The best thing the CF Foundation is doing that you've probably never heard of...


If you are in the CF community and haven't heard of it yet, you will soon enough.  It's making it's ripples and those ripples are mighty.

It's called the CF Learning Network (CFLN).


I just returned from our most recent CF Learning Network Community Conference in Minnesota this past weekend, which was really fantastic, and I thought it might be a good time to share about the CFLN so others know what great things are going on in our community.

The CF Learning Network is a network of CF Care Centers, patients and family members and quality improvement experts working together to improve the way we do CF care.  The CFLN has been a 3 year pilot, funded by the CF Foundation, to find better and faster ways of improving health outcomes for those with CF.

The CF Learning Network is one of 9 networks run by the Anderson Center at Cincinnati Children's Hospital and was brought to the attention of the CF Foundation by my friend and fellow CF mom, Erin Moore.  Erin saw other disease communities making impressive progress and wanted those with CF to have the same benefit.  Fortunately, the CF Foundation agreed.

The goal of the CF Learning Network is to learn together to find ways to improve CF.  If one CF Care Center has better data - such as, if someone knows how to improve lung health well,  the work of the Network is to help that Care Center identify what specific things they are doing in order that other CF Care Centers can replicate their process and improve lung health well too.  It's not about finding which CF Care Center is best (using data for judgment)...but it's about finding ways so that everyone can do it best (using data for learning).  If one of us improves the way we do CF care, we all should improve the way we do CF care.

As my friend Erin often says, "improved CF Care shouldn't happen by chance."  Improved CF care should happen systematically.  That is what the CF Learning Network is trying to do - systematically replicate good practices to improve CF Care faster.  This is done by using specific tools called, "quality improvement skills."  These quality improvement (QI) skills can easily be learned and used by both clinicians and patients/caregivers to learn, replicate and improve the way we do things.

In addition to the use of quality improvement skills to make good CF Care replicable, another important focus of the CF Learning Network is to improve "co-production."  Co-production is a buzz word that refers to patients/family members working together with clinicians to improve care.



Every team within the CFLN has been asked to have at least one Patient and Family Partner on their team - every CF Care Center that participates in the CFLN must work with one person with CF or a family member to work alongside their Quality Improvement (QI) team to make decisions.  My own role in the Network is to both support our Patient and Family Partners in their unique positions and to learn how teams can improve that partnering experience for everyone involved.

The CF Learning Network is working hard to improve the asymmetry of the patient/clinician relationship, not just when co-producing on a Care Center-level but also on an individual co-production level when caring for a patient in the exam room.

For so long, health care has been paternalistic. Doctors/clinicians were once thought of as the all-knowing "experts" who "give health" to patients/family members.  But, times have changed.  Now, health care is patient-centered.  Thanks to the internet, patients and caregivers have access to more information than ever before.  And now, clinicians are become more and more aware that there is no one more engaged in their own health than the patients/family members.

So, the CF Learning Network is capitalizing on this new way of respecting each other and working together. No longer are patients/family members and clinicians working on two opposite sides of the health care system, we are one.  We are on one team - two experts (clinicians, the experts of CF and patients/caregivers, the experts of their own experiences) with two separate sets of skills and knowledge sets - working together for the same goal.

I have been involved since the early design phases and have watched the CF Learning Network grow from a small group of patients/family members and clinicians to almost 30 Care Centers involved in the work.

Why is it important for the CF community to know about the CFLN?  Because it's a game changer.  It is the hope of the Network that as more people participate in a new way of doing CF care, our ability to improve the lives of those with CF will only get easier and better.  Excellent medicines for CF are coming.  But until then and even after, we've got to figure out better way to manage this disease and it's symptoms in whatever form it continues to exist.

CF Moms Pam, Erin and me - we've been working on this Network stuff for a very long time!

This past weekend was our 3rd CFLN Community Conference.  We spent 3 days listening to presentations, learning what others are doing well and discussing ways to improve together what we are already doing.  There are common measures/goals the entire CF Learning Network has decided to focus on and everything that we do within the Network is to improve those particular measures/goals.

Things we often talk about within the CF Learning Network are the burden of care for CF, the quality of life of those with CF (and their families), the new challenges that come with growing life expectancies and new medications coming on the market.  We've dawned a new day in CF care and I am grateful to be a part of a new way of addressing those changes.

If you'd like to know if you're CF Care Center is participating, click here: https://www.cflearningnetwork.org/partners/.  If your CF Care Center doesn't yet participate, let them know you would like them to do so in the future when the Network opens up participation again. 

The CF Learning Network has historically been called the "CF Care Model of the Future." But I am so grateful so say the future is here.

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