ImproveCareNow Research Committee member and pediatric IBD psychologist, Jennie David PhD, recently shared her answers to some questions about the state of IBD research, emerging trends in ICN Research, significant recent discoveries, and the value of being involved for psychosocial professionals.

ImproveCareNow (ICN) believes that when patients and caregivers are true partners in the design and delivery of their IBD care, we can achieve even better outcomes. One way our learning health network fosters this commitment to partnering with our pediatric IBD families is through our Community Conference scholarship program. Scholarships allow patients and/or caregivers to attend our in-person meetings at no cost to them.

ImproveCareNow brings together many different people in a diversity of roles across the spectrum of pediatric IBD care. Everyone contributes to our shared mission to transform the health, care and costs for all children and adolescents with Crohn’s disease and ulcerative colitis (Inflammatory Bowel Disease or IBD) by building a sustainable collaborative chronic care network.

Today, we're highlighting the ICN Social Workers & Psychologists (SWAP) group, which brings together psychosocial professionals (including social workers and psychologists) across the network to ask & answer questions, learn from & support each other, share best practices & resources, and work together to continuously improve awareness of & access to psychosocial whole-person care for pediatric IBD patients and families.

This spring, Teresa (a self-proclaimed dataphile) led a breakout session at our Live Online Community Conference where she and Dr. Howard Baron (ICN physician leader) talked openly about data entry failure at their center with the hope that others could learn from their experience.

The ImproveCareNow Network has been focused on improving outcomes for young patients with Crohn's disease and ulcerative colitis (also called Inflammatory Bowel Disease or IBD) for more than a decade. The success of our shared work is rooted firmly in our foundation of data and healthcare quality improvement (QI) science. In 2022, we piloted a new Introduction to QI (IQI) training course for clinicians at participating ICN centers who were interested in expanding their QI knowledge and practice.

Once or twice a year, ImproveCareNow hosts an online training event called Immersion to welcome new care center staff to our community. Participants leave Immersion with a greater understanding of how ICN makes a difference; how their efforts at their care center matter; and how they can develop relationships and find support within our ICN Community.

In December 2021, our team's ICN Coordinator/Data Analyst - Ashley Kiel - shared her experience as an essential, but non-clinical team member involved in the challenge we undertook to educate our local IBD community about the ImproveCareNow CIRCLE and how patient and family engagement can positively impact overall care and treatment of IBD. Now, I'd like to add my perspective, as a pediatric GI doc, on why engaging with patients and families is so important, how we have been pursuing engagement efforts over the past year, and what others can steal shamelessly from our experience.

My name is Ashley and I am the ImproveCareNow Coordinator/Data Analyst for the IBD Team at Nationwide Children's Hospital. My team was challenged by the Engagement Trailblazers to educate our patient population about ImproveCareNow's CIRCLE and how patient and family engagement can positively impact overall care and treatment of IBD. 

ImproveCareNow Learning Labs are small groups of care centers with key characteristics in common or who are working on similar issues. This structure enables care centers to work more closely together to catalyze improvement and to maintain personal connections as our Network grows. Engagement Trailblazers is a Learning Lab focused on finding ways to connect with all patients and families across ImproveCareNow and to help them access and utilize the IBD resources we create together.

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.

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.