Posted by ImproveCareNow™ on March 19, 2025
ImproveCareNow (ICN) has had enormous success since it began 18 years ago, increasing remission rates for thousands of young people with IBD, transforming how pediatric IBD care is provided, enlightening and exciting clinicians and other care providers, and engaging patients and parents in a shared purpose and work. We are pleased to share our ImproveCareNow calendar year 2024 Annual Update, which includes highlights and achievements from 2024 and plans for our continued work to improve health, care, and costs for young people with IBD in 2025 and beyond.
In 2024 ImproveCareNow launched the new FY 2025-2028 Strategic Plan, which includes goals in the following domains: Outcomes; Health Equity; Sustainability & Leadership; Engagement & Community Building; Technology; and introducing a new domain: Research & Innovation. This strategic plan was developed using a new process to gather more comprehensive feedback and participation from every stakeholder group in the network.
Outcomes
- Reported a shift in Prednisone-Free Remission from 80.3 % to 81.5%. This improvement means 248 additional ICN patients have achieved prednisone-free clinical remission.
- Continued to implement our Model Care Guidelines based on clinical processes and current approaches to care, including newly adopted guidelines for depression screening.
- Completed and shared the 2023 Annual Data Report which aims to present a brief summary of patient data captured in the ICN Outcomes Registry and represents the breadth of knowledge gathered by the network so that new learnings are possible.
-
Supported three Learning Labs in our Pathway to Mastery quality improvement framework as they focused on increasing reliability of their core processes.
- Foundations Learning Lab onboarded one new center and welcomed back to the lab three others. Together, we focused on processes to identify and register centers' IBD Population in the Outcomes Registry and to develop their team's roles and responsibilities.
- Pre-Visit Planning and Population Management continued work to improve and standardize Pre-Visit Planning and Population Management processes at care centers across the network by providing opportunities for center teams to highlight their best practices and innovative tools with one another, and transparently and collaboratively overcome barriers to improve care.
- Clinical Standardization / Personalized Care continued to focus on improving the percentage of patients receiving therapeutic drug monitoring with a focus on those that are induced and complete at least 16 weeks of anti-TNF therapy. Participating centers refined process reliability in implementing the treat-to-target algorithms, incorporating anti-TNF level checks into Population Management and Pre-Visit Planning meetings and regularly reviewing performance data with the team.
- Within the Pathway to Mastery framework, the network created a Responsive Evolution annual review to better align care centers to the learning lab that will best support their success in the network. This review also introduced new requirements for advancement along the Pathways, including requiring >75% of patients have a visit in the last 200 days, complete demographic data capture, and reporting the percentage of patients consented for research. This year’s responsive evolution review enabled 7 care centers to move to the Learning Lab within the Pathway to Mastery that best meets their needs, allowing them to strengthen their core processes to manage their IBD populations and advance their delivery of care.
- Successfully launched the fourth cohort of the Introduction to Quality Improvement (IQI) series which teaches participants to apply the Model for Improvement tools and methodology in a QI project specific to their center and its needs. Participants from previous IQI cohorts went on to share their project specific learnings with the community through presentations at the ICN Community Conference, in Learning Labs or to targeted audiences in committees and workgroups.
- Supported the improvement work of the Autoimmune Liver Disease Network for Kids (A-LiNK). Now in its fourth year, A-LiNK has 13 participating centers and counting. Sites are capturing their data in their REDCAP registry, leading to an improved understanding of the current state of care for patients with Auto Immune Liver Disease (AILD) and identification of gaps and opportunities to improve. In collaboration with patients and caregivers, the first draft of the AILD Model Care Guidelines have been developed and will be used to guide a standard approach to patient care in the A-LiNK community.
- Celebrated in-person with our community of improvers during our Fall Community Conference in Baltimore, Maryland. More than 200 improvers across 75 centers came together to share learnings and collaborate with each other in plenary and community proposed breakout sessions that aligned with ICN's strategic aims.
- Continued to offer virtual events, including a Live Online Community Conference, topic specific Community Wide Webinars, and Immersion for new ICN care center staff. In total, we have reached more than 1500 attendees virtually, making learnings and the ICN culture more accessible to every member of the ICN Community.
- The Registered Dietitian workgroup completed a review of their Nutrition Manual, which is a comprehensive guide with nutrition tips & best practices shared with other Registered Dietitians on the ICN Hub. They also wrote for LOOP blog quarterly, sharing tips and insights with the ICN community.
- The Social Workers and Psychologists workgroup continued to work closely with the Parent/Family Advisory Council on a caregiving resource to be released in 2025. They also worked on leading research committee approved projects and publishing quality improvement and research manuscripts.
Health Equity
- The Health Equity Committee onboarded new leadership and prioritized projects for work in 2025 including a focus on toolkit translations.
- Continued to collaborate with internal data experts and organized a quality improvement project focused on increasing completeness of demographic data entry through targeted center reach outs and reports of missing data. Missing demographic data was reduced by more than 4% in 2024.
- The Social Factors with Racial Disparities in Pediatric IBD study (SaFR Kids) presented a poster at Digestive Disease Week in 2024. ICN facilitated a community wide webinar highlighting study findings and the opportunity for future research utilizing the data collected during the study. Publication work is underway to share findings gathered from the 950 submitted surveys.
Sustainability & Leadership
- Sustained active participation across our network of 100+ care centers and welcomed two new centers. ICN serves more than 29,500 patients and their families, with over 1,900 healthcare professionals, including 960 pediatric gastroenterologists.
- The Board of Directors kicked off their term in July, sharing new goals for a board-level data committee, succession planning, and financial stability.
- Celebrated ImproveCareNow Care Centers ranked in the U.S. News & World Report Best Children’s Hospitals of 2024-2025 with 9 out of 10 Honor Roll hospitals, and 42 out of 50 best hospitals for Gastroenterology & GI Surgery, belonging to the network.
Engagement & Community Building
- Partnered with Cincinnati Children’s Hospital and the David R. Clare and Margaret C Clare Foundation to further study the link between patient engagement and improved outcomes. This partnership will support the collection of Patient Reported Outcomes in the Outcomes Registry.
- Supported the Patient Advisory Council (PAC) as they planned and contributed to 12 sessions at ImproveCareNow conferences and hosted the second annual PAC/Physician Mocktail Hour at the fall conference; shared patient perspectives via 10 LOOP blog posts, and continued to work on several resources, including the “What I Wish You Knew About Feeding Tubes” one-pager, some fantastic “Let's Talk IBD +…” tipsheets, and others that will be available to the ICN community soon. Several PAC and former PAC members also contributed to leadership on the ICN Board of Directors, ICN Research Committee, ICN Health Equity Committee, and the CS/PC Learning Lab. Their expertise was central to ICN’s successful work in 2024!
- Supported the Parent/Family Advisory Council (PFAC) as they continued to grow, connecting with 82 new parents/caregivers and adding two new parents to their leadership team in the areas of diet/nutrition and multi-patient households. The PFAC hosted monthly calls that included guest speakers on multidisciplinary care and best practices for working with insurance companies. They also continued to work with the Social Workers & Psychologists workgroup on the creation of a new resource which they presented at the Fall Community Conference. PFAC members presented on ICN’s Open House call and ICN’s Live Online Community Conference.
- Hosted our first ImproveCareNow Open House, formally known as the Virtual Community Conference. This event is co-designed with the PAC and PFAC members and aims to share educational content previously shared at Community Conferences with more patients & parent/caregivers, while offering more opportunities for them to learn how they can get involved in ICN’s mission.
Technology
- Increased the number of care centers participating in Electronic Data Transfer to 62, reducing manual data capture burden across centers.
- Completed an upgrade to the ICN Hub, ICN’s communication and collaboration platform, to encourage and enable the network and various workgroups to contribute ideas, share resources and ask questions with the ImproveCareNow community.
- Released the Data Assessment Dashboard, a tool that helps care center teams better understand their data quality by highlighting areas of focus for key data metrics at a glance.
- Implemented changes in Outcomes Registry from the updated Case Report Form. A major improvement project will continue in 2025 to add efficiencies to lab & medication data entry.
Research & Innovation
- Received funding from The Leona M. and Harry B. Helmsley Charitable Trust to study best practices for dissemination and implementation using the COMBINE study results. Study work kicked off by assessing the current baseline in the ICN network and assembling an expert multi-stakeholder project team.
- Completed REALITI, an innovative research study that will shift clinical research and drug approval paradigms by collecting real-world data about the efficacy of a biologic agent for regulatory approval. Three abstracts were accepted by the Journal of Crohn’s and Colitis for presentation at the European Congress of Crohn’s and Colitis, as well as accepted to present during the 2024 Digestive Diseases Week. Full publication work is underway.
- Approved 4 new proposals for research; 51 total studies are currently underway, with another 3 under consideration.
- Published 9 new manuscripts in peer-reviewed journals and 7 poster presentations. As of the end of December 2024, ICN research had been cited 1095 times.
The ICN community continues to work together through 2025 and beyond. Our journey promises to be full of exciting discoveries, improvements, and innovation, as we:
- Continue to onboard more ICN care centers to Electronic Data Transfer, making data entry more efficient and reliable.
- Continue enhancements to the Outcomes Registry focused on streamlining the data-entry process for labs and medications. This improvement will make the process more efficient, accurate and user-friendly by also allowing for EDT of this data.
- Expand our research program to continue learning together about pediatric inflammatory bowel disease and its treatment and management.
- Further leverage capabilities of our Outcomes registry to harness ICN data more accurately to drive real-time improvement, innovation, and discovery in pediatric IBD.
- Continue to support the development of and share IBD resources co-produced by all members of the ICN community.
Our goal is to improve outcomes for children and youth with Crohn’s disease and ulcerative colitis who are cared for at an ImproveCareNow Center, where 82% of patients are in clinical remission (feeling well and fully active), 91% have satisfactory nutrition, 95% have satisfactory growth and 97% are not taking steroids. Currently, half of all children and youth cared for by pediatric gastroenterologists in the U.S. are treated at participating ImproveCareNow centers. We are eager to have you join us as we work together to pursue our 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.
Click here to see the most up-to-date Our Success.
--
Related links: