LOOP Blog

In December 2021, our team's ICN Coordinator/Data Analyst - Ashley Kiel - shared her experience as an essential, but non-clinical team member involved in the challenge we undertook to educate our local IBD community about the ImproveCareNow CIRCLE and how patient and family engagement can positively impact overall care and treatment of IBD. Now, I'd like to add my perspective, as a pediatric GI doc, on why engaging with patients and families is so important, how we have been pursuing engagement efforts over the past year, and what others can steal shamelessly from our experience.

One of the opportunities that active PAC members have is to work on the creation of PAC toolkits. These resources cover many different topics related to life with IBD, but they all share one important thing in common - they are for patients, by patients. 

❓ What is the best way someone can support you and make you feel cared for ❓

Twenty-twenty-one brought challenges! Looking back on this year, we find there is a lot to be grateful for - not the least of which is this amazing community of improvers working together to improve the lives of thousands of young people living with IBD and their families. We'd like to express our gratitude.

My name is Ashley and I am the ImproveCareNow Coordinator/Data Analyst for the IBD Team at Nationwide Children's Hospital. My team was challenged by the Engagement Trailblazers to educate our patient population about ImproveCareNow's CIRCLE and how patient and family engagement can positively impact overall care and treatment of IBD. 

ImproveCareNow Learning Labs are small groups of care centers with key characteristics in common or who are working on similar issues. This structure enables care centers to work more closely together to catalyze improvement and to maintain personal connections as our Network grows. Engagement Trailblazers is a Learning Lab focused on finding ways to connect with all patients and families across ImproveCareNow and to help them access and utilize the IBD resources we create together.

Invisible illnesses, like Crohn's disease and ulcerative colitis, don't take time off for the holidays. Learning about what your friends and family members who live with IBD may be experiencing is a powerful way to demonstrate your caring and support, and to also include them in holiday plans in ways that work for them.

LOOP is an important venue for our community to keep #TalkingAboutIBD. It’s a place where #StoriesMatter - where they connect us, grow our confidence, validate our experiences, remind us we are not alone, and motivate us to continue improving together.

So far, in 2021, 70 stories have been shared #InTheLOOP. Patients, clinicians, parents, dietitians, researchers, and staff & leaders from across the ICN Community have written about IBD from their unique perspectives. They have covered topics ranging from support and advocacy to the importance of sharing openly and talking about IBD, from research and innovative projects to personal struggles, triumphs and hopes for the future.

Without further ado, here are the stories you read the most in 2021!

Each year, December 1-7 is set aside as Crohn's and Colitis Awareness Week - a time to talk about IBD and raise awareness and understanding of Crohn's disease and ulcerative colitis. 

I've been sharing my experience with foods that I eat as a vegetarian living with ulcerative colitis. Today, I'm writing about my favorite way to eat pasta (hint: it's green). 

Twice a year we host a Virtual Community Conference to connect, grow and learn from our diverse community of improvers. These web-based events are free & open to all who wish to attend. We hold them in the evenings, so community members can drop in when it works for them or if there is a specific session of interest. Our next event is on December 8 from 7-8:30 PM eastern (4-5:30 PM pacific). We hope you will join us!