LOOP Blog

What is ImproveCareNow? ImproveCareNow is a Learning Health Network. OK, great. But what does that mean and why is it important? 

Patients, parents and doctors – we are all humans and want to know each other as such. This has been a common theme that I have seen emerge from Community Conference pre-work and in conversations I’ve had around engagement. Patients and parents want to connect and view their care providers as real people; they want their care team to know who they are beyond just a diagnosis. The focus is on feeling normal and being connected, and how that is defined differs a bit in each case.

“A journey of a thousand miles begins with a single step” – Chinese philosopher Laozi, 6^th century BC

With great admiration, I have been witness to the strides that ImproveCareNow (ICN) has been making in our research efforts. As co-chair of the Research Committee, I am able to observe all of the wonderful ideas that the community puts forth for consideration. As with any learning curve, every step is not smooth, and we occasionally stumble and fall. Our colleagues are next to us ready to offer a helping hand though.

The variation in presentation of ulcerative colitis (UC) during childhood has been incompletely characterized. In October, at the NASPGHAN Annual Meeting, Dr. Jeremy Adler (@jeremyadlermd) presented an abstract on behalf of ImproveCareNow, which highlights the characterization of the extent of disease at presentation of UC in a large cohort of pediatric patients using data from the ImproveCareNow pediatric IBD registry (known as “ICN2”).

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.