Posted by Jill Plevinsky on December 04, 2012
[editor's note: Jill shared this post on her personal blog in honor of mentoring and #ibdweek.]
The other day I was listening to a couple of physicians discussing a patient with IBD..
"He's been on every medicine, and he says the Remicade is making his psoriasis almost unbearable.. I don't know what to do because the Remicade is helping his GI symptoms a ton. Maybe Humira or Cimzia won't make his GI symptoms that bad.."
I interjected at this point and said, "It'll still affect his psoriasis," at which point the physician replied with: "How do you know that?"
"Personal experience."
And with that he folded his arms and leaned back in his chair and said, "Huh."
..the moral of the story being that physicians may not place quite as much stake in personal experience as they do science and medicine. However, patient communities thrive on sharing their stories and benefiting from each others trials and triumphs.
The C3N Project and ImproveCareNow want to make it even easier for patients to access this kind of social support through developing a mentoring program where kids and teens with inflammatory bowel disease can educate one another, where older veterans of Crohn's disease and UC can help newly diagnosed patients as their peers.
This intervention is in it's infancy, and we need patient input. The program is being implemented at Cincinnati Children's Hospital and Nationwide Children's Hospital first - CCHMC is testing out a group-based program while Nationwide will be piloting a more one-on-one model. With the collaborative's resources, we'll be able to develop a mentoring model that will serve all 40+ ImproveCareNow centers and beyond!
Happy IBD Awareness Week everyone, and remember to stay tuned for daily posts through the week..