IBD SuperFriends is a peer-to-peer network for Crohn’s disease and ulcerative colitis patients at the University of Chicago Medicine. Born out of the Patient Advisory Board, and supported by grant funding from Takeda, with additional support from Pfizer, this unique program brings together expert and novice patients from all walks of life.
Explains co-leader, Rachel Hendee, “The goal of the program is simple: we want to connect expert patients to patients who are new to this, and try to help them navigate the many challenges they will face. It promises to be a unique approach to building a community of patients that we hope will be rewarding to all those who participate.”
Experienced patients living with Crohn’s disease and ulcerative colitis can vouch for the reassurance that they received (or would have liked to receive) from talking to someone “like them” during dierent points on the path to healing: after getting an initial diagnosis, considering surgery, and learning about medications.
The program on August 25th will be a detailed half-day training to outline helpful tools and processes for new mentors, including information about how to share their stories, active listening skills, and dos and don’t for navigating what can be an emotionally charged experience. Following the program mentors will be matched with patient mentees with similar circumstances, with whom they will email, talk, meet or text—one time, or on a regular basis.
A handbook of materials has been created to help ensure that the program continues following its initial grant-funded phase, and program leadership hopes to support additional meetings in the future.
“I have gotten so much out of telling my story,” explains IBD SuperFriends co-leader, Grace Kelmer, “It feels so good to be able to help others experiencing similar challenges to those that I had, so they can learn from my experiences.”