Monday, October 10, 2016

A Letter to the CF Learning Network

We all have the unique opportunity to see the world from a different vantage point. I, as the mother of a child with CF, first saw this community as one of fundraisers, patients and families with an endless hope for a cure, working tirelessly to make connections and fund research to cure this disease. The more I got to know these folks, I started to see teachers and fathers and technologists and marketers and musicians and policymakers. I got to know the care team that was helping me to care for my son, and I realized that they were also soccer moms and artists and advocates, quality improvement specialists who weren’t just caring for my son, but caring for my community. I got more involved and started to see through my work and social networks how many different groups were working on similar things – parent & patient groups, the CF Foundation, pharmaceutical companies, the government – yet all unaware of the work of the others, and I started to think about how we might help those people and that information to intersect so that more people could learn together and time could be saved.

And then I would get discouraged or frustrated – there are so many moving parts! How could I get the care center in City A to do what the care center in City B was doing that seemed to be addressing the specific issue they were having? How could I make sure that my son was getting the best, most personalized care for him, not just the best care that his care team knew about? How could I share access to all that I’ve learned so that others could benefit from it as well? I shouldn’t have to stumble upon information on Facebook at the right time to find benefit.

Sometimes we don’t know what we don’t know, but I think it’s safe to assume in 2016 that if you don’t know the answer to something, you can quickly figure out how to find it.

I see information being shared every moment of every day – doctors like Raouf sharing the success of implementation of the chronic care model and the work that he has done as the head of our pulmonary department to achieve this success;  people like Emily Kramer Golingkoff starting her own research foundation with an urgency for progress because the trajectory of the science isn’t fast enough to save her life;  folks like LaCrecia who understand the realities of CF centers of all shapes and sizes and the need for a standardized yet  personalized approach to improvement  after having served as a coach for many years. Everyone has something unique to offer, something complimentary to what the rest of us each bring. People like Jim Murphy with compassion and empathy that partner with families to understand their unique needs and work tirelessly to minimize the impact of the disease on our lives. Adrienne likes to read, cook, crochet, hike and travel the world in addition to the clinical expertise and experience she brings.  Bruce’s leadership role enables him to help different groups both within and beyond the foundation to mingle for improvement and change. Breck is a fundraiser, a storyteller and an advocate, not only sharing what she knows but always eager to learn and connect. And folks like Tracey and Sophia and Sarah help us to stay on track, organizing our work and helping to create a roadmap out of the many pins we drop. Michael says yes. He encourages us to try new things, taking risks, and leads by doing.  I bring and insatiable curiosity, a connection to a strong network of like-minded  folks desperate for change, and a never-ending hope that people like Drew can be well, retaining the autonomy to make decisions in their life according to their own priorities, not according to cystic fibrosis.
People make connections in a network all the time. It’s not something we are advocating for. It is something that happens. I could go on and on about the strengths that we all have, but I suspect that as we part ways and reflect on the time we spent together we will all be well aware of the value of the contribution that each of us is making to this work.

There is a great TED Talk by a woman named Angela Blanchard that talks about how we, as a society, as people wanting to help, are trained to look at the problems - the lacks, gaps, needs, wants - the broken stuff, and how we can’t build on broken. She suggests that perhaps instead of looking at all that people don't have, we should start to look at what they do. I think this has a lot of relevance for this learning health system model we are moving toward. I can give you the example of an ENT appointment a few months ago. When we sat down in the office the nurse said, "So we have Andrew here, a 5yr old male with a history of cystic fibrosis, tracheomalacia, pancreatic insufficiency, more bronchoscopy's than I can count, chronic sinusitis, a bowel resection, ileostomy, and airway abnormalities. His medication list is about 4 pages long but I've gotta go through it so here we go." I interrupted her to say, "There’s a lot right with him, too." She chuckled and we moved on.

What if Angela Blanchard is exactly right and we can't build on broken. What if the answer lies in our ability as a team - patient and provider and researcher and foundation - to share what we have, and build what we can to find what we need. What if we can't see the solution by just looking at the problem?  It is about partnership, but a different kind. A partnership focused on what we each have rather than what we each need.

The TED talk goes on to say “We've all been in situations, as humans, raw and painful and excruciating moments, and it's hard in those moments to think about asking people what they have, talking about their strengths, what they're good at.”  But much like so many of us in this room feel compelled to help, in fact were trained to help, the patients/caregivers, we want to contribute too.  All of our stories matter. We want to tell you what we can do and what we do know as that's the first step on my path to a new story. This gives us all hope, meaning, a sense of belonging.  Think about how we might be able to shift away from the post-traumatic stress of diagnosis or disease progression and toward post traumatic resilience, something that science has proven comes when one feels they are making a meaningful contribution. Think about how that might translate to successful transitions, adherence, sustainability, success. We all have the capacity to imagine a future different from the life we live. The job of those who want to help , those of us in this room today, is to stand together.

I believe that success of our work will be dependent upon this enhanced appreciation of what we each have. I encourage you to listen to one another, like really listen, especially when you don’t agree or you hear something unexpected, for its these moments that we can most learn from. Its something I’ve been working on and its paid off big time.

My wish for the CF Community is that we can work together to figure out how to pull our strengths together to create something better than any of us can create alone, laying the tracks for the greater CF community to see the potential in themselves and contribute to create change.
We’ve had an incredibly impressive group of folks in this room for the past two days, from White House Champions of Change  to esteemed scholars, members of PCORI and the Institute for Healthcare Improvement and people with CF and parents who find the time to step away from the demands of this disease to help. And that’s just whose in this room. When you think about the CF Community more broadly and consider all that they have and all that they do, there is no doubt that we will succeed in our work.  Thanks for being here and for the unique gifts that you bring. Let’s do this!!!

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