LOOP Blog

So, a few weeks ago, at the Spring Community Conference, I ran an experiment (with a little help from my friends). The goal was to get conference-goers to commit to 24 hours of experiencing one – single – lifestyle change that some patients with IBD face when trying to get their guts to “quiet down.”  I invited them (after doing it myself) to replace their daily meals with liquid nutrition, while continuing with business as usual (attending a professional conference, where many were looking forward to a nice meal with their colleagues and friends on Friday evening). Further, I challenged them to spend meal and snack times interacting with others at the conference, who I like to refer to as “eaters.”

Just after the ImproveCareNow Spring Community Conference last month, I wrote about the anxiety and anticipation that can precede such events. As I explained, “what we really want is to have set a scene that will allow all to feel welcome, included, part of the community, free to share their ideas and expertise regardless of role, and that they will leave having felt both delight and full of the “human affections” that are (or should be) the hallmark of a truly collaborative improvement community.”

After the conference, we asked members of the community—from diverse roles and centers—to share their perspectives on how we did. We hope you’ll enjoy their words. I know we all feel the challenge to maintain our momentum and indeed do even better next time and hope you will join us in finding ways to make our next community gathering equally inclusive and participatory – the very best it can be!

One week, two chances to learn and grow together.

Just this past week, two ImproveCareNow centers hosted IBD education events. These events are incredible ways not only to learn with patients and families, but also to raise awareness about their role in a learning health system that aims to improve care for many.

Early in my medical school experience, a classmate and I discovered we had both been navigating the wild waters of med school with our own separate but similar chronic diseases, silently, without realizing the other was paddling and advocating for change right alongside us. You really never outgrow of the need for mentorship and support; one of the many myths of the pediatric-adult care transition.

We teamed up, connected with another classmate with experience and skill of her own, and founded the Disability Awareness Association to raise awareness and advocate for ourselves, our colleagues, and our future patients with disabilities. We asked ourselves a question: How can we spark discussion in our medical education about life with a disability beyond what our textbooks say?

I was invited to a PCORnet talk on Building Trustworthiness in late March 2016 where I was asked to discuss children as a special population. My talk, which I’ve shared below, examines how ImproveCareNow engaged pediatric patients in a way that moved beyond the token role often lamely offered to children, and the powerful ability for patients to be involved in and generate meaningful research based on questions important to us as a cohort.

At the end of the Spring ImproveCareNow Community Conference, I shared this painting, “You Worry about Its Success” by Hollis Sigler:

I have loved this painting since I first saw it, in part because of the feeling of anticipation that it creates. The description of this painting on the Madison Museum of Contemporary Art website says:

“There is a magical air to the night. It is a moment of expectation. Who is the hostess? Who is the guest? Where are they and when will they arrive? The title of the painting is written in delicate script at the top center of the composition. It is the voice of the hostess who is concerned that all will go right. Her worries become ours in this poignant scene of human affections. The preparations are loving, but the darkened house and absence of any human presence veil our anticipations with anxiety. All may not turn out as expected.”

About 12 of us participated in the Cincinnati Children’s enteral nutrition challenge – including physicians, nurses, and medical assistants.

Here is a summary of what we observed:

ImproveCareNow Community Conferences happen twice a year. Together we work on developing and spreading Quality Improvement (QI) and research skills and approaches; fueling our Network’s use of data to drive and evaluate QI efforts; and developing partnerships that will lead to improved care processes and outcomes in pediatric IBD.

As you know, the weeks leading up to an ImproveCareNow Community Conference are a few parts busy, a few parts exhilarating, and a few parts stressful (though luckily the ratio changes by the day). There is a lot to do, but our team has done it many times before and indeed our team has grown exponentially as we’ve come to consider the whole community part of the planning process. It’s hard work, but its work we’re doing together and we all look forward to celebrating together once the big event arrives.

Dating, especially in the early stages, is full of emotion…excitement and nervousness are sure to abound. However, with IBD patients, there’s a bit more hiding beneath the surface that the other person usually does not yet know about. How do you tell your significant other about IBD? How does one explain something so complicated? How do you work it into conversation? When is the right time? One of our new PAC members, Samara, recently started dating and has personal experience to share.