ImproveCareNow Improvement_coordinator


Our Bigger CIRCLE Project

My name is Ian and I’m a clinical research coordinator at the University of Vermont (UVM) Children’s Hospital. I work 20% of the time on ImproveCareNow (ICN), and the rest is spent supporting a variety of other pediatric clinical trials at UVM Children’s. Our pediatric GI team has been participating in ICN since 2007 and we are continuously looking for ways to improve the health and experiences of the kids we care for. Recently, with support from the ICN Engagement team, we volunteered to try and make improvements to our process for getting our patients and families aware of and taking advantage of the benefits of our ImproveCareNow participation. Last August we began testing ways to improve the very first step in this engagement process, Awareness.


What exactly do you do?

When someone in the healthcare world says she is a doctor, a nurse or medical assistant, her role is immediately understood. We have an ingrained understanding of what these roles encompass. When I tell others what I do, I’m usually greeted with looks of confusion.

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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.

 

 


Notes from the Field: Front Desk Staff Key to Patient Partnership

This experience was shared during an ImproveCareNow webinar by Cindy Gessouroun. I enjoyed her story so much, I asked her to share it here on LOOP. It's a simple, yet powerful example of how much we can accomplish together when we involve every person across the spectrum of care. I hope Cindy and Kim's story will be an inspiration, and that others will share their lessons about how best to identify and build relationships with patient and parent improvement partners!




The IBD team at Oklahoma University GI clinic was trying to identify parents to join our team. We asked providers for suggestions. We invited a few parents. We had an education day hoping to identify “interested’ parents at that event…however we continued to be without a parent partner. Kim, our front desk receptionist, attended her first Community Conference (CC) in Spring 2015. At our QI TEAM meeting after the CC she said, “I can find you parents!” She identified and invited 3 parents with whom she had formed a relationship throughout the years and who stood out to her as “potential involved partners”. After her phone calls she notified the research coordinator that ALL 3 parents said YES and showed up at the next meeting. Since then, they have stayed engaged and are slowly becoming partners with our TEAM. She had wonderful insight and her personal invitation must have been a good one!

 

 


Parker's Crohn's Diagnosis - One Step at a Time

Parker going on a zip-line adventure before Crohn's diagnosisParker is an energetic, blonde haired, little boy. Just like many boys his age in Vermont, Parker enjoys skiing, bike rides, grass-stained jeans, and his new puppy Bailey. During the summer of 2014 this perfectly healthy heart-throb of a boy was crippled with abdominal pain, fatigue, and weight loss. By the end of summer all of these horrible symptoms culminated in a diagnosis of Crohn’s disease at the blissfully innocent age of 7. As his family was coming to grips with life with a chronic incurable illness, Parker’s symptoms got worse. He was quickly admitted to the University of Vermont Medical Center and received his first dose of infusion medications to fight Crohn’s.

 

“I don't want this for him, there must be a mistake, Parker is my rock” his Mom, Keri remembers thinking. “As a parent you go through the motions and the emotions of a diagnosis. I think the hardest moment for me as a mom, was being strong in front of him, for him, and the family, and then breaking down when I was alone. I remember one moment, late at night in the hospital walking down the hallway of the children's floor, and I stopped. I could barely walk any further. I had to keep telling myself, one step at a time, whatever it takes to move, feeling so isolated and alone, and from that moment on, that has been my motto. One moment at a time, one day at a time, and one step at a time, to just keep moving forward.”

 

After three long days as an inpatient at the UVM Children’s Hospital, Parker was discharged. He almost literally rode his scooter right out of the hospital. With a huge smile painted on his face, you could almost see the shackles of illness begin to release their grip. The energetic little boy that they knew was coming back to the surface with every giggle that squeaked out of him, and they kept moving forward – one step at a time.

 

As the ICN Improvement Coordinator here in Vermont, I first met Parker just a few weeks after his diagnosis. He was getting an infusion and I had come to talk with his family about ImproveCareNow. Whenever I approach patients and families about ImproveCareNow, my wish is that they will see this Network as a glimmer of hope in what is most likely a very dark place, and ultimately that they will want to get more involved.

 

Through the icy grip of winter, Keri and Parker continued coming to the Children’s Hospital every 8 weeks for infusions. During one of these otherwise uneventful visits, Keri asked about becoming more involved with Parker’s care. Although this question is short in length and easily rolls off the tongue, I feel it is one of the most powerful questions a family can ask. That uneventful visit ultimately lead to one of the most engaging and empowering conversations and relationships that either of us had experienced in a long time. Personally, I don’t think either of us could have ever imagined what was waiting just around the corner. It wasn’t what we were expecting but was exactly what we were hoping for, and certainly something we weren’t going to say no too. This project with Keri has evolved over time and has been a huge learning experience for everyone, but we’re going to keep moving forward – together – one step at a time.

 

I look forward to sharing more with you as our relationship, and indeed our adventure, unfolds.


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