One of my favorite parts of being at the first-ever CF Learning Network Community Conference was getting to experience firsthand co-production between clinicians and people with CF and their families.
As a Community Innovator and mom to Bennett, a 7 year old with cystic fibrosis, I had the pleasure of sitting at a table with a CF Program that included a pediatric pulmonologist, a QI specialist and a CF pharmacist.
In our work together during the Community Conference, I gained greater knowledge of the processes and systems this particular Program has created (or have been given) to help them do their job of caring for kids with CF and their families. I learned about the parts of their systems they felt worked well and the parts they felt didn’t work so well. I learned about the challenges they often run up against - such as mandates from their hospital, time crunches, last-minute patient cancellations, issues with the EMR, etc.
Partnering with them gave me a great respect for what they do each day and helped me to better see the love and care they genuinely feel for their patients.
I don’t think I was the only one who gained a lot of insight and understanding in our work together. They seemed to gain a lot, as well. This was especially true in the lighting up of the face of the doctor I was working with when he began to even better realize how patients and their families could be even more useful in his work. Instead of being hesitant to give patients and families more information, he began championing them as being a great place to share information! In an effort to hear more voices, he and his team decided to add a young adult with CF to their Patient and Family Advisory Council. And, as a way to move their clinic from integration to inclusion, the team resolved to offer their Family Partner more leadership responsibilities in their pre-visit planning process.
The doctor said with excitement, “Why have I never thought about this before?!”. I smiled in delight with him, “Yes! These are easy wins!”
Partnering with people with CF and their families are easy wins because they have so much motivation and time to do so much of the things clinicians want to do but often can’t because they are bogged down by lack of time and competing priorities.
My favorite part of the CF Learning Network Community Conference was getting to experience a cutting edge CF clinical team better recognize the exponential power that comes with fully partnering with people with CF and their families.
Co-producing with clinicians is most rewarding to me, as a parent of a child with CF, because it gives purpose to my pain. If I have to watch my son suffer, then I want to know my own learning experiences aren’t in vain. There is much to be gained from patients/families and clinicians working together. This is why I am most excited to be a part of the CF Learning Network.