The C.S. Mott pediatric IBD team hosted its first engagement meeting. Our first meeting brought together a group of parents, patients, doctors, nurses and improvement coordinators to learn about and share what goes on behind the scenes in our IBD clinic. We designed it as a safe place to ask questions and provide feedback, meet and mingle with others, and (very importantly) gave parents and patients the opportunity to choose if they want to be involved in any of our efforts.

Our team at C.S. Mott Children’s Hospital team is growing. Since our first engagement meeting last year we’ve grown from 1 parent partner to 3 parent partners and 2 patient partners, in addition to a handful of parents and patients who receive regular updates on our efforts and will maybe consider advancing their partnership at another time.

We have had parents reach out to us about help with data analysis, fundraising, and mentoring. Our patient volunteers organized summer internships in order to really understand what goes on behind the scenes of care. They are creating goals and timelines in order to co-produce events. Together they have published two editions of a pediatric IBD newsletter written by patients and families, they have successfully helped us form a division team for the CCFA Take Steps Walk, and they have started fundraising planning to reach their goals.

I’ll be honest; it was a lot of work and coordination. But isn’t every new initiative a lot of work and coordination? When your doctor tells you that you need to incorporate 30 minutes of cardio in your routine 4 days a week it’s a struggle to create that new routine but you do it because you know how important it is (I hope). The thing that makes all this hard work worth it though is the value I can see in bringing all these people together. They’re sharing their stories, passions and success and producing resources that our division has never had the luxury of perusing. Together we’re identifying new initiatives that our team can tackle together. And together we’re working towards a pretty incredible mission – to get kids with IBD better right now.


This is the final post in a three-post series. Did you miss the post before this one? Read it here.

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