The PAC is working to expand a patient-to-patient mentoring program. They have a lot of momentum right now and PACer Christian Hanson and his task force members wanted to share why mentoring is important to them and how they see it making an impact in the lives of others living with IBD.

When I was first told I had colitis I was only 7 years old. I had really bad cramps and started pooping blood. We went to the doctor and he checked me out. They didn’t really know what was wrong at first and we had to go back to the doctor again until my mom insisted that something was really wrong. They took some blood. After that, they put me in a special room where he put an I.V. in and covered it with what felt like a cast. In 30 minutes I was put on a stretcher and rushed out the door and into an ambulance. Off to a different hospital. I knew it would take a while, so I fell asleep, next thing I knew I was on a hospital bed with my mom. My favorite blanket was with me, but I didn’t know how it got there.

So, a few weeks ago, at the Spring Community Conference, I ran an experiment (with a little help from my friends). The goal was to get conference-goers to commit to 24 hours of experiencing one – single – lifestyle change that some patients with IBD face when trying to get their guts to “quiet down.”  I invited them (after doing it myself) to replace their daily meals with liquid nutrition, while continuing with business as usual (attending a professional conference, where many were looking forward to a nice meal with their colleagues and friends on Friday evening). Further, I challenged them to spend meal and snack times interacting with others at the conference, who I like to refer to as “eaters.”

Just after the ImproveCareNow Spring Community Conference last month, I wrote about the anxiety and anticipation that can precede such events. As I explained, “what we really want is to have set a scene that will allow all to feel welcome, included, part of the community, free to share their ideas and expertise regardless of role, and that they will leave having felt both delight and full of the “human affections” that are (or should be) the hallmark of a truly collaborative improvement community.”

After the conference, we asked members of the community—from diverse roles and centers—to share their perspectives on how we did. We hope you’ll enjoy their words. I know we all feel the challenge to maintain our momentum and indeed do even better next time and hope you will join us in finding ways to make our next community gathering equally inclusive and participatory – the very best it can be!

One week, two chances to learn and grow together.

Just this past week, two ImproveCareNow centers hosted IBD education events. These events are incredible ways not only to learn with patients and families, but also to raise awareness about their role in a learning health system that aims to improve care for many.

Early in my medical school experience, a classmate and I discovered we had both been navigating the wild waters of med school with our own separate but similar chronic diseases, silently, without realizing the other was paddling and advocating for change right alongside us. You really never outgrow of the need for mentorship and support; one of the many myths of the pediatric-adult care transition.

We teamed up, connected with another classmate with experience and skill of her own, and founded the Disability Awareness Association to raise awareness and advocate for ourselves, our colleagues, and our future patients with disabilities. We asked ourselves a question: How can we spark discussion in our medical education about life with a disability beyond what our textbooks say?

I was invited to a PCORnet talk on Building Trustworthiness in late March 2016 where I was asked to discuss children as a special population. My talk, which I’ve shared below, examines how ImproveCareNow engaged pediatric patients in a way that moved beyond the token role often lamely offered to children, and the powerful ability for patients to be involved in and generate meaningful research based on questions important to us as a cohort.

As you know, the weeks leading up to an ImproveCareNow Community Conference are a few parts busy, a few parts exhilarating, and a few parts stressful (though luckily the ratio changes by the day). There is a lot to do, but our team has done it many times before and indeed our team has grown exponentially as we’ve come to consider the whole community part of the planning process. It’s hard work, but its work we’re doing together and we all look forward to celebrating together once the big event arrives.

Dating, especially in the early stages, is full of emotion…excitement and nervousness are sure to abound. However, with IBD patients, there’s a bit more hiding beneath the surface that the other person usually does not yet know about. How do you tell your significant other about IBD? How does one explain something so complicated? How do you work it into conversation? When is the right time? One of our new PAC members, Samara, recently started dating and has personal experience to share.