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Engaging our IBD Community in the Time of COVID-19

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.

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It feels like we've really come full circle

Something that I don’t think a lot of people know is that I recruited Catalina Berenblum (Cat) to join the Patient Advisory Council (PAC), years ago. And now that she’s on-boarded me as the PAC's new Co-Chair, it feels like we’ve really come full circle. If I had known then, what I know now, it would have been an interesting sight to see: a high school freshman leading an orientation call to onboard a future PAC Co-Chair and eventual med student. Obviously, I didn’t know that Cat would become either of those things when I first picked up the phone, but I did expect great things from her right away. From our first conversation, I was sure Cat was going to do something amazing: she became an instant role model to me. That awe I felt was well-founded.

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Grateful to be "better together" with all of you!

Fellow Improvers,

As we enter the month of November, a month traditionally reserved for family gatherings and gratitude, I am reflecting on the start of my ImproveCareNow journey. Five months into this role, there are days I feel like I have been a part of our community forever and days when I feel like I will never learn enough about the network’s history and inner workings. What remains constant, is my commitment to and excitement about the work we are doing together and the passion with which we do it.

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Learning Together: Resuming In-Person IBD Care in 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.

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Crohn’s made it hard to participate in simple things

My name is Robbie. I’m 18 and a college student. I was 15 when diagnosed with Crohn's disease; luckily I am in remission now. An interesting fact that people don't know about me is that I captained my school's Trivia team and we went on TV for competitions!

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It's OK for IBD to take up space in my life

My name is Shira and I'm currently a junior in high school. I was diagnosed with ulcerative colitis in the fall of 2018 but I am being reevaluated for Crohn's disease at the moment. Something interesting about me is that my mom and a few other family members of mine also have IBD!

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With IBD, I’ve gained a lot of empathy and perspective and learned a lot about privilege

My name is Seth. I am 17 years old and a rising high school senior.  I was diagnosed with Crohn’s disease in sixth grade. I had a relatively typical path to my diagnosis. After a few years of worsening symptoms (stomach pain, constipation, and vomiting), I went into the hospital, where I had a gastric emptying scan and upper endoscopy, and then labs, a CT Enterography, and finally a colonoscopy. After a few weeks on Prednisone, I started IV Remicade, which I have been on ever since. Outside of Crohn’s, I play trombone and tennis. I’m also very involved in politics, and I was recently an intern for two congressional candidates in Ohio.

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Fall 2020 Live Online Community Conference: 2020 Vision - Better Together

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.

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