ImproveCareNow Engagement


2021 / 2022 Annual Update

ImproveCareNow has had enormous success since it began 15 years ago, including increasing remission rates for thousands of young people with IBD, transforming how pediatric IBD care is being provided, enlightening and exciting clinicians and other care providers, and engaging patients and parents in a shared purpose and work. We are pleased to share our ImproveCareNow Annual Update, which includes highlights and achievements from 2021 and plans for our continued work to improve health, care, and costs for young people with IBD in 2022 and beyond.


Sharing the story of how patient and family engagement can impact IBD care - a clinician perspective

In December 2021, our team's ICN Coordinator/Data Analyst - Ashley Kiel - shared her experience as an essential, but non-clinical team member involved in the challenge we undertook to educate our local IBD community about the ImproveCareNow CIRCLE and how patient and family engagement can positively impact overall care and treatment of IBD. Now, I'd like to add my perspective, as a pediatric GI doc, on why engaging with patients and families is so important, how we have been pursuing engagement efforts over the past year, and what others can steal shamelessly from our experience.


Sharing the story of how patient and family engagement can impact IBD care

My name is Ashley and I am the ImproveCareNow Coordinator/Data Analyst for the IBD Team at Nationwide Children's Hospital. My team was challenged by the Engagement Trailblazers to educate our patient population about ImproveCareNow's CIRCLE and how patient and family engagement can positively impact overall care and treatment of IBD. 

ImproveCareNow Learning Labs are small groups of care centers with key characteristics in common or who are working on similar issues. This structure enables care centers to work more closely together to catalyze improvement and to maintain personal connections as our Network grows. Engagement Trailblazers is a Learning Lab focused on finding ways to connect with all patients and families across ImproveCareNow and to help them access and utilize the IBD resources we create together.


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.


Connecting thousands of IBD patients and families

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.


Top Ten LOOP posts of 2020

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!


Engaging our IBD Community in the Time of COVID-19

In these turbulent times, with the ever-changing landscape of COVID-19 unfolding around us, the IBD team at Stanford Children’s Health has continued to prioritize community engagement; making the shift to offering virtual events and interactions that have provided their patients and families with uninterrupted clinical care, reliable sources of IBD-related information, and the ability to stay connected, ask questions and develop valuable coping skills to help navigate this unpredictable time successfully.

Their community engagement work was previously shared during our Fall Live Online Community Conference and will be highlighted again during our December 2 Virtual Community Conference (RSVP to join). Alison Kotzen RN, MSN, C-PNP, wrote the following about her team’s engagement efforts during the time of COVID-19.


What I Need, When It’s Needed – Communication and information seeking preferences of parents and patients are highly varied

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!


What I Need, When It’s Needed – Information on financial and insurance coverage issues

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.


What I Need, When It’s Needed – Information and resources to support psychosocial health

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.


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