ImproveCareNow Engagement

Engaging Children as Special Populations

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.


The Year We Became a Community

We are writing this at the end of another whirlwind year in ImproveCareNow. Just looking at the basic facts and figures, 2015 was much like every year since 2007—successful, busy, and vibrant:

  • We continued to improve, with a continued steady increase in our Network-wide remission rate culminating in reaching 80% as of November 2015.
  • We continued to grow, welcoming 14 new care centers during the year. We now include a total of 85 centers across the US and UK.
  • We impacted the lives of more patients, with 24,000 children and youth with IBD cared for at ImproveCareNow centers. These children are benefiting from our focus on continuous improvement work and evolving pediatric IBD research portfolio.
  • We stayed connected and communicated openly, on 10 Network-wide webinars, during 30+ Learning Lab webinars, within nearly 10 focused role-specific groups, and by way of our “virtual commons”. The ICN Exchange had 600+ users “sharing seamlessly and stealing shamelessly” in 2015.
  • We continued to test new approaches to improving care and health of all children and youth with IBD, by launching a number (too many to count!) of new initiatives and collaborations, including the COMBINE study, the ImproveCareNow engagement and leadership campaign, and collaborations with CCFA and other external partners.

Project WOW (Wear an Ostomy for the Weekend)

Wear an Ostomy for the Weekend Supplies at ImproveCareNow Community ConferenceProject WOW (Wear an Ostomy for the Weekend) was created to help the ImproveCareNow Community learn more about what patients wearing ostomies go through on a daily basis. The Parent Working Group (PWG) and Patient Advisory Council (PAC) wanted to create a learning opportunity where we could work together. We knew this project would only give a snapshot of what patients go through because participants wouldn't have had surgery and the ostomy wouldn't be functional. But we still believed it would be powerful because participants would be learning from perspective, spending some time "walking in patients' shoes", which is something often times difficult to accomplish and not easily seen.

Notes from the Field - Cori's Story Part 3

The C.S. Mott pediatric IBD team hosted its first engagement meeting. Our first meeting brought together a group of parents, patients, doctors, nurses and improvement coordinators to learn about and share what goes on behind the scenes in our IBD clinic. We designed it as a safe place to ask questions and provide feedback, meet and mingle with others, and (very importantly) gave parents and patients the opportunity to choose if they want to be involved in any of our efforts.

Notes from the Field - Cori's Story Part 2

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.

Notes from the Field - Cori's Story

Cori DavisEngagement 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.



Until we meet again

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.

As We Prepare for the Community Conference

Fall 2015 ImproveCareNow Conference LogoNearly 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:



Here is Wesley's Story...

Wesley before being diagnosed with Crohn's disease 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. 

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Nine patient-designed t-shirt conceptsCheck out these nine amazing designs!


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