LOOP Blog

Engagement is one of those things that just seems to come naturally to some people. If you believe in something and are excited about it, how can you not share your enthusiasm with others? That’s all engagement is really; sharing stories, passions and successes, and working together toward a mission.

My name is Cori and this is my story of working with ImproveCareNow (ICN) – engaging many different people in an effort to improve care & health for kids with IBD.

About 50 small groups of clinicians/patients/parents brainstorming how to surmount 14 barriers to care #icncc15f

We are just over one week out from the Fall 2015 ImproveCareNow Community Conference (#ICNCC15F). Everyone is getting caught up, re-organized, and starting to set priorities for their improvement work in the coming months.

The days immediately following an ImproveCareNow Community Conference are always a bit of a let-down for me. After a frenzy of collaboration, learning, partnership, and celebration (not to mention the months of hard work leading up to it!), it just stops. There are many reflections and lessons that will be shared by me and others in the coming weeks (in the meantime, peruse the rich content on the #ICNCC15F twitter stream), but my thoughts--and hopes--for the community right now are quite simple as I enjoy a day of catching up and recharging.

Nearly 300 patients, parents, clinicians, researchers, improvers, collaborators, and supporters are preparing to come together to learn, share and collaborate (to outsmart IBD) at the Fall 2015 ImproveCareNow Community Conference! So, I’m stopping by LOOP to share some important things (some might even call them highlights) with you:

Wesley at five years old

Wesley was diagnosed with severe Crohn's disease last October during his fifth grade year; just after his 11th birthday. Though he has always been a happy child, Wesley began showing symptoms of this disease at least two years prior to diagnosis. He struggled with various symptoms, often having to stay home and cancel plans. He was unable to play sports with his friends, and often left places to rush home because he was sick. He was absolutely miserable. 

We speed down the pavement towards Grand Canyon National Park. In a few hours this road will be jammed for miles, but right now it’s empty. The trees stand motionless in our headlights and the air rushes into the car through the open windows and back out into the night. There is a young buck on the side of the road, and his presence only accentuates the stillness of the scenery. We pass the empty ranger station, the closed visitor center, and continue driving to the rim of the canyon. Clouds cover the stars like a nightshade, and only the moon penetrates the veil—it is dark.

ImproveCareNow is being highlighted by the Agency for Healthcare Research and Quality (AHRQ). AHRQ previously provided funding to help create enhancements of the ImproveCareNow registry, including automated population management, pre-visit planning, Quality Improvement performance and data quality reports. The efforts of physicians, improvers, parents and patients are also highlighted.

It’s 3:00am, and we’re at a gas station ninety miles outside of the park. We’ve been up for twenty-two hours, and been on the road for sixteen of them. I pull out of the station and on to the open road. We roll the windows down and open the sunroof. The air hits my arms and my body shivers at the cold. I stick my left hand out the window and open my palm to the night—it keeps me awake.

Check out these nine amazing designs!

The interstate takes us through a Navajo reservation. It’s time to switch drivers, but there are no exits. Daniel slows from eighty and stops us on the wide shoulder next to dark grassland and a wire fence. I pull down the ceiling flap and open the mirror. My eyes are red. Sand from the dunes scratched them up, and the burn of the open windows left me squinting. When I rub them, little tears form at the corners and slide down my cheeks.