Posted by ImproveCareNow™ on March 16, 2023
ImproveCareNow (ICN) has had enormous success since it began 16 years ago, including 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 Annual Update, which includes highlights and achievements from 2022 and plans for our continued work to improve health, care, and costs for young people with IBD in 2023 and beyond.
In 2022 ImproveCareNow continued to implement the 2021-2024 strategic plan’s following domains: Outcomes; Diversity, Equity, and Inclusion or “DEI”; Sustainability; Engagement; Technology.
Outcomes
- Updated our Model Care Guidelines based on clinical processes and current approaches to care
- Welcomed and onboarded surgical representatives across key ICN network committees
- Continued support of 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
- Approved 16 new proposals for research; 47 total studies are now underway, with another three currently under consideration
- Published six new manuscripts in peer-reviewed journals and one poster presentation. As of the end of December 2022, ICN research had been cited 868 times
- Redesigned our quality improvement (QI) infrastructure (called Pathway to Mastery (PtM)), by refining the governance and pathway structure to streamline QI activities and increase engagement. A total of 20+ care centers have advanced to the next pathway since PtM began
- Launched 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.
- Supported the improvement work of The Autoimmune Liver Disease Network for Kids Learning Lab (called A-LiNK). Now in its second year, A-LiNK continues to build their foundational structure, is developing Model Care Guidelines for AIH and PSC, and has catalyzed partnerships with pediatric hepatologists from 10 participating ICN care centers while integrating patients and parents through the A-LiNK Connections group
DEI
- Partnered with the DEI Committee to explore the current state of DEI work across the network to identify opportunities for improvement and innovative solutions to close the gaps that exist in outcomes across racial and socioeconomic groups within our network
- Continued to support Social Factors with Racial Disparities in Pediatric IBD (called SaFR Kids) with 23 participating ICN care centers and over 950 surveys completed
Sustainability
- Sustained active participation across our network of 100+ care centers and welcomed five new care centers. ICN now serves over 30,000 patients and their families, with over 1,400 clinicians, including 980 pediatric gastroenterologists
- Welcomed new members to the ICN Board of Directors, manifesting a multi-stakeholder configuration that incorporates recommendations from our 2019-2020 Digital Asset Governance project
- Celebrated ImproveCareNow Care Centers ranked in the U.S. News & World Report Best Children’s Hospitals of 2022-2023 with 10 out of 10 Honor Roll hospitals belonging to the network
Engagement
- Continued important work supported by a grant from the David R. Clare and Margaret C. Clare Foundation to study and implement methods to empower patients by identifying and studying feasibility of high-impact interventions to increase patient participation
- Supported the Patient Advisory Council (PAC) as they launched a new landing page for their PAC-created resources, produced episodes of their imPACt podcast, and finalized and shared the Health Literacy Toolkit
- Supported our Parent/Family Advisory Council (PFAC) as they redesigned and renamed their group to better engage parents and caregivers across the community
- Celebrated in-person with our community of improvers during our Fall Community Conference in Dallas, Texas. More than 200 improvers came together to share learnings & collaborate with each other in plenary & community proposed breakout sessions that aligned with the strategic aims
Technology
- Completed critical components of our registry transition to Outcomes
- Launched enhanced population management and pre-visit planning tools that will enrich continuous improvement, increase our efficiency, and enable more accurate data collection to allow providers to better understand and address patient needs
- Released more interactive features within a patient’s Care Stratification Score (CSS) that drills through to provide more patient information, including disease state and demographics
- Rolled out a new Quality Improvement dashboard in Outcomes, that includes interactive charts with sparklines showing trends over time across a range of measures
- Continued to grow community engagement on the ICN Hub, our online collaboration platform to facilitate real time, multidirectional, and peer-to-peer sharing of information, knowledge, and know-how in various ICN projects and workgroups
The ICN community continues to work together through 2023 and beyond. Our journey promises to be full of exciting discoveries, improvements, and innovation, as we:
- Continue to organize and advance work in the five domains of our Strategic Plan
- Expand our research program to continue learning together about pediatric inflammatory bowel disease and its treatment and management
- Close out the COMBINE study analysis as it completed data collection. The study is the largest randomized trial ever conducted in pediatric Crohn’s disease and results will be published soon along with guidance on what they mean for standards of care
- Further leverage capabilities of our Outcomes registry to harness ICN data more accurately to drive real time improvement, innovation, and discovery in pediatric IBD
- Share best practices to enhance our current consenting process, including the next version of eConsent and a consent form that is more easily understood by patients & caregivers
- Continue to support the development of and share IBD resources co-produced by the ICN community, including resources created for patients by patients through work led by our Patient Advisory Council
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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