and family members. And some of us are privileged to attend the North American CF Conference to hear about the latest in CF clinical care, research, education and discipline specific activities. What the CF Care Model of the Future can offer is a way for the learning, sharing, collaboration and networking among and between patients, family members, clinicians, researchers and others in the CF community to be happening 24/7/365. We have a lot to learn about how we can work together in a new way, sharing openly and honestly what works well, where we could make improvements, and what we should totally scrap! In an older edition of the newsletter, Pam Mertz wrote about her experience in CF Learning Network Design Meeting: “I felt heard. Isn’t that one of the most important factors of health and well-being? To be heard, so that communication and forward motion that is beneficial to all involved can begin.” We all need to be heard and to listen. When we really begin to understand each other’s perspectives and learn to value each other’s strengths and expertise, we can do amazing things. Mother Teresa said “I can do things you cannot, you can do things I cannot; together we can do great things”. To me – this is what the CF Learning Network means.
One of the most exciting parts of this for me, in addition to all working together is the idea of an Exchange. You will learn more about this at the Community Conference in October. The Exchange will be a platform through which we can virtually share our work, our ideas, our hopes and dreams in a transparent, easily accessible format. It’s like a melding of Pinterest, Port CF and Facebook for CF. So now – we won’t have to wait until the North American CF Conference to learn about a new idea and then hope we can get a copy of it. We can actually have a multi person discussion about an idea – clinicians, patients, family members, and improve it on the spot. How cool! We will be able to post educational videos and materials, how we operationalize care guidelines, QI work, favorite recipes, how to get your boss or teacher to understand the impact of CF, how to drop an NG – whatever you dream of! The Exchange will bring the entire CF community together in a way we’ve never experienced before. I have had a sneak preview of it and, I am VERY excited!
I have no doubt that some of you are still where I was a while back – wondering what this is all going to be. For those attending the Community Conference, I think that once you leave Bethesda in October, you will be very pumped about moving forward to the future of CF Care. I look forward to meeting you all or seeing old friends! And please feel free to reach out to the team if you have any questions or ideas (C3NCF@cchmc.org). I’m happy to hear from you also – Jeanne.firstname.lastname@example.org.