In February 2020, just two months after I said Happy Trails to my ICN family, I got a call that my brother was being admitted to the hospital. He had experienced a 30lb weight loss in just two weeks, and reported up to 15 bloody stools per day, fevers, and fatigue. When he told me they suspected he had IBD my jaw about hit the floor. I knew thousands of people with IBD through my years working with ImproveCareNow and their pediatric IBD registry. But until February 2020, IBD had never touched someone I love.

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. 

Hi everyone! My name is Maitri, and I attend the Ohio State University (yes, the "the" is obnoxious but absolutely necessary). I am majoring in Neuroscience, and plan on attending medical school! I also work as a part-time PCA at Nationwide Children's Hospital. I was diagnosed with Ulcerative Colitis when I was 15. An interesting thing that most people don't know about me is that I am trilingual - I speak Gujarati, Hindi, and English!

So far, in 2020, 50 stories have been shared #InTheLOOP. Thirty-four community members have written about IBD from their perspectives as patients, parents, researchers, clinicians, improvers and friends. They have covered topics ranging from COVID-19 and telehealth, to IBD research and innovation projects, to their struggles, triumphs and hopes for the future. 

LOOP continues to make an impact in the IBD community, as a place where people can share their experiences and perspectives, to help others understand the realities of life with Crohn's disease and ulcerative colitis more clearly, and to keep us all #TalkingAboutIBD. Without further ado, here are the stories you read the most in 2020!

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 to support psychosocial health.” Today, we're sharing about "Information on financial and insurance coverage issues."

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 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.