LOOP Blog

Several teams have been meeting regularly as a part of the ImproveCareNow (ICN) Engagement Campaign, to learn about and test tools and ideas to increase parent and patient engagement at their centers. These were all teams that were struggling to find parent partners who wanted to be involved just one year ago. During their most recent check-in call, the group ended up having a vibrant discussion where they shared successes, big and small, and learned from each other how to continue to increase engagement.

Dear Friends,

ImproveCareNow has had enormous success since it began 10 years ago. Together we have increased remission rates for thousands of children and youth with IBD, transformed how care is being provided, enlightened and excited clinicians and other care providers, and engaged patients and parents in a common mission and work.

"Remission." – the word many living with a chronic illness hope to hear one day. Remission is such a wonderful time of less symptoms and less doctors, but as many of us know, remission doesn't always last forever.

Since being diagnosed with Crohn's disease eight years ago I have only been in remission once, for about a year and a half. It was like coming up for a breath of fresh air. I was being drowned by Crohn's. And while a year and a half totally seems like a long time, it really wasn't. In nearly the blink of an eye, I fell out of remission and began fighting the most brutal flare I have ever known.

In 2012 I wrote It’s OK to say it sucks! I was rereading that post and thinking that even though I’m older, I’m not necessarily any wiser. Here’s what I mean.

Let's give a warm welcome to - and get to know - five new members of the Patient Advisory Council (PAC). Nicki, Rebecca, Becky, Sarah and Abigail 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 over 27,000 patients with IBD across the ImproveCareNow Network and are committed to collaborating and continuously improving outcomes. Let's meet them.

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!