LOOP Blog

This fall will mark the 6^th year that the Children’s Hospital of The King’s Daughters (CHKD) in Norfolk, VA has been a member of the ImproveCareNow (ICN) Network. Looking back, our involvement in ICN has been “game changing” for the Gastroenterology division in multiple ways. Not only has it improved the care we deliver to patients with Inflammatory Bowel Disease (IBD), it has changed how we approach everything.

Let's give a warm welcome to - and get to know - six incredible new PAC members & patient advocates. Christian, Emma, Hindy, Julia, Natalie & Marisa are imPACting the lives of kids with Crohn's disease and ulcerative colitis, by raising awareness about the realities of life with Inflammatory Bowel Disease (IBD) and building connections and tools to support each other and all young patients with IBD. They are also using their voices and experiences to actively represent 26,000 patients with IBD across the ImproveCareNow Network and are committed to collaborating and continuously improving outcomes. Let's meet them.

Perianal fistulas are a common complication of Crohn’s disease in children. At Digestive Diseases Week (DDW) 2016 Dr. Jeremy Adler (@jeremyadlermd) presented research investigating whether low ultraviolet light (UV) exposure is associated with risk of perianal disease in pediatric patients with Crohn’s disease. This research builds on Dr. Adler’s investigation of instances of perianal disease accepted for publication in J Pediatr Gastroenterol Nutr 2016 (in press).

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.

When someone in the healthcare world says she is a doctor, a nurse or medical assistant, her role is immediately understood. We have an ingrained understanding of what these roles encompass. When I tell others what I do, I’m usually greeted with looks of confusion.

ImproveCareNow Community Conferences happen twice a year. Together we work on developing and spreading quality improvement (QI) and research skills and approaches; fueling our Network's use of data to drive and evaluate QI efforts; and developing partnerships that will lead to improved care processes and outcomes in pediatric IBD.

In just two days we will welcome over 300 patients, parents, clinicians, researchers, improvers, collaborators, and supporters to the Fall 2016 Community Conference in Chicago, IL and we hope you’ll join us too. Here’s how:

Jeff Savarino and the team at MassGeneral Hospital for Children (MGHfC) are improving the clinical remission rate for kids with Crohn's disease and ulcerative colitis (also known as Inflammatory Bowel Disease or IBD).

There are so many similarities to travel and journeys in health care improvement. As an improver and innovator, as well as an avid traveler, it’s one of the appeals of this work. I love the big ideas—thinking about new routes to take together, throwing caution to the wind at times, and coming up with new approaches to reaching the destination. But I also understand the importance of a rigorous, time-tested QI process—a road-map if you will—to ground these adventures. So I wholeheartedly embrace the use of measurable goals, especially the 90-day variety. 90-day goals are the way that ImproveCareNow center teams shape and quantify their improvement ambitions—they help them set the course, assess whether they are on the right path, and finally, whether they have arrived in the right place.

I spent many years thinking I was the only kid with Crohn’s Disease in my area.