ImproveCareNow Tool


Episode 3 of the imPACt Podcast

I had the pleasure of presenting at the Spring 2021 Live Online Community Conference last week on the topic of “Recovering from Flares”. Myself and other PAC members discussed things like: what a flare looks like, how a patient can anticipate a flare and what steps they can take in communicating with their providers and family to avoid serious health repercussions. Our goal was to really emphasize proactivity and empower patients to take charge of their health. 

I'm really excited about this topic and have shared a bit more about it below, including how you can listen as we continue the conversation in Episode 3 of the imPACt podcast this Friday.


FAQ about the Shared Decision Making Toolkit for IBD Surgery

At April’s Live Online Community Conference (LOCC), Dayton Children’s introduced the Should I have IBD surgery? shared decision-making webtool and Dear Ostomy video. These resources are key components of an IBD Surgery Shared Decision-Making Toolkit that the Dayton team created using an ImproveCareNow (ICN) Innovation Fund award, made possible with support from the Clare Foundation. The toolkit generated a lot of excitement and questions, so project leaders, Dr. Kelly Sandberg and parent Shellie Doub took some time to answer to the most frequently asked questions.


Patient Perspectives: Nutrition & IBD – a New Resource for Patients by Patients

My name is Maddie. I am a member of the Patient Advisory Council (PAC) and a contributor to the PAC’s latest IBD Resource – Patient Perspectives: Nutrition & IBD. This booklet is very important to me and the other contributors who have used nutritional interventions to treat and manage their IBD.

Nutrition is an important part of life and for IBD patients it can play an essential role in overall health. Nutrition can be used as a primary treatment, as well as secondary or complimentary treatment, which can support overall well-being. Sharing our experiences with nutritional interventions helps us raise awareness of how nutrition fits into real-life IBD treatment and management. It allows us to offer support and reassurance to other patients who are making decisions about or coping with nutritional interventions – that they are not alone.


What should I do first?

The first question new parent partners often ask is: What should I do first? One of the first projects I worked on with my team was to create “CHOC’s Guide for your IBD Road to Wellness” – a handbook for newly diagnosed families.


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.


PAC 2018 Year in Review

It’s been a busy year for the Patient Advisory Council (PAC). Twenty-eighteen has seen the PAC evolve to be more dynamic and engaged than ever before. The progress and developments made in our group of 50+ patient members include substantial leadership changes and more toolkits than I can even remember. 


New Resource: PAC Accommodations Toolkit

As co-chair of the Patient Advisory Council (PAC) Advocacy task force, I am excited to announce our new Accommodations Toolkit! Becky and I (with lots of support from the entire PAC and ICN social workers) developed this toolkit as a resource to help patients, parents and providers better understand and navigate the accommodations process.


PAC Body Image Toolkit

Body image is a topic that Inflammatory Bowel Disease patients don’t often talk about due to the embarrassment and fear associated with opening up about their experiences with their Crohn’s disease or ulcerative colitis.

It can be incredibly frustrating to feel like you have no control over how your body works or looks, especially given all the messages we receive from the media about how a body ‘should’ look and behave. We wanted to create the Body Image Toolkit as a way to express our experiences, provide tips, and start conversations about body image & IBD. It’s important to know that we’re not alone in our feelings, and that there are so many people who understand what we’re going through! 


Nationwide Children’s video series shares accurate, understandable, patient-friendly info about IBD

Getting accurate, understandable, patient-friendly information about IBD is not always easy. But what if other kids who actually have IBD told you about IBD anytime you wanted, and would only give you information that IBD experts felt was accurate? And what if the information they shared would only take a few minutes? That would be great, right? 


PAC Travel Toolkit

Traveling with IBD, whether it be inside or outside the country, isn’t always easy. However, the PAC has created a new tool to answer questions, share experiences, and hopefully help ease some of the stress of traveling with IBD! Initially, we planned to offer information for patients wanting to study abroad. After giving this idea some more thought, PAC members decided a toolkit with general information about traveling is more relatable and would help more people. Thus, the Travel Toolkit was born!


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