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.

Awareness of ImproveCareNow is one of the first steps patients and families take on their journey toward becoming more engaged in their own care. Becoming aware is as simple as signing up to join the ICN Community – also known as the "CIRCLE”.

Once signed up for CIRCLE, patients and families receive information and updates from ImproveCareNow, stories from IBD community members, and IBD resources that have been co-produced (many by patients for patients) and are shared with the hope of easing another person’s journey. Being part of CIRCLE is also a great way to connect with opportunities for future involvement, such as getting more involved in improving IBD care locally, or nationally by getting involved in the Patient Advisory Council or Parent Working Group, or volunteering to help with research or present at a Community Conference.

At UVM Children’s, we had previously focused on signing patients and families up for CIRCLE using paper handouts. But we learned pretty quickly, this method did not yield high response rates, it was a drain on coordinator time and it negatively impacted our team’s workflow. A few years later, when we decided to try again, we knew we’d need a more streamlined approach. We decided to test asking patients and families to sign up for CIRCLE by filling out a simple digital form on an iPad while they were in the infusion bay or at clinic visits.

We applied all our basic quality improvement tactics to design our tests and learn from them. We began with a 1-week test just in the infusion bay, followed by a 2-month test in the infusion bay and during any newly-diagnosed patient visits, and finally a 6-month test where we approached all patients and families in the infusion bay, at newly-diagnosed visits, and other scheduled IBD clinic visits. By gradually expanding our project and tracking data and interventions throughout our tests, we were able to review our results, make changes, and adapt the project to fit with our existing clinic workflows. 

What we saw was very exciting! Our tests showed an increase in response rates (patients and families were signing up for CIRCLE!), and a decrease in the amount of time the coordinator spent organizing materials and approaching each family.


As of August 2019, 92% of our center’s families have been approached and asked to sign up for CIRCLE, and 85% of the approached families had at least one member (either patient or parent) complete the CIRCLE signup on our iPad.

Of the newly diagnosed families we have approached, 95% have had at least one member (either patient or parent) complete the CIRCLE signup on our iPad.

Our results suggest that this streamlined approach works and that we can achieve the highest CIRCLE signup rate with newly diagnosed patients and families. One year since the start of our project, we have fully adopted this CIRCLE sign up process into our workflow and are now turning our attention towards approaching 100% of our center’s IBD families.

We only have 9 left!

So how does this lead to further engagement??? Well, the next step is even more exciting!!!

Having the majority of our center’s families signed up for CIRCLE meant that we could take the next step and directly provide them with information about opportunities to participate and contribute at our center. Working with ImproveCareNow, our center’s Parent Advisory Council was able to send an email to those who had signed up for CIRCLE and invite them to our first ever IBD Meet and Greet. Our Parent Advisory Council took ownership of this project and created an exciting event that included our GI Team’s social worker and a yoga instructor. We had over 20 patients and parents attend! This was our event flyer, which was created by one of our patients ⬇

This is just the beginning! We look forward to continuing to bring our local IBD community together so we can learn together, support each other and ultimately help improve the care, health and experiences of many more children with IBD here in Vermont and across the ImproveCareNow Network.


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