Roundtables — Generation Patient

Roundtable: Chronic Medical Disabilities & Higher Education

The Roundtable on Chronic Medical Disabilities and Higher Education sought to recognize and support the unique learning and socioemotional needs of college students with chronic and rare medical conditions. This two-part roundtable was sponsored by the Lumina Foundation.

Enter your email in the form below to download the proceedings from our Roundtable! The proceedings outline the critical discussions that took place during this Roundtable and highlight the major themes that came about during these sessions.


Roundtable: Peer Support as an Intervention for Young Adult Patients

At Generation Patient, we firmly believe in the power of peer support. We recognize that adolescent and young adult (AYA) patients face unique challenges, including a heightened risk of mental health issues and feelings of isolation. By fostering peer connections, we not only aim to alleviate this isolation but also to enhance disease acceptance and management. Unfortunately, there has been a lack of attention given to comparative clinical effectiveness research specifically focused on AYA patients, particularly regarding the critical role of peer support in the long-term care of individuals diagnosed with lifelong conditions during their childhood and young adulthood.

To address this gap, the Roundtable on Peer Support as an Intervention for Young Adult Patients will explore the opportunities, barriers, existing data, and the pressing need for further patient-centered outcomes research and comparative effectiveness research related to peer support in the treatment of AYA patients. This Roundtable will serve as a collaborative learning community comprising various stakeholders, including young adult patients, caregivers, medical professionals, and researchers. Over the course of two years, we will convene six times a year to engage in meaningful discussions centered around peer support.

This roundtable is supported by the Eugene Washington PCORI Engagement Award Program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). You can learn more about the details of our project here.


Roundtable: Young Adults with IBD

The Roundtable on Young Adults with IBD is a yearlong learning community comprised of monthly discussions between patients and providers in an effort to improve outcomes for the young adult IBD-patient population. This Roundtable is made possible with the support of the Helmsley Charitable Trust. 

Adolescents and young adults (AYA) with IBD are a growing demographic worldwide. With over 25% of IBD patients being diagnosed before the age of 16, there is an urgent need to holistically address the challenges these individuals face as they transition into adulthood, especially since those diagnosed with IBD at younger ages typically have a greater burden of disease and rates of complications. Additionally, young adults with IBD utilize emergency services more than any other IBD adult sub-population and face a higher economic burden due to the early onset of their condition. These patients are confronted with numerous challenges, yet these distinct issues are largely unaddressed by the medical community. Furthermore, clinical research does not adequately include AYAs with IBD which continues to exacerbate this issue. As the number of IBD patients continues to expand, it is important to recognize the unique global challenges that young adult patients confront during this critical point of development and transition.

The lack of awareness surrounding these challenges presents an opportunity for the Crohn’s and Colitis Young Adults Network to implement this novel, yearlong Roundtable in the IBD space. Through this Roundtable, we hope to fill the voids in the treatment of AYA patients with IBD by actively promoting all stakeholder perspectives, including patients at the forefront.

We are proud to announce that the proceedings of this roundtable will be published in a special collection by the peer-reviewed journal Health Care Transitions! For more information on this partnership, click here.

Roundtable Nine: Men's Health and IBD

Presentation by Dr. Grant Barber, a Clinical Assistant Professor at Stanford University, and Grady Stewart, a young adult IBD patient and 2020 CCYAN Fellow. Read the proceedings for this discussion here.

Roundtable Eight: Medical Trauma & ACE’s

Presentation by Dr. Laurie Keefer, an academic health psychologist and the Director for Psychobehavioral Research with the Division of Gastroenterology at Mount Sinai, and Nikhil Jayswal, a young adult IBD patient, 2020 CCYAN Fellow, and founder of IBD Patient Support Foundation (India). Read the proceedings for this discussion here.

Roundtable Seven: Clinical Trials & Young Adults With IBD

Presentation by Dr. Jeremy Adler, Pediatric Gastroenterologist and Interim Director at the Susan B. Meister Child Health Evaluation and Research (CHEAR) Center, and Sneha Dave, a young adult IBD patient.

Roundtable Six: Sexual Health, Reproductive Health, and Family Planning for Young Adults with IBD

Presentation by Dr. Alyse Bedell, assistant professor of Psychiatry and Behavioral Neuroscience and assistant professor of Medicine at the University of Chicago, and Rachael Whittemore, a young adult IBD patient and 2020 CCYAN Fellow. Read the proceedings for this discussion here.

Roundtable Five: Providing Affirming IBD Care to Young Adults in the LGBTQ+ Communities

Presentation by Dr. Laura Targownik, director of the Division of Gastroenterology and Hepatology at the University of Toronto; and Lucy Laube, a young adult IBD patient and 2020 CCYAN Fellow. Read the proceedings for this discussion here.

Roundtable Four: Peer-Support Interventions

Presentation by Dr. Sara Ahola Kohut, a psychologist and Health Clinician Scientist with the IBD Centre at The Hospital for Sick Children (SickKids) and an Assistant Professor with the University of Toronto, and Mara Shapiro, a young adult IBD patient and 2022 CCYAN Fellow. Read the proceedings for this discussion here.

Roundtable Three: What Adult GIs Should Know About Young Adults with IBD

Presentation by Dr. Stacy A. Khan, assistant professor of pediatrics at Boston Children’s Hospital, and Linda Yoo, a young adult IBD patient and 2023 CCYAN Fellow. Read the proceedings for this discussion here.

Roundtable Two: Higher Education, the Workplace, & Financial Challenges

Presentation by Amy Bugwadia, a young adult IBD patient and medical student at Stanford University, and Whitney Gray, IBD nurse practitioner at UPMC Children’s Hospital of Pittsburgh. This presentation was followed by a discussion between young adult patients, caregivers, and healthcare professionals. Read the proceedings for this discussion here.

Roundtable One: Understanding emerging adults with IBD

Presentation by Dr. Sandra Kim, the Director of Pediatric Gastroenterology at the Cleveland Clinic, and Sneha Dave, a young adult IBD patient. This presentation was followed by a discussion between young adult IBD patients, caregivers, and healthcare professionals. Read the proceedings for this discussion here.