LOOP Blog

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.

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.

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.

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!

Christian is co-chair of the Patient Advisory Council and a young black man living with Crohn's disease. He delivered a powerful #IgniteTalk at our Fall 2020 Live Online Community Conference. Read a written version of Christian’s Ignite Talk below:

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!

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.

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.

Hi! My name is Mary and I am 19 years old. I am currently in nursing school. I was diagnosed with Crohn's in 2018. One interesting thing about me is that I have 3 nephews and a niece!

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.