ImproveCareNow (ICN) believes that when patients and caregivers are true partners in the design and delivery of their IBD care, we can achieve even better outcomes. One way our learning health network fosters this commitment to partnering with our pediatric IBD families is through our Community Conference scholarship program. Scholarships allow patients and/or caregivers to attend our in-person meetings at no cost to them.

We are hosting our Fall 2023 Virtual Community Conference as a way for us to quickly connect with each other, share information and updates, and learn together. This event is online, and is free & open to all who want to attend. We are keeping it brief (90 minutes), conveniently timed (6:30-8pm ET/3:30-5pm PT) and flexible - making it easy for you to drop in for some or all of our sessions. Our content is intentionally focused toward patients and parents/caregivers living with IBD. So, please join us (and invite someone to come along, too) for #ICNVCC on December 6 from 6:30-8pm ET/3:30-5pm PT. 

Thank you for following our story! Since our last blog, Ella (who is now 15!) and I (Emily) have completed our planned iVHOODIE donation to Yale Children’s Hospital through the generous ImproveCareNow Innovation Fund grant we received in 2019. When we set out to create a sweatshirt that was comfortable and provided IV access to both arms for people receiving infusions, during the height of a global pandemic, we could barely imagine producing a successful prototype let alone delivering 55 iVHOODIES - but here we are! With support from ICN and Yale we have accomplished our goal! We are forever grateful to ICN for helping us to achieve this and kickstart the future of iVHOODIES! 

Let’s all stop to take notice of one of the truly wonderful people around us: Jill Horan. The following reflection was written by incoming parent co-leaders, Heidi and Ildiko, as a celebration of the dedication, creativity, passion and kindness that Jill has brought to her careful tending of the ImproveCareNow Parent Working Group (which has announced a new name, by the way). 

Lifestyle and IBD is a new web-based toolkit that the Patient Advisory Council (PAC) began working on in early 2020. As COVID-19 impacted the lives of many across the country and the world, discussions about how IBD impacts how patients live became especially important to members of the PAC and the greater IBD community. Seeing a need, we decided to co-produce a resource - for patients, by patients - that could help others by sharing direct patient experiences, patient-developed information, resource links, and professional information and insights.

I was a reluctant participant - I was perfectly content to let others lead the way. It wasn’t that I didn’t care, I just didn’t think I had anything of significant value that I could share. That’s not false modesty, I was literally fumbling through trying to understand what it meant to have two kids with a chronic disease that had no cure. That was until I began to partner with my local IBD care center and the larger ImproveCareNow community. 

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.

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.

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!