These three words (collaboration, connections, community) come to my mind when I think of ImproveCareNow (ICN). And they represent three reasons I love leading our Family Advisory Council and sharing ICN with the families of Dayton Children’s. These are my people. They understand my life. They, too, know what it’s like to parent a child with IBD.

It is for all of these reasons that I am thrilled to host Virtual Community Conference (VCC) Watch Parties – so we can collaborate, connect and feel like we’re part of a community.

ImproveCareNow Community Engagement Learning Series (CELS) trainings were designed by patients, parents, clinicians, and ImproveCareNow staff to share best practices and new skills. Whether you are just getting started or have an established team, you will get something out of these trainings. Each session presents new skills, and provides a chance to work with others to plan how to implement what you learned at your center. Each CELS training is designed to empower you to connect more patients and parents to your team, to build relationships, develop leaders, and share information that improves lives.

I always get nervous before group meetings. I worry that no one will show up or that the material won’t be helpful. Last Wednesday was no exception. When I walked into a conference room at Cincinnati Children’s Hospital I was nervous but shouldn’t have been. I was greeted by smiles, waves, and pizza.

I felt comfortable, accepted, and ready to learn.

ImproveCareNow Engagement Campaign Director, Chris Keck, has announced that four Community Engagement Learning Series (CELS) trainings will be offered in summer 2018. CELS trainings - designed collaboratively by patients, parents, clinicians and ImproveCareNow staff members - are intended for interested ICN community members and teams as a way to share best practices and introduce new skills in an active learning environment. Summer 2018 sessions will focus on volunteer recruitment, team and relationship building, leadership development and using personal storytelling to explain and make change in health care.

My four-year-old son had recently been diagnosed with Crohn’s disease, and the worst part about the whole thing was the needles! IVs, blood draws, shots, Humira injections, etc. Around the same time as his diagnosis, I attended an ICN Virtual Community Conference and that’s where I heard about Buzzy.

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.

Several teams have been meeting regularly as a part of the ImproveCareNow (ICN) Engagement Campaign, to learn about and test tools and ideas to increase parent and patient engagement at their centers. These were all teams that were struggling to find parent partners who wanted to be involved just one year ago. During their most recent check-in call, the group ended up having a vibrant discussion where they shared successes, big and small, and learned from each other how to continue to increase engagement.

The events of the last few weeks have had me reflecting on some things. And while I in no way have the writing skills of the great Sami and Jennie, I thought I would do my best to capture what I have been thinking about.

But a little bit of background for you all. I have been interning with ImproveCareNow through Cincinnati Children’s this summer and I also just experienced my first hospitalization in over 3 years. Throughout my internship, I was focusing on the motivation that drives people to be involved with a patient-focused group like ImproveCareNow.

About a year ago, I was tasked with leading a small project: to redesign ImproveCareNow’s website. We wanted to redesign the website by enhancing the look and feel, while making it easier to connect our ImproveCareNow community members with resources and information to improve care for kids with IBD. 

One week, two chances to learn and grow together.

Just this past week, two ImproveCareNow centers hosted IBD education events. These events are incredible ways not only to learn with patients and families, but also to raise awareness about their role in a learning health system that aims to improve care for many.