We are well past the first month of the new year, which has me reflecting on some of the challenges and transitions that ImproveCareNow faced as a network and community over the past year. Twenty-twenty is like no other year that I can remember. And while it presented us with many new obstacles as we struggled together to navigate a global pandemic, it also shone a light on inherent disparities and highlighted some of the opportunities waiting to be addressed in our systems. 

On New Year’s Eve, my family has a tradition of writing our New Year’s resolutions on pieces of paper and then sharing them with each other amidst chuckles and teases. However, last year, we decided to do something a little different. “Let’s not choose a resolution,” we said. “And just go with the flow.” That concept could not have been more fitting or appropriate for 2020.

So far, in 2020, 50 stories have been shared #InTheLOOP. Thirty-four community members have written about IBD from their perspectives as patients, parents, researchers, clinicians, improvers and friends. They have covered topics ranging from COVID-19 and telehealth, to IBD research and innovation projects, to their struggles, triumphs and hopes for the future. 

LOOP continues to make an impact in the IBD community, as a place where people can share their experiences and perspectives, to help others understand the realities of life with Crohn's disease and ulcerative colitis more clearly, and to keep us all #TalkingAboutIBD. Without further ado, here are the stories you read the most in 2020!

As a high-risk graduate student who's been remote since March, I'm no stranger to the COVID isolation fatigue that many of us have been experiencing. It’s been a challenge to work, attend classes, take care of my health, and balance daily life without the usual in-person interactions I’m used to. The days can feel like a blur when we do everything from home - setting boundaries and creating some semblance of ‘normalcy’ has been tricky, to say the least.

A few of the things I’ve noticed help me cope right now:

In these turbulent times, with the ever-changing landscape of COVID-19 unfolding around us, the IBD team at Stanford Children’s Health has continued to prioritize community engagement; making the shift to offering virtual events and interactions that have provided their patients and families with uninterrupted clinical care, reliable sources of IBD-related information, and the ability to stay connected, ask questions and develop valuable coping skills to help navigate this unpredictable time successfully.

Their community engagement work was previously shared during our Fall Live Online Community Conference and will be highlighted again during our December 2 Virtual Community Conference (RSVP to join). Alison Kotzen RN, MSN, C-PNP, wrote the following about her team’s engagement efforts during the time of COVID-19.

Active improvement work recently wrapped up for a sprint Learning Lab focused on COVID-19. This work brought together six ImproveCareNow care centers (Children's Hospital and Medical Center Omaha, Duke Children's Hospital and Health Center, Levine Children's Hospital, MassGeneral Hospital for Children, Nationwide Children's Hospital & University of New Mexico Children's Hospital) to learn together and improve approaches to resuming in-person IBD clinics, safely and effectively, after closing temporarily due to COVID-19.

On Thursday, September 24 & Friday, September 25, ImproveCareNow will host their second LIVE Online Community Conference (LOCC). Sessions begin on September 24 at 12:30 PM ET (11:30 AM CT, 10:30 AM MT, 9:30 AM PT) and continue through 5:00 PM ET when a causal Engagement and Social Hour begins. Sessions resume again on September 25 at 10:30 AM ET and continue throughout the day, with a wrap up scheduled for 4:35 PM ET. 

All are welcome to join us for this interactive, online event where we plan to all teach and all learn about topics including diversity & equity, patient & family engagement, the effects of COVID-19 on health and care, and our path forward with new ICN leadership.

COVID-19 – the illness caused by the novel coronavirus (SARS-CoV-2) – has brought unprecedented challenges for both patients with IBD and their care providers. In this post, members of the Patient Advisory Council share perspectives on accessing telehealth and in-person care in the time of COVID-19, and recommendations for improving together.

We believe these perspectives are important for individuals with IBD to review and consider, because the quality of our care is directly tied to our long-term health and wellbeing. If we possibly have less effective care during a pandemic, it can have downstream effects on our health and our lives.

On Wednesday, May 27, 2020 ImproveCareNow announced the decision to transition their in-person Fall Community Conference to a Live Online event. The decision was made jointly by the ImproveCareNow Directors and the Community Conference Planning Team, in consideration of the continued uncertain circumstances of the COVID-19 pandemic. 

From her home office, Catalina spoke clearly and with great conviction, delivering her narrative directly to…her computer screen. Many of us have become accustomed to hearing Ignite Talks delivered to a packed plenary room at our in-person Community Conferences – and the effect these personal stories have is often palpable. Though it was not the original plan, Cat’s words flowed from her location in North Carolina across hundreds and even thousands of miles, reaching ImproveCareNow community members as they joined our first-ever Live Online Community Conference from their homes and offices. While the distance between was indeed great – Cat’s words drew us in close and (as Ignite Talks tend to do) reignited the passion we all feel for the work of ImproveCareNow - of improving health and care for kids with IBD. And from across the miles, the effect of Cat's words were still palpable:

“Incredible Cat!! Words do not do justice to what you are conveying to all of us - the village of ICN!”

“Inspiring for us all! Makes you want to try even harder!”

“You are incredible Cat!!! Your strength and advocacy is inspiring!!! THANK YOU!!!”

“I'M CRYING”

“You remind us why it is so worth it to keep fighting and working. Thank you!”

“Cat gives me chills.”

*stands up and claps*

“Really beautiful. As a caregiver, I feel your passion and share your sense of purpose. Very well done.”

Experience Cat’s Ignite Talk: