ImproveCareNow Parents


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.


Helping to make a difference in the IBD community

My name is Erin, and my daughter Caroline was only 9-years-old when she started losing weight, stopped growing and was exhausted all the time. As she grew sicker, she could not keep up with school, play with her friends, or participate in the activities she loves most: soccer and ballet. It took us almost 18 months to arrive at a diagnosis of Crohn’s disease.


Keep in touch...

The Parent Working Group (PWG) has 160 participating members, and we’re always encouraging them keep in touch with each other; to share ideas, experiences and knowledge, to support one another and to communicate openly about issues and opportunities at their local centers. Last year we challenged ourselves to create a resource that would ease the flow of information and inspire these kinds of connections.


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.


Illness and inspiration

My name is Steve Woolf and I come from a family of five in Fairfax, Virginia, including a daughter in college and two 17-year-old twins, one of whom is Becky. Becky was diagnosed with Crohn’s disease at age seven, although we believe she was symptomatic before then.


I'm the parent partner

My name is Kathy Rygg, and I’m the parent partner at Children’s Hospital & Medical Center in Omaha in Nebraska. My son, who is now 11, started having symptoms at two but wasn’t diagnosed with ulcerative colitis until age five. 


What We Learned at the Fall Community Conference, and What We're Doing Now

Thanks to the generosity of the ImproveCareNow community, and the hard work and dedication of our parent and patient partners, 30 members of the Parent Working Group and Patient Advisory Council joined us at the Fall 2018 Community Conference in Chicago. It’s been two months since we returned to our respective communities, and some parent and patient partners wanted to share their reflections on what they learned while at the conference and how they are using this at their local center to improve care.


Collaboration. Connections. Community.

These three words (collaboration, connections, community) come to my mind when I think of ImproveCareNow (ICN). And they represent three reasons I love leading our Family Advisory Council and sharing ICN with the families of Dayton Children’s. These are my people. They understand my life. They, too, know what it’s like to parent a child with IBD.

It is for all of these reasons that I am thrilled to host Virtual Community Conference (VCC) Watch Parties – so we can collaborate, connect and feel like we’re part of a community.


Honored to Serve

My name is Missy and I am a new member of the ImproveCareNow Board of Directors. When my son was diagnosed with Crohn’s disease in the fall of 2016, one of the handouts I received from our care team at Nemours Jacksonville was a flyer about ImproveCareNow (ICN). That night I signed up for the Parent Working Group and the ICN newsletter.


Perspectives

Have you ever taken one of those silly photos that attempts to distort your perception of a landmark or scene? For example, you might make it look like someone is holding the Eiffel Tower by its point or a friend is standing in the palm of your hand. Those photos are all about your point of view or your perspective. Perspective affects a lot of things. Perspective can affect your focus, opinion and even your advice. Recently, as I attend my first ICN Community Conference, the concept of perspective was with me throughout.


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