ImproveCareNow (ICN) has had enormous success since it began 17 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 2023 Annual Update, which includes highlights and achievements from 2023 and plans for our continued work to improve health, care, and costs for young people with IBD in 2024 and beyond.

In 2023 ImproveCareNow continued its work in the 2021-2024 strategic domains: Outcomes; Diversity, Equity, Inclusion (DEI); Sustainability; Engagement; Technology.

Outcomes

  • Reported a shift in Sustained Remission from 57% to 59%. This improvement means 117 additional ICN patients have not only achieved clinical remission, they have sustained it for at least one year.
  • Continued to implement our Model Care Guidelines based on clinical processes and current approaches to care, including sharing draft guidelines for depression screening to be finalized and implemented in 2024.
  • Published findings and began implementation of standards of care from the COMBINE trial. This study is the largest randomized trial ever conducted in pediatric Crohn’s disease.
  • 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 6 new proposals for research; 45 total studies are currently underway, with another 4 under consideration.
  • Published  9 new manuscripts in peer-reviewed journals and 12 poster presentations. As of the end of December 2023, ICN research had been cited 1,026 times.
  • 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 continued to onboard new centers, demonstrating how to identify and register their center’s IBD Population in the Outcomes Registry and build their ICN culture and processes.
    • Pre-Visit Planning and Population Management leveraged process improvements and deep dives into data to better share learnings and increase reliability of these processes across centers.
    • Clinical Standardization / Personalized Care hosted a design day to revise its SMART Aim, Key Driver Diagram, and overall learning objectives.  
    • 2023 saw three care centers advance along the pathway for a total of 25 care centers strengthening their core processes to manage their IBD populations and advance their delivery of care since the Pathway to Mastery began.
  • Successfully launched the third cohort of the Introduction to Quality Improvement series which teaches participants to apply the Model for Improvement tools and methodology in a QI project specific to their center and its needs. Two projects from IQI went on to share their learnings at an ICN Community Conference.
  • Supported the improvement work of The Autoimmune Liver Disease Network for Kids (A-LiNK). Now in its third year, A-LiNK has 10 participating centers whose data capture into their REDCAP Registry has led to establishing baseline data, further informing their quality improvement efforts. Interest in A-LiNK continues to grow, and they aim to double the number of participating centers in the coming year
  • Celebrated in-person with our community of improvers during our Fall Community Conference in Louisville, Kentucky. More than 200 improvers came together to share learnings and collaborate with each other in plenary and community proposed breakout sessions that aligned with the strategic aims.
  • Continued to offer virtual events, including a Live Online Community Conference, Community Wide Webinars focusing on specific topics, and Immersion for new ICN care center staff. We’ve been able to reach more than 1200 attendees virtually, making learnings and the ICN culture more accessible to every member of the ICN Community.

Diversity, Equity, Inclusion

  • Updated Outcomes Registry to reflect more accurate options for race and ethnicity to better depict our patient population.
  • Initiated discussions on best practices for Social Determinants of Health screening to identify opportunities for standardization.
  • Collaborated with internal data experts to bring awareness to the current state and the gap that exists in outcomes between white patients and patients of difference races and ethnicities, as well as focusing on increasing completeness of data entry through targeted center reach outs and increased visibility to missing data.
  • Completed participation in the Social Factors with Racial Disparities in Pediatric IBD study (SaFR Kids) with 23 participating ICN care centers and over 950 surveys completed. Data is currently being analyzed and a poster from the study’s progress was presented at Digestive Disease Week. Publication work is underway.

Sustainability

  • Sustained active participation across our network of 100+ care centers and welcomed  two new care centers. ICN now serves over 30,500 patients and their families, with over 1,400 clinicians, including 990 pediatric gastroenterologists.
  • Welcomed Missy Ketchum as the new Chair of the Board of Directors, as we said to farewell to Dr. Howard Baron who had served as Chair of the Board since 2020. Missy is the second parent to hold the seat of Board Chair.
  • Celebrated ImproveCareNow Care Centers ranked in the U.S. News & World Report Best Children’s Hospitals of 2023-2024 with 8 out of 10 Honor Roll hospitals, and 43 out of 50 best hospitals for Gastroenterology & GI Surgery, belonging to the network. 

Engagement

  • Continued important work supported by a grant from the David R. Clare and Margaret C. Clare Foundation to study the impact of engagement on outcomes by increasing patient participation in care.
  • Supported the Patient Advisory Council (PAC) as they planned and contributed to 11 sessions at ImproveCareNow conferences, and continued to work on several resources that will be available to the ICN community soon.  
  • Supported the Parent/Family Advisory Council (PFAC) as they grew their membership, launched a new logo and created marketing materials to help spread the word and encourage more caregivers to join their monthly calls. The PFAC also began work with the Social Workers & Psychologists workgroup on the creation of a new resource.
  • Hosted our twelfth Virtual Community Conference, an event co-designed with the PAC and PFAC to share educational content from the Fall in-person Conference 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 58, reducing manual data capture burden across centers.
  • Introduced an upgrade to the ICN Hub, the communication and collaboration platform that facilitates innovation and improvement in the ICN Community. The upgrade will be completed in 2024 and support further coproduction across the community.
  • Implemented new processes to better identify and investigate possible special cause events in our Outcomes Registry data, resulting in subsequent center line shifts of ICN outcome measures.

The ICN community continues to work together through 2024 and beyond. Our journey promises to be full of exciting discoveries, improvements, and innovation, as we:

  • Finalize ImproveCareNow’s Strategic Plan for FY25-28, which includes more comprehensive feedback and participation from every stakeholder group in the network.
  • Establish and incorporate Depression Screening Guidelines into the Model Care Guidelines.
  • Continue to onboard more ICN care centers to Electronic Data Transfer, making data entry more efficient and reliable.
  • Identify and implement standard practices for Social Drivers of Health screening and build a toolkit to help centers address the risks identified through screening. Continue to collaborate with experts to eliminate the gap in outcomes between white patients and patients of different races and ethnicities through improvements in data capture in Outcomes Registry.
  • Develop a quality improvement project focused on increasing the percentage of patients consented for participation in ICN research, leveraging network and center specific data to understand variation and develop best practice resources.
  • 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. 

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Related links:

2022/2023 Annual Update

2021/2022 Annual Update

2020 Annual Update

2019 Annual Update

2018 Annual Update

2017 Annual Update

2016 Annual Update

2015 Annual Update

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