I don't even know where to start with this post, so much has been going on over the past several months that I haven't had a free moment to write. Well, not totally true. Actually I have been writing but its been for our CF Care Model of the Future Newsletter and for the Eli Lilly Blog as I'm now an ePatient advisor working with them! Crazy story of how that all came to be, and specific thoughts on how I (and others) feel about that will be on hold for another post.
You guys, recruitment has started for our CF Learning Network!!! All the work that we've been doing dreaming and designing and planning has gotten us to the point that we are recruiting CF Centers and patients and families to join us to pilot the system that we've dreamed up to test its ability to improve outcomes. Invitations were sent to about 40 CF Centers who were encouraged to identify patients and families to partner together with them to join this work. I'm half ok with the way that it happened - inviting centers to join and identify patients and families to partner with vs. finding the empowered patients and families (of which there are many) and shining a light on them to care centers to join them in their awesome work. We aren't doing it one way or another, but we are capitalizing on the organizational structure of the CF Care Center Network to test out improvement efforts. The awesome patients and families will hopefully join their care teams to learn together and push them to the outer limits of their comfort zone where change happens. We are supporting QI training for teams in this pilot phase so that we can learn a common language, work on projects together, compare results and quickly identify variation and how we can close the gap to get the best care to everyone, personalized, as quickly as possible. I know it sounds abstract, but now that we will soon have a handful of care centers on board and can start to test out some of the ideas that we've dreamed up, I think we will soon be able to talk about it in more concrete terms and start to engage with people at all different levels of interest so that we, as a CF community, can start to work together different to improve outcomes. And I'm not talking about incremental change, I'm talking transformation. I hope (and believe) that within the next 3-5 years, we won't have such dramatic variation in care from center to center but rather best in class care across all CF centers, regardless of where you live and which care center you go to.
A major component of this work will be partnership between patients & parents and the care team, especially those of us who will be working together closely on quality improvement teams. I had a somewhat failed first try at partnership with our care team, and I'm working to learn what successful partnerships have looked like with other learning networks - how patients and parents are working with care team and in what capacity, what's working and what's not from the perspective of both sides. For example, I know a parent partner on one of the IBD teams who works very closely with the care team on their QI efforts as part of the network, runs the patient and family advisory council, but doesn't get paid. She also serves as the go-between for the families and the care team. I had always envisioned more of a partnership, like one big team, rather than two teams (clinicans and families) working together seamlessly. I'm trying to learn what the parents view as valuable and what they wish was different, and also what the care team thinks about that relationship. I have another friend who worked on the patient and family advisiory council with her care team and was asked to leave when she expressed opposition to some of their work. She's a powerhouse in healthcare improvement, respected by many inside of and outside of the CF world, and can't work with her care team because they wanted a cheerleader, someone to talk about the great work they're doing, and when she challenged them to think bigger they called her negative and asked her to leave. Another parent partnered her non-profit organization that she started, completely independent of any care center, with the National Pediatric Cardiology Quality Improvement Collaborative, the learning network for babies with HLHS, and they have a fabulous relationship. It seems that there will be a variety of ways for folks to partner in this work - some with the care team leading, some with patients leading, some with true partnership and perhaps even some independent work, and I'm really trying to crack that nut of engagement opportunities that exist for all players in our learning health system. Maybe I'll attempt to draw it out on here once I figure it out. Or at least share the ideas I come up with.
Drew has been well. Like really well. Like I haven't talked about him on the blog in 18months because hes not been since in 18months and I don't wanna jinx it. He didn't miss any school this year and hasn't had a PICC since March of 2015 and thats amazing for any number of reasons. He had an annual pediatrician appointment last week and he gained 8lbs this year, compared to the 2lbs he had gained between 2014-2015. Things have just been well, so i'll leave it at that.
We're deep into summering right now - staying up a little later than we normally allow, spending endless hours at the pool, taking lots of mini trips and embracing the lack of a schedule. I'm sure that by mid July I'll be longing for that schedule again, but right now it is still such a welcomed break from all that the school year gave us. We're heading to St. Louis to meet some friends in a few weeks, and then back to PA for the last week of June and first week of July before a family trip to South Carolina at the end of July. I'm not sure how I'll do all the work I committed to prior to the official dawn of summer, but I'm sure I'll figure it out. Up next, that time I went to the White House, episode 3. Stay tuned!