ImproveCareNow Ibd_awareness_week

Is awareness enough?

Jill Plevinsky Jill Plevinsky | Patient Advisory Council Chair

I've been raising awareness for Crohn's disease and ulcerative colitis ever since I can remember through fundraising, speaking engagements, social media, and more recently, academia. But always in the back of my head, I've wondered: is awareness enough?


Don't get me wrong, I definitely think it's a huge piece of the puzzle, but there are so many other things that we can do as patients to improve the lives of those with IBD while doctors and researchers search for a cure, and that's what this week is about to me. There's so much we can do.. we can volunteer at Camp Oasis, we can share our story and offer support to our readers and followers like Sara Ringer of Inflamed and Untamed, we can create social networking platforms like Crohnology to help patients better connect with one another online and in person, and most importantly, we can collaborate.


As the chair of the ImproveCareNow and C3N Project's Patient Advisory Council, I lead a group of young patients in collaborating with interventions being developed by the C3N Project - and everyday this week myself and our two Patient Scholars (Jennie David and Sami Kennedy) will be telling you about one of them. This is the first time we're telling everyone about what we're working on, and how young patients with IBD can help us.


So look for our posts all week on LOOP, and get involved!


[editor's note: this post was written by Jill to kick off #ibdweek and was originally shared on her personal blog.]

Emma: Your Waiting Room Ally

Today is the second day of Crohn's and Colitis Awareness Week. Throughout the week, Jill, Jennie, and I will be taking turns profiling some ImproveCareNow innovations we are incredibly excited to share with the community. I have the honor of introducing Emma, a promising initiative out of Oklahoma University (OU) Children's Hospital  to bridge the gap between tech-savvy adolescent patients and their gastroenterologists.

Who is Emma? Emma is the main character in a captivating iPad game of the same name, developed by OU students in collaboration with Dr. John Grunow. The Emma iPad app is designed to engage young patients in the waiting room, educate them on how to better manage their IBD, and give clinicians a preview into their patients' health and needs. Each session is customizable to a young patient's diagnosis and history.

Put an iPad with the Emma app in the hands of a young patient; she's a little bit anxious about her upcoming clinic visit, but is tech-savvy and somewhat disengaged in the waiting room. Emma transports her into a colorful, interactive four-realm world. It reads like a storybook at first, but soon launches into a variant on Angry Birds. The adventure begins in Port Vanguard, the portal to all four worlds. Soon, our patient is swiping her fingers across the touch screen, navigating Emma's rocket ship through hazardous terrain and "boosting" it when it starts to fall. It's familiar, it's engaging, it's competitive....and it's educational!

Emma App Screen Shot Welcome to Port Vanguard Screenshots from Emma app courtesy of Robert Free (co-developer)

Emma 2As our patient plays, Emma slips in multiple choice questions that test her comprehension on topics like nutrition and self-management, questions customized to her diagnosis. Emma also asks the patient to rank her quality of life and emotional health. Emma sends our patient's responses and a summary of  specific target areas of patient education which need work to her gastroenterologist. Her GI can then tailor her subsequent visit to address gaps in her understanding of her diagnosis and specific areas of concern. Emma is all about streamlining the clinic visit to make effective use of everyone's time. The app is currently being beta tested at OU Children's Hospital, where a select group of patients are helping Emma reach her full potential before hitting ImproveCareNow centers nationwide.

Why do I think Emma is so brilliant? Emma is an effective and clever use of technology, which has been designed especially for a tech-savvy generation. Emma engages patients in the waiting room while giving physicians a quick pre-visit snapshot of their condition. She turns waiting room downtime into a productive use of patient energy (and maybe even jitters!) to better the patient-physician dynamic. I met Emma this past summer during a Patient Advisory Council beta test opportunity and was immediately impressed. As I transition into adult care, it's exciting to watch technology improve the pediatric clinic environment I lovingly leave behind. Emma is innovating the clinical experience, starting right in the waiting room. That's a real game-changer.

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