ImproveCareNow Coproduction


Our top 10 blog posts of 2022

LOOP is an important place for our community to keep #TalkingAboutIBD. It’s a place where #StoriesMatter - where they connect us, build confidence, validate our experiences, remind us we are not alone, and motivate us to continue improving together.

So far, in 2022, 41 stories have been published by patients, caregivers, clinicians, collaborators, researchers, staff & leaders from across the ICN community sharing their unique perspectives on and experiences with IBD. Our top stories this year have covered a variety of topics, including: research on diet and fatigue, innovative IBD projects, new member introductions and top tips for newly-diagnosed patients, conversations about medical trauma, collaborating with IBD caregivers, and gratitude for leadership and learning together so we can all improve the health and care of people living with IBD.


Fall 2022 ImproveCareNow Community Conference - Re-Emerging Stronger Than Ever

We are excited to be hosting our Fall 2022 Community Conference in Dallas, TX later this month. This will be our first in-person event since moving to a Live Online format in Spring 2020 in response to the onset of the COVID-19 pandemic. September 21-23 we look forward to engaging with healthcare providers, patients and parents from across ImproveCareNow to all teach and all learn about recent results in our pediatric IBD research and improvement efforts. Download our draft agenda to preview the full conference schedule ⬇⬇


Episode 27 of the imPACt podcast - Mental Health and IBD Flares

Welcome to the second episode in a 3-podcast series we're doing in collaboration with the ICN SWAP group (SWAP stands for Social Workers & Psychologists). In this episode, you'll hear me (Ryleigh) and my fellow PAC member Avery talking with Lauren Potthoff, PhD - an IBD psychologist at Lurie Children's in Chicago - about mental health during IBD flares.


PAC Moment - Patient Perspectives in IBD Care

The Patient Advisory Council (PAC) is continuously focused on advocating for IBD patients and promoting the patient perspective in IBD care. PAC Projects (like toolkits and podcasts) are one way we do this. Here are some of the things we've been working on lately:


Episode 23 of the imPACt podcast - Happy One Year!

The PAC released episode 1 of our imPACt podcast on February 28, 2021. Join me (Vanessa) and my communications co-chair, Fionna as we celebrate one year of imPACt and chat about some of our favorite parts of podcasting, share which episodes we like the most, and talk about where the podcast may be headed in the future.


Lifestyle and IBD - A New Web-Based Toolkit for Patients by Patients

Lifestyle and IBD is a new web-based toolkit that the Patient Advisory Council (PAC) began working on in early 2020. As COVID-19 impacted the lives of many across the country and the world, discussions about how IBD impacts how patients live became especially important to members of the PAC and the greater IBD community. Seeing a need, we decided to co-produce a resource - for patients, by patients - that could help others by sharing direct patient experiences, patient-developed information, resource links, and professional information and insights.


Episode 20 of the imPACt Podcast - PAC Toolkits Recap

One of the opportunities that active PAC members have is to work on the creation of PAC toolkits. These resources cover many different topics related to life with IBD, but they all share one important thing in common - they are for patients, by patients


Top Ten LOOP posts of 2021

LOOP is an important venue for our community to keep #TalkingAboutIBD. It’s a place where #StoriesMatter - where they connect us, grow our confidence, validate our experiences, remind us we are not alone, and motivate us to continue improving together.

So far, in 2021, 70 stories have been shared #InTheLOOP. Patients, clinicians, parents, dietitians, researchers, and staff & leaders from across the ICN Community have written about IBD from their unique perspectives. They have covered topics ranging from support and advocacy to the importance of sharing openly and talking about IBD, from research and innovative projects to personal struggles, triumphs and hopes for the future.

Without further ado, here are the stories you read the most in 2021!



ImproveCareNow featured in Healthcare Innovation article about co-production

ImproveCareNow was highlighted in a September 2021 article by Healthcare Innovation called Pulling Together Around the Patient Experience. In the article, author David Raths uses interviews with key network participants to characterize the ways in which patients and clinicians are working together to co-produce care pathways, outcome measures and clinical trials - and the impact these efforts are having.


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