LOOP Blog

If you are like me, there are times you are on pins and needles with your child that has Crohn’s or Ulcerative Colitis; wondering if they will continue to do well or if the next cold that requires antibiotics or a bout with the flu may take you back to square one in your attempts to get IBD under control. It is the unknowns that scare me about dealing with this disease...

I was honored to be invited to talk about my joint experience as a young adult with IBD and medical student at the American Academy of Pediatrics National Conference and Exhibition in San Francisco. Guided by the philosophy of ImproveCareNow (I am a former co-chair of the Patient Advisory Council), I emphasized the necessity of patient and parent partnerships, as well as the value of mentorship and representation of disability in medical education. I invite you to watch my talk:

Dr. Colletti and I had the great honor of being invited to travel to Claremont, California to receive the Drucker Prize on behalf of every person working to support the mission of ImproveCareNow. The ceremony was a small gathering in Peter Drucker’s modest home, which now serves as an archive of his work. I wanted to share my comments from the event.

Yesterday I felt tired. This concerned me.

I’m used to feeling tired at the end of my Remicade cycle, but I had my last infusion four weeks ago. With four more weeks until my next, I should be at my physical peak. 

It could have been the cold weather, or the rain, or my night of restless sleep. It could be the stress of my two exams next week, or the consequence of running around campus from seven in the morning to nine at night. 

The cause of my fatigue could be any of those reasons. Or it could be the flu.

Note: This brief post is not meant to simply state a problem; it is meant to start a dialogue about how we can learn to talk about quality improvement in healthcare in ways that are welcoming and inviting to all. In an upcoming post, I will ask some parent and patient partners to help “flip” the discussion and write about their quality improvement observations in words that resonate with them. Let me know if you want to participate!

This post was inspired in part by a twitter Exchange about the words we use in talking about quality improvement (and healthcare in general) with the ever-thoughtful patient leader David Gilbert. That exchange prompted me to think about the words and concepts we use in quality improvement, and the extent to which they can make quality improvement activities less accessible—and enjoyable—to patients and their families. And we need patients and families to be equal partners—and indeed leaders—in healthcare quality improvement. It’s their system and needs to meet their needs and support outcomes that matter to them. What a bonus it would be if we all had more fun together working on it!

Have you ever been so annoyed by people you just want either to slap them or crawl under a rock and hide from them? It could be because they don’t know when to stop talking, or they constantly complain about such petty things. Sometimes you find yourself wondering how the heck they got this way! I have been mulling this over a lot lately because, no matter how annoying people can be, I also know that each individual was made unique for a specific purpose. Hear me out…

This fall will mark the 6^th year that the Children’s Hospital of The King’s Daughters (CHKD) in Norfolk, VA has been a member of the ImproveCareNow (ICN) Network. Looking back, our involvement in ICN has been “game changing” for the Gastroenterology division in multiple ways. Not only has it improved the care we deliver to patients with Inflammatory Bowel Disease (IBD), it has changed how we approach everything.

Let's give a warm welcome to - and get to know - six incredible new PAC members & patient advocates. Christian, Emma, Hindy, Julia, Natalie & Marisa are imPACting the lives of kids with Crohn's disease and ulcerative colitis, by raising awareness about the realities of life with Inflammatory Bowel Disease (IBD) and building connections and tools to support each other and all young patients with IBD. They are also using their voices and experiences to actively represent 26,000 patients with IBD across the ImproveCareNow Network and are committed to collaborating and continuously improving outcomes. Let's meet them.

Perianal fistulas are a common complication of Crohn’s disease in children. At Digestive Diseases Week (DDW) 2016 Dr. Jeremy Adler (@jeremyadlermd) presented research investigating whether low ultraviolet light (UV) exposure is associated with risk of perianal disease in pediatric patients with Crohn’s disease. This research builds on Dr. Adler’s investigation of instances of perianal disease accepted for publication in J Pediatr Gastroenterol Nutr 2016 (in press).

I recently wrote about the many ways that improvers can connect in learning health communities like ImproveCareNow. One of the most important ways in which we connect is via our online community commons—the  ICN Exchange. This community commons has been designed to make it easier for individuals and groups to: (1) find other like-minded people, (2) find activities they want and tips for doing a better job at them, (3) have shared goals and accountability, (4) and have the right maps and guides for their improvement journey. It’s a place to share tools, knowledge, and ideas. It also has an important role in supporting community building and distributed leadership. We are all on equal footing on the ICN Exchange—clinicians, parents, and patients alike—and we all have a role in building this commons.