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.

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.