ImproveCareNow Jill_horan


Growing Our Engagement Community – A How To Manual

The MassGeneral Hospital for Children (MGHfC) Parent/Patient Advisory Team (PPAT) was honored to be selected for an ImproveCareNow (ICN) Patient and Parent Innovation Fund award in the fall of 2017. As a team of parents, patients and healthcare providers, this award enabled us to work together to provide valuable educational programs aimed at increasing and family knowledge of IBD, and much-needed opportunities for patients and families to network with others to share information, knowledge and know-how.

As a team, we have chronicled our collaborative, year-long journey of working together to increase the number of participants enrolled in our PPAT engagement group and formalize a model that others across the ICN Network can steal shamelessly. Our project has culminated in a “How to Manual”, which we are excited to continue sharing across the ICN Network at our upcoming Virtual Community Conference. This manual shares our lessons learned, challenges, tips, and strategies to achieve success in growing a local engagement program that will connect, support, and engage IBD patients and their families. Our hope is that the manual will serve as a catalyst to help other centers achieve similar partnerships, which will result in improved IBD care and outcomes.


A thief in the night

Our IBD journey began over five years ago with our oldest daughter. It presented itself more like a thief in the night rather than a bold, coming out. For three years prior to diagnosis, there was a sense that something was not right, but the clues left were random and independent of each other. Add in a misdiagnosis and it would take someone highly skilled to assemble the clues and uncover the mystery.


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