I was delighted to have time to join the ImproveCareNow Live Online Community Conference earlier this month, about 1.5 years after leaving my role as Improvement Director. What a delight to watch this group of improvers rise to the occasion as never before, bringing hundreds of people across the globe together under challenging circumstances, all while understandably mourning the ability to be together in person as planned.

When I’ve sat down to write about ImproveCareNow over the past decade, I’ve had the luxury of time. Time to reflect on our recent data and progress, time to tell the neat stories about patients and parents working together, and time to try and try again to put my finger on just what it is that makes this community so special…what gives it it’s spark. And while I think many in the ImproveCareNow community appreciate what makes it special—and also what can make that hard to describe—I realize those outside looking in can still find it hard to grasp. So, I often find myself thinking about several lines of William Stafford’s poem The Way it Is:

When one thinks about a large international health improvement and research network of 109 care centers, the word “friend” may not immediately come to mind. But recently, as I attended my approximately 18^th ImproveCareNow Community Conference in 11 years, it was this word that kept coming to my mind throughout.

Last Wednesday, I sat down armed with coffee and snacks and dialed in to the 2^nd ever ImproveCareNow Virtual Community Conference—a web-based, narrated “tour” of the ImproveCareNow community. I knew I was settling in for a long time at my desk (it was, after all, a four-hour webinar), but I was excited to be able to host the event. And truly, the lion’s share of the work—people teaching and learning together—was led by a wonderful group of ImproveCareNow Community members including clinicians, patients, parents & researchers. How amazing that sitting at my desk in Wisconsin, I was able to listen to specific stories about how care is being improved TODAY for kids with IBD in North Carolina, Virginia, Ohio, Indiana, and well beyond.

Dear Friends,

It’s fair to say that we’re still a bit speechless thinking about the impact of the presence, participation, and indeed leadership of so many people, including parents, patients, clinicians, researchers and improvers at our Community Conference. Over 300 people took time away from family, work, and day-to-day life, and dove right in. Together we learned, we taught, and most of all, we inspired each other all to keep doing better. Thank you from the bottom of our hearts for being a part of this community and helping us celebrate our first decade!

ImproveCareNow centers work hard to provide excellent care for pediatric patients and their families. The seamless sharing of clinical tools and approaches among participating centers is a vital part of their success. Now, we aim to codesign more tools & materials to share with and support patients and families in their day-to-day lives.

It’s been a busy week in the ImproveCareNow community, and it’s not over yet. As one of the “official” leaders of this community, I’m sitting back for a few minutes and reflecting (as I often do) on how many people from across this community have become contributors and leaders in their own right; collaborating across roles and across the miles.  Not every week looks the same in ImproveCareNow. Some weeks, our momentum slows a bit and centers look inward and focus on their own vital improvement activities. But this is one of those weeks when you see the power of community fluctuate not just day-by-day, but hour-to-hour and down to the moment. In these moments, you realize, you are witnessing a truly incredible burst of collective energy. And nearly all of this work is happening virtually—by phone and online—with participants from across the US and beyond.

Note: This brief post is not meant to simply state a problem; it is meant to start a dialogue about how we can learn to talk about quality improvement in healthcare in ways that are welcoming and inviting to all. In an upcoming post, I will ask some parent and patient partners to help “flip” the discussion and write about their quality improvement observations in words that resonate with them. Let me know if you want to participate!

This post was inspired in part by a twitter Exchange about the words we use in talking about quality improvement (and healthcare in general) with the ever-thoughtful patient leader David Gilbert. That exchange prompted me to think about the words and concepts we use in quality improvement, and the extent to which they can make quality improvement activities less accessible—and enjoyable—to patients and their families. And we need patients and families to be equal partners—and indeed leaders—in healthcare quality improvement. It’s their system and needs to meet their needs and support outcomes that matter to them. What a bonus it would be if we all had more fun together working on it!

I recently wrote about the many ways that improvers can connect in learning health communities like ImproveCareNow. One of the most important ways in which we connect is via our online community commons—the  ICN Exchange. This community commons has been designed to make it easier for individuals and groups to: (1) find other like-minded people, (2) find activities they want and tips for doing a better job at them, (3) have shared goals and accountability, (4) and have the right maps and guides for their improvement journey. It’s a place to share tools, knowledge, and ideas. It also has an important role in supporting community building and distributed leadership. We are all on equal footing on the ICN Exchange—clinicians, parents, and patients alike—and we all have a role in building this commons.

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.