In February 2020, just two months after I said Happy Trails to my ICN family, I got a call that my brother was being admitted to the hospital. He had experienced a 30lb weight loss in just two weeks, and reported up to 15 bloody stools per day, fevers, and fatigue. When he told me they suspected he had IBD my jaw about hit the floor. I knew thousands of people with IBD through my years working with ImproveCareNow and their pediatric IBD registry. But until February 2020, IBD had never touched someone I love.

The C.S. Mott pediatric IBD team hosted its first engagement meeting. Our first meeting brought together a group of parents, patients, doctors, nurses and improvement coordinators to learn about and share what goes on behind the scenes in our IBD clinic. We designed it as a safe place to ask questions and provide feedback, meet and mingle with others, and (very importantly) gave parents and patients the opportunity to choose if they want to be involved in any of our efforts.

Patients, parents and doctors – we are all humans and want to know each other as such. This has been a common theme that I have seen emerge from Community Conference pre-work and in conversations I’ve had around engagement. Patients and parents want to connect and view their care providers as real people; they want their care team to know who they are beyond just a diagnosis. The focus is on feeling normal and being connected, and how that is defined differs a bit in each case.

Engagement is one of those things that just seems to come naturally to some people. If you believe in something and are excited about it, how can you not share your enthusiasm with others? That’s all engagement is really; sharing stories, passions and successes, and working together toward a mission.

My name is Cori and this is my story of working with ImproveCareNow (ICN) – engaging many different people in an effort to improve care & health for kids with IBD.