Session Descriptions and Handouts

Refer to the following list of options as you decide which breakout sessions to attend at the ImproveCareNow Fall 2026 Community Conference. Consult with colleagues attending from your center (including parent and patient partners) to maximize your team’s exposure to these sessions—plan to divide and conquer! Please contact [email protected] with any questions about these sessions.

⭐ Important note: ImproveCareNow uses the ICN Hub to share many handouts and resources. Many of the links below will work best if you are already signed in to your ICN Hub account. 

Jump to Friday

Thursday, September 17

8:15 a.m. State of the Network

Discover where we've been, where we're going, and how your participation can help drive our next chapter of success.

Resources:

9:40 a.m. Clinical Plenary: Health Maintenance in Pediatric Inflammatory Bowel Disease: Vaccination, Cancer Prevention, and Beyond

Resources:

11:05 a.m. Community Proposed Breakout I 

Clinical: Advancing Intestinal Ultrasound for Pediatric IBD Disease Monitoring

How and why you should incorporate intestinal ultrasounds into your practice.

Objectives:

  • Outline how intestinal ultrasound is performed
  • Discuss incorporating IUS into monitoring for pediatric IBD
  • Discuss the training pathway and its common practice and logistical barriers

Engagement/Equity: Navigating the Maze: Health Literacy & Real-World Solutions

This session will provide breadth and depth on how health literacy in pediatric IBD can impact outcomes across the illness journey from diagnosis until transition/transfer to adult care. The presentation will incorporate both current challenges in health literacy and strategies to improve health literacy/reduce the negative impact of poor health literacy on pediatric IBD care. This presentation will highlight insurance-related health literacy considerations ahead of Open Enrollment this Fall.

Objectives: 

  • Describe the role of health literacy as a Social Driver of Health (SDoH) and its impact on access and health outcomes for pediatric patients living with IBD
  • Discuss the intersection and impact of limited health literacy on daily and routine health needs for pediatric patients living with IBD and their families (e.g., reading & understanding prescription labels, navigating insurance)
  • Discuss strategies and resources that can help reduce health literacy barriers for pediatric patients living with IBD and their families

QI & Data/Technology: Beyond the Dashboard: Making Reliability the Engine of Quality Improvement

The session highlights how simple Quality Improvement (QI) tools can be used to improve patient outcomes, and how the power of the ICN Registry and its data can help us identify knowledge gaps and target areas for improvement. We will also explore upcoming innovative and technology based tools in the ICN Registry. The session will also include an interactive, hands-on portion, with activities to help participants understand QI methodology and identify the right strategy for their own center.

Objectives:

  • Describe the concept of reliability measures across data collection, data entry, data analysis, and workflow stages.
  • Examine how Artificial Intelligence (AI) tool available in ICNHUB can support data review and quality improvement efforts.
  • Develop center-specific reliability measures through guided group work.
  • Apply strategies and approaches already implemented successfully at other centers.

1:25 p.m. Community Proposed Breakout II

Clinical: Vaccine Dilemmas in Pediatric IBD: Real-World Cases and Clinical Decision-Making

  • Develop an individualized vaccination assessment and catch-up plan for a newly diagnosed IBD patient with an incomplete or unverifiable immunization record.
  • Identify the underlying drivers of vaccine hesitancy and apply patient-centered communication strategies to address concerns and build vaccine confidence.
  • Determine the optimal sequencing and timing of live vaccinations relative to biologic or immunosuppressive therapy initiation or stopping therapy.

Resources: 

Psychosocial Equity: Red Flags and Real Decisions: Navigating Medical Neglect, Ethics, and Child Protective Services in Pediatric IBD

Addressing suspected medical neglect in pediatric IBD requires a careful balance of clinical judgment, ethical analysis, and legal obligations. Through facilitated discussion, live polling, and interactive case-based scenarios, participants will explore how interdisciplinary teams recognize early warning signs, differentiate medical neglect from barriers to care, and navigate complex decisions involving patient safety and family autonomy. Attendees will evaluate response options, share perspectives across disciplines, and apply a structured decision-making framework to real-world situations involving treatment adherence, caregiver engagement, and child protective services (CPS) involvement. Participants will leave with practical strategies for family engagement, documentation, and interdisciplinary collaboration that can be adapted across institutions with varying policies and resources.

Objectives:

  • Recognize psychosocial, clinical, and contextual factors that may indicate potential medical neglect in pediatric IBD while differentiating them from barriers to care, health literacy challenges, caregiver stress, and medical mistrust
  • Apply an interdisciplinary ethical decision-making framework through case-based discussion to evaluate risk, consider diverse perspectives, and determine appropriate interventions that promote both patient safety and family-care team alignment
  • Develop practical approaches for family engagement, documentation, and navigation of CPS/DCF and institutional processes that can be adapted to participants' local policies, resources, and team structures

Psychosocial/Research: Positive Psychological Factors and Pain in Pediatric Inflammatory Bowel Disease: Exploring the Potential Protective Role of Mindfulness, Acceptance, and Quality of Life 

Explore the impact of pain in pediatric IBD and how positive psychological factors, such as mindfulness and acceptance, may support functioning, quality of life, and whole-person care.

Objectives:

  • Recognize the burden of pain in pediatric inflammatory bowel disease (IBD) and its impact on patient and family functioning, as well as quality of life
  • Identify the potential protective role of positive psychological factors can have on pain and health outcomes in pediatric IBD and chronic illness populations
  • Acquire findings from a novel study exploring the relationship between positive psychological factors (i.e., mindfulness, IBD acceptance, and global health-related quality of life) and pain in pediatric IBD
  • Identify future research and clinical priorities to improve positive psychological and pain outcomes in pediatric IBD

Engagement: IBD Across Generations

IBD Across Generations is an interactive, patient-centered session that explores how living with IBD changes throughout different stages of life and how those experiences shape treatment, transition of care, mental health, and daily living. Through personal storytelling and shared experiences from presenters across multiple generations, attendees will gain insight into the unique ways IBD impacts childhood, adolescence, college, adulthood, caregiving, and long-term disease management. The session will also include perspective from a pharmacist presenter to discuss medications, treatment accessibility, innovations in care, and differences between pediatric and adult treatment approaches. To incorporate quality improvement (QI) methodology and learning from improvement, the session will focus on identifying common gaps and disparities in IBD care across demographics and life stages through live polling, questionnaires, and audience discussion, providing qualitative insight into challenges related to communication, transition readiness, treatment access, and support systems. To create a more engaging and collaborative experience, audience members will receive color-coded cards representing different age groups or life stages, while tables will intentionally include a mix of colors to encourage conversations between individuals from different generations and perspectives. This structure is designed to spark meaningful discussion, highlight similarities and differences in IBD experiences across the lifespan, and foster connection and shared learning among attendees. The session will conclude with an interactive panel discussion and audience Q&A to encourage reflection, conversation, and collaborative problem solving. By centering patient and caregiver lived experiences alongside medical and psychosocial perspectives, this proposal represents whole person care while transforming storytelling and audience interaction into meaningful conversations about improving support, communication, and patient-centered care for individuals and families living with IBD.

Objectives: 

  • Identify the unique presentation of IBD across the lifespan through the sharing of lived experiences and personal treatment journeys
  • Apply meaningful collaboration and conversation between patients, caregivers, and healthcare professionals to improve transition of care, communication, and whole-person support for individuals living with IBD

2.35 p.m. Role Specific Sessions

Join your colleagues to discuss updates to current projects, celebrate successes, troubleshoot any challenges and identify new opportunities to improve outcomes for families.

Coordinators

Dietitians

Physicians, Advanced Practice Providers, Nurses, Pharmacists: Closing Care Gaps with Model Care Guidelines

Join us to learn more about the latest ICN Model Care Guidelines and how the registry will soon help us to identify patient specific care gaps.

Objectives:

  • Describe the ICN Model Care Guidelines
  • Leverage ICN Registry data to identify gaps in care

Resources: 

Patient Advisory Council 

Parent/Family Advisory Council (PFAC)

Social Work and Psychosocial Professionals (SWAP)

3:45 p.m. Engagement Plenary: Creating Better Care Together: Models and Lessons Learned for Patient and Family Partnership in IBD Care

Hear from three pediatric IBD centers and their patient/family partners as they share real-world examples of co-production in action. From patient-led initiatives to co-created resources and program development, speakers will discuss what worked, what they learned, and how others can begin or strengthen their own co-production efforts.

Objectives:

  • Describe the evolution of patient engagement in pediatric IBD care and quality improvement, from traditional support models to structured patient partnership and co-production approaches
  • Examine how patient partners, clinicians, coordinators, and families can co-produce meaningful improvements in care delivery, patient experience, and community engagement
  • Identify key practices for establishing and sustaining structured patient partnership programs
  • Apply lessons learned from patient-centered collaboration initiatives to develop scalable engagement strategies that support local improvement efforts and contribute to broader network-wide learning and impact

6:30 p.m. Join us at the Social Reception!

Unwind after a day of learning with an unforgettable evening featuring music, delicious hors d'oeuvres, and water views!

Friday, September 18

8:20 a.m. Clinical/Research Plenary

COMBINE in Action: Insights from Our Implementation Pilot

This session will highlight implementation strategies, participant insights, and lessons learned from a pilot designed to integrate COMBINE results into shared decision-making conversations with patients starting biologic therapy.

Objectives:

  • Describe the structure, methodology, and goals of the COMBINE Implementation Pilot
  • Identify the key implementation strategies used to integrate evidence based practices into clinical workflows
  • Interpret early pilot outcomes, including process measures and emerging impacts

9:40 a.m. Community Proposed Breakout III

Engagement/Psychosocial: Running on Empty: How Patient and Caregiver Burnout Impacts Pediatric IBD Care

Burnout is often misunderstood as a lack of engagement when, in reality, it may reflect an overwhelming accumulation of healthcare demands. In pediatric IBD, medical burnout can affect patients, caregivers, and healthcare teams alike, influencing adherence, communication, wellbeing, and health outcomes. This interactive session will examine the impact of burnout across stakeholders, with a particular focus on patients and caregivers navigating chronic disease management. Participants will explore how ICN data and clinical indicators can help identify individuals at risk, engage in experiential activities that simulate the cumulative burden of care, and learn evidence-based interventions designed to promote resilience, strengthen engagement, and support sustained participation in treatment. Attendees will leave with practical tools for recognizing burnout early and responding proactively within their own IBD programs.

Objectives:

  • Identify burnout and how it impacts all stakeholders across pediatric IBD focusing on medical burnout for patients and caregivers/families; explore how ICN data processes like PVP can be used to glean insight into burnout
  • Describe evidence-based interventions for burnout across stakeholders
  • Apply experiential learning/skills acquisition to reduce burnout across stakeholders

Psychosocial/Nutrition: The Rising Prevalence of Overweight and Obesity in Pediatric IBD: Transitioning to Clinical Action and Future Research.

This presentation outlines how increasing adiposity complicates the diagnosis, progression, and treatment of pediatric IBD, moving the medical community from passive observation to clinical action. 

Objectives:

  • Describe the prevalence of overweight/obesity in children with IBD within the ICN Network compared to general pediatric population
  • Examine impact of overweight/obesity on IBD treatment response
  • Identify intervention strategies for all members of the health care team
  • Discuss ways to engage in QI/Research efforts and next steps

Clinical: Are We There Yet: Barriers to Drug Approval in Pediatric IBD 

Our Call To Action: “The requirement for extra unnecessary procedures in current pediatric trials is an additional disincentive to enrollment. We have squandered precious time, but there is no reason that the current failed paradigm cannot change. Without significant modification of the current approval process, it is quite possible that no new therapies will be approved for children with IBD.”

Objectives:

  • Define the current regulatory landscape impacting pediatric IBD drug approvals
  • Determine ways we can optimize existing approaches to clinical studies for approval
  • Summarize the work done so far and a call to action - to work together to improve the current approval process for medications

10:55 a.m. Pathway to Mastery Learning Labs

Not sure which Learning Lab your care center is in? You can review the list here:  

ICN Network participants can find their Learning Lab groups on the ICN Hub.

If you are not currently a part of your Learning Lab Hub group, you will need to request to join by navigating to Network -> Private Groups, and then requesting to join your Learning Lab Hub group.

Foundations Learning Lab

Put on your detective hat and join Foundations Learning Lab participants for an interactive Quality Improvement (QI) investigation. Working in teams, participants will analyze process steps and uncover the solutions behind performance challenges. Through collaborative problem-solving and multidisciplinary perspectives, attendees will leave with practical tools and strategies they can apply to strengthen improvement efforts at their own centers.

Objectives:

  • Demonstrate meaningful connections and relationship-building among the Lab members, promoting collaboration, shared learning, and engagement
  • Apply QI investigation techniques to evaluate workflows, evaluate potential risks and vulnerabilities, and identify opportunities for improvement

Remission Learning Lab

Objectives:

  • Demonstrate meaningful connections and relationship-building among the Lab members, promoting collaboration, shared learning, and engagement.
  • Apply QI investigation techniques to evaluate workflows, evaluate potential risks and vulnerabilities, and identify opportunities for improvement

Clinical Standardization/Personalized Care Learning Lab Group

Objectives:

  • Describe the ethical and scientific problems related to low consent rates for observational research in ICN
  • Describe the rationale for an alteration to the consent process for observational research
  • Discuss how an alteration of the consent process, combined with increased communication about ImproveCareNow, can increase equity, scientific validity, and engagement

12:35 p.m. Research Plenary

Changing the ICN Research Conversation: Strengthening Ethics, Validity, and Engagement

Objectives:

  • Describe the ethical and scientific problems related to low consent rates for observational research in ICN
  • Appreciate the rationale for an alteration to the consent process for observational research
  • Describe how an alteration of the consent process, combined with increased communication about ImproveCareNow, can increase equity, scientific validity, and engagement

1:30 p.m. Patient Plenary

This interactive session will be a "Shark Tank" style innovation space where groups composed of a variety of stakeholders are tasked with brainstorming one thing that they would change about pediatric IBD care. Patient facilitators will help spark ideas and discussion amongst groups as they create short pitches to present to the panel of judges. Winners will be recognized for the Most Patient-Centric, PAC Choice, and Most Creative pitches though all groups will be encouraged to bring their ideas to life by participating in the PAC Innovation Lab throughout the year. 

Objectives:

  • Generate improvement projects that prioritize the patient perspective and experience in pediatric IBD care.
  • Demonstrate collaboration among diverse stakeholders to develop meaningful improvement projects.
  • Identify opportunities for change and develop feasible, actionable projects that improve an aspect of pediatric IBD care.

Resources

2:15 p.m. The Journey Continues

Every journey leaves a legacy while creating new pathways forward. In this special closing session, we will recognize and celebrate Dr. Shehzad Saeed's years of dedication, leadership, and service to the ImproveCareNow community. Through shared memories and expressions of gratitude, we will honor his impact while also looking toward the future as we announce our new Medical Director.

Back to ICNCC26F Event Page

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