LOOP Blog

The goal of medical research is to find answers that will improve the lives of patients. ImproveCareNow is committed to ensuring the research we support is answering the questions that matter most and will have the greatest potential to impact our community. During 2015, the ImproveCareNow community identified the most important areas where we should be focusing research. Through the Patient Priorities platform, suggestions were submitted for over 200 pediatric IBD research topics. This list was then refined and condensed to 22 unique potential research topics.

How many times have you heard that Camp Oasis – a camp just for kids with Crohn’s disease and ulcerative colitis – is a special place and experience for kids with IBD? Probably more times than your fingers can count. Even still, deciding to go to camp isn’t always an easy choice to make.

The PAC is working to expand a patient-to-patient mentoring program. They have a lot of momentum right now and PACer Christian Hanson and his task force members wanted to share why mentoring is important to them and how they see it making an impact in the lives of others living with IBD.

ICN Nursing Group brings together nurses from across the ICN Network. These nurses have years of IBD experience and aim to use these knowledge and insights to enhance patient care by identifying best practices in patient education, clinical nursing care and providing professional support to the Network.

When I was first told I had colitis I was only 7 years old. I had really bad cramps and started pooping blood. We went to the doctor and he checked me out. They didn’t really know what was wrong at first and we had to go back to the doctor again until my mom insisted that something was really wrong. They took some blood. After that, they put me in a special room where he put an I.V. in and covered it with what felt like a cast. In 30 minutes I was put on a stretcher and rushed out the door and into an ambulance. Off to a different hospital. I knew it would take a while, so I fell asleep, next thing I knew I was on a hospital bed with my mom. My favorite blanket was with me, but I didn’t know how it got there.

Why do we ask questions?

As a Learning Health System, ImproveCareNow is actively listening and really values the input, ideas and experiences that community members have to share. They actually help us do better. Recently we asked community members to share an enteral nutrition (EEN) experience (if you had one) and we heard back from three people. We were able to share their stories here on LOOP, which led to more discussion, sharing and learning about EEN.

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.