ImproveCareNow Jennie_david


Episode 26 of the imPACt podcast - IBD and Medical Trauma

Join me (Autumn), Henry & Samantha for a conversation about medical trauma in IBD with ICN SWAP (Social Workers & Psychologists) group members Dr. Jennie David (licensed clinical pediatric IBD psychologist) and Dr. Alexandra Fuss. We are honored to have them join us to discuss this important topic.


Exploring Fatigue in Pediatric IBD

Pediatric patients with IBD can have challenges with fatigue (feeling tired a lot of the time) and difficulties with sleep. While fatigue and sleep are known to be important factors in supporting optimal psychosocial and medical outcomes in pediatric IBD, it is unknown how these topics are talked about in IBD care with patients.

A new research project aims to learn more about Sleep & Fatigue in Pediatric IBD.


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.


Episode 9 of the imPACt podcast - IBD Psychology

It was definitely a fascinating experience making this podcast episode where my fellow PAC member, Maha and I interviewed Dr. Jennie David. I especially enjoyed learning more about her profession and remember thinking that I didn’t even know IBD Psychology was its own subfield.



Top Ten LOOP Posts of 2018

LOOP is making an impression on the IBD community!

We enter December 2018 with 60 new posts, shared by 40 ImproveCareNow community members! And 27 people posted for the very first time in 2018. Posts covered topics like: IBD research, mental health, new PAC member intros, ICN event updates, what I wish you knew, and many honest accounts of life with IBD.

We are thankful for each and every one of these stories. Here are the top 10, most viewed, posts of 2018!


A Guide to Gutsy Living

One of the greatest gifts I have ever received is a small pin that’s likely worth about $5. I imagine that most people who look at the pin, proudly affixed to the collar of the lab coat I wear during clinical placements, assume it’s a red flower. But it’s not a pin of a red flower. It’s a pin of a stoma.


Not Sorry

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As a patient with a chronic illness, I have become well-versed at shedding my humanity and emotions and leaving them outside the clinic room, like taking off my shoes when coming home. We are made to believe, through experience and myth, that doctors are only interested in data. I am so practiced in this belief – or perhaps in that fear – that I can recite my diagnostic and treatment history in full, like rattling off a monologue with the medicalized Latin words becoming normalized. 


Engaging Children as Special Populations

I was invited to a PCORnet talk on Building Trustworthiness in late March 2016 where I was asked to discuss children as a special population. My talk, which I’ve shared below, examines how ImproveCareNow engaged pediatric patients in a way that moved beyond the token role often lamely offered to children, and the powerful ability for patients to be involved in and generate meaningful research based on questions important to us as a cohort.

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