I'm part of several communities. My family, my town, my kids' school and activity communities, and others. And though it's part of my job, I'm also part of the ImproveCareNow community. While l do less and less of the actual teaching at our Community Conferences - as more physicians, nurses, patients, parents and others step in to teach - I still get the joy of welcoming those who come together at these twice yearly events to nurture their relationships and connections. What an honor it was to do that again last week. I wanted to share my talk with you.

This is my 13th ImproveCareNow Community Conference. We say that we all teach, all learn every time. But this time it rings more true than ever. The number of speakers and panelists is amazing. And even if you are not a presenter this weekend, many of you have been teaching us since the last time we were together. If you have been submitting narrative reports, or participating on webinars, or sharing tools on the ICN exchange, you’re teaching. As always too, planning this weekend has been a collaborative effort. This is truly an event by and for the community.


I know Dr. Colletti is going to talk about how well we’re doing with our overall mission of more kids getting into remission but I want to talk for a few minutes about what makes the way we work toward this mission special and especially how that how that will be evident this weekend. Our mission is shared: Over the next two days, you will learn with 12 patients, 46 parents, 87 physicians, 16 advanced practice clinicians, 39 nurses, 61 coordinators, 10 RDs, and 13 psychologists/social workers (up from 8 in the Spring!). You’ll also learn with our visitors and partners. Our mission is expanding: Even though they are the newest members of our community, we are lucky to be able to learn from this group of new ICN Centers: Bronson Children’s Hospital, Children’s Hospital of Richmond at VCU, Children’s Hospital at Lehigh Valley Hospital, UC-Davis Children’s Hospital, and Valley Children’s Hospital. We’re using new tools and approaches in our mission: there is more focus than ever this weekend on optimal psychosocial health and optimal nutritional status as key drivers of remission. And we continue to grow our focus on engagement and research work. At the same time though, we’re still working to shore up and ensure the reliability of our quality improvement foundation.


I’m obviously very, very excited about what we’ll do together this weekend. Many of you know I can be pretty enthusiastic about our work and I guess it’s my job to be the lead ImproveCareNow cheerleader. But I do want to acknowledge as we get started just how hard this mission can be at times. Like so many things in life, in our ICN work there are ups and downs and stops and starts.

Some of us have had a lot of recent success. Maybe you’re Levine Children’s Hospital with a pretty dramatic recent increase in your remission rate. Maybe you’re Alex, finally able to play hockey after being in the hospital with an IV just last month. There are so many times to celebrate.


But maybe you celebrate a success and then it happens...your remission rate declines a bit or a process starts to slip. It’s the nature of our clinical settings—staff turnover, changes in the characteristics of our patient populations, times of upheaval in our workflows, etc. It also can be part of living with chronic illness. So everyone in this room can relate to this, clinicians and patients alike. Indeed, maybe you’re in the hospital getting an infusion days before your first Community Conference like Natalie. Maybe you just could barely get here this time like Bianca or you couldn’t at all because you’re sick like Tyler.

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So as I was thinking about these steps forward and back, I was reminded of how lucky we are to be able to reach across the miles to support one another when we’re not here. Maybe your center has run out of steam a bit and needs new ideas. Maybe you’re a patient on a new treatment and don’t want to feel alone. In our community, it’s not quite as easy as walking over knocking on your neighbor’s door to see if they can help, but we do have tools to keep us close across the miles—to keep us connected to one another.

I showed you this onion image a couple years ago as a way to show the “layers” in this community: centers, learning labs, committees, and the network as a whole. And the treasure hunt of sorts in the top blue box—finding “like-minded people” with the ideas and tools you need across those layers. But it struck me yesterday that now we look a little more like this [sprouting onion] image. With the COMBINE clinical trial, other research projects, and a growing community of active, engaged parents and patients with their own projects, we’re sprouting off in new directions and in doing so finding new niches and new peer groups within them, which makes our tools for connecting even more important.

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As many of you remind us, there are a number of tools to navigate in this quest to stay connected in ImproveCareNow. But isn’t it incredible that we have these choices? Just like we have a choice of platforms for connection in our daily lives. I like to use Facebook like Pam does and I love share about ICN on twitter like Jon does. But even though I hang out with our younger patients sometimes at these conferences, I still have no idea what a Snapchat is. And for me, that’s ok. I use the tools that meet my needs.


So our challenge in this community is to find those ways that work best for us and to use them regularly – to make them part of our daily workflow and lives. If you’re finding them hard to use, ask a friend. Mr. Rogers would say “look for the helpers”; there are more than 300 helpers here right now who might know where you can find what you need. What these tools do is connect us as peers and give us a place both to take (steal shamelessly) knowledge from others but also to give back (share seamlessly)—giving back is key. And to coproduce new tools together like the Patient Advisory Council-created Ostomy Toolkit.


...So maybe you’re John in Oklahoma and you’re trying to figure out which teams are doing well in getting kids back to clinic within 200 day. Where do you look? The QI Key Measures system.


…Maybe you’re Theresa in Florida who moved from one ImproveCareNow center to another and wants to find a good template for QI meetings to get her new team started. Where do you look? The ICN Exchange knowledge commons.


…Maybe you’re Jen Jo and her daughter Jessi who just started her senior year of high school and you want to learn tips for navigating IBD at college. How do you connect with others that have been down that route? Smart Patients.


…Maybe you’re KT  in California and want to know what other large, academic medical centers are doing to spread pre-visit planning to more patients. Where do you look? Your Learning Lab and those teams’ narrative monthly reports.


…And maybe you’re Michele, a psychologist in Missouri who meets a kid with a real spark who wants to get involved with others kids to make systems better. Where do you send them? The CIRCLE community sign up at improvecarenow.org.


…And maybe you’re someone who is completely overwhelmed by all things ImproveCareNow. Where do you look? The new center onboarding manual.


There is a place and a platform for the range of needs that we all have, but the common thread is that they connect us to one another.

So I’m going to wrap up with another mission for the next few days. I mentioned looking for friends earlier. Another thing that makes this community unique is that many of us do feel we’re among friends, and dare I say some feel they are among family.


But we know that friendships take work—we need to strengthen and deepen our ties when we’re together (it’s the reason people have reunions when they live apart) so that our connections over the miles are more sustainable. Maybe to do so we need to get know one another better while we’re here. So first, I invite you to share your perspective, your reality living with or caring for IBD, with someone new. We would like to challenge everyone here to answer at least one question that was posted on the ICN Exchange for patients and clinicians as pre-work this weekend and these will be compiled into a nice summary document to share with the community.


Second, and optional, is being part of a small scale test of connecting with someone new via our test of a “randomized coffee trial" using the instructions on this slide.


Finally, we are sharing on the ICN Exchange a summary of the small group discussions from the Spring Community Conference that outlines patients’ goals of care at different stages of the IBD experience. There are 12 patients here but there are 25,000 patients receiving care in our centers so it’s important to keep a range of goals, like those documented in this summary, top of mind as we relate new ideas learned this weekend to the actual goals and needs of our patients at home.


This final slide is from a talk that Lisa Opipari gave 2 sessions ago and I want to share it again as I end. It’s probably the most important reminder I’ll share. This weekend you are all care improvers regardless of role. So put roles aside, learn from each other, dream together, and get started making things better together. Thank you.





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