“If you just sit and give folks a list of facts, they can debate those facts or try to refute them. They can't debate your story. Because it's your story." - Chris Keck on the imPACt Podcast 

Join Vanessa, Becky and Fionna for their conversation with Chris Keck from ImproveCareNow. We discuss storytelling - particularly personal narratives - and why stories matter.

My brother was diagnosed with ulcerative colitis when he was in high school. This was before ImproveCareNow and he had almost no access to resources or connections. He felt alone and I felt paralyzed by my inability to help him. Today, it’s my job to think about the thousands of patients and families living with IBD every day, and how to connect them with each other and the information and resources they need.

As we have shared in previous #WINWIN posts, the ICN Engagement Team is committed to gathering and effectively sharing information, knowledge and know-how that may help patients with IBD and their families. In a 2019 survey the Engagement Team asked the ICN Community to share how they prefer to connect, find and receive information. Their responses are helping us learn how to get the right information to the right people at the right time on their IBD journey. In this post we are sharing feedback related to communication and information seeking preferences of patients and patients.

This is a work in progress. Our ultimate goal is to get the right information, to the right people, at the right times and using a method that works for them. We want patients and families to have what they need, when the need it! If you have thoughts to share on these topics, please contact us so we can learn from you!

In February 2019 our Engagement Team asked the ICN Community to share what information, knowledge and know-how could help others living with IBD, and how best to get those resources into the hands of people who need them. Two weeks ago we shared feedback and resources related to “Information and resources surrounding different facets of IBD.” Today, we're sharing feedback and resources related to "Information and resources to support psychosocial health."

We know there is more work to do, and this is the start of identifying resources that can help our community. If you know of any resources that address the topics shared in this post, please contact us so we can share seamlessly.

In February 2019, the ImproveCareNow Engagement Team surveyed CIRCLE community members to identify information, knowledge & know-how that could benefit others living with IBD and their families/caregivers. Specifically, we hoped to uncover resources and methods of sharing that would help us identify gaps in resources and information ImproveCareNow currently provides to the IBD community.

Seventy people took our survey, including patients with IBD and their parents/caregivers. We learned a great deal through our analysis of the survey results. At a high level, we were able to identify four key areas of need:

• parents and patients want information and resources surrounding different facets of IBD, including:
  • general disease information
  • information on treatment
  • resources for helping them manage IBD
• respondents want information and resources to support psychosocial health, including:
  • to promote emotional wellbeing
  • access to patient and caregiver support groups
• respondents expressed difficulty with insurance coverage and financial issues
• respondents shared diverse preferences for how and where they receive information

Below we will dive more deeply into the area of “Information and resources surrounding different facets of IBD.” Where possible, we will link directly to useful resources that may help address some of the specific needs expressed through the survey. We know there is more work to do, and this is the start of identifying resources that can help our community. If you know of any resources that address these topics, please contact us so we can share seamlessly.

My brother has ulcerative colitis. For too long, I watched him suffer without access to the things he needed (education about the disease, a treatment that worked and that he was on board with, support and understanding). My brother, and everyone living with IBD, deserves to have access to all the tools, information, resources and support needed to not just survive with IBD – but to thrive.

ImproveCareNow Community Engagement Learning Series (CELS) trainings were designed by patients, parents, clinicians, and ImproveCareNow staff to share best practices and new skills. Whether you are just getting started or have an established team, you will get something out of these trainings. Each session presents new skills, and provides a chance to work with others to plan how to implement what you learned at your center. Each CELS training is designed to empower you to connect more patients and parents to your team, to build relationships, develop leaders, and share information that improves lives.

I always get nervous before group meetings. I worry that no one will show up or that the material won’t be helpful. Last Wednesday was no exception. When I walked into a conference room at Cincinnati Children’s Hospital I was nervous but shouldn’t have been. I was greeted by smiles, waves, and pizza.

I felt comfortable, accepted, and ready to learn.