ImproveCareNow Patients_&_families


Notes from the Field - Cori's Story

Cori DavisEngagement is one of those things that just seems to come naturally to some people. If you believe in something and are excited about it, how can you not share your enthusiasm with others? That’s all engagement is really; sharing stories, passions and successes, and working together toward a mission.

 

My name is Cori and this is my story of working with ImproveCareNow (ICN) – engaging many different people in an effort to improve care & health for kids with IBD.

 

 


Here is Wesley's Story...

Wesley before being diagnosed with Crohn's disease Wesley at five years old

Wesley was diagnosed with severe Crohn's disease last October during his fifth grade year; just after his 11th birthday. Though he has always been a happy child, Wesley began showing symptoms of this disease at least two years prior to diagnosis. He struggled with various symptoms, often having to stay home and cancel plans. He was unable to play sports with his friends, and often left places to rush home because he was sick. He was absolutely miserable. 


Christian's Journey: The Final Chapter

We speed down the pavement towards Grand Canyon National Park. In a few hours this road will be jammed for miles, but right now it’s empty. The trees stand motionless in our headlights and the air rushes into the car through the open windows and back out into the night. There is a young buck on the side of the road, and his presence only accentuates the stillness of the scenery. We pass the empty ranger station, the closed visitor center, and continue driving to the rim of the canyon. Clouds cover the stars like a nightshade, and only the moon penetrates the veil—it is dark.


Harnessing the power of data

AHRQ Issue Brief Colletti QuoteImproveCareNow is being highlighted by the Agency for Healthcare Research and Quality (AHRQ). AHRQ previously provided funding to help create enhancements of the ImproveCareNow registry, including automated population management, pre-visit planning, Quality Improvement performance and data quality reports. The efforts of physicians, improvers, parents and patients are also highlighted.


Christian's Journey: Part 4

It’s 3:00am, and we’re at a gas station ninety miles outside of the park. We’ve been up for twenty-two hours, and been on the road for sixteen of them. I pull out of the station and on to the open road. We roll the windows down and open the sunroof. The air hits my arms and my body shivers at the cold. I stick my left hand out the window and open my palm to the night—it keeps me awake.


It's time to Vote!


Nine patient-designed t-shirt conceptsCheck out these nine amazing designs!

 


Christian's Journey: Part 3

The interstate takes us through a Navajo reservation. It’s time to switch drivers, but there are no exits. Daniel slows from eighty and stops us on the wide shoulder next to dark grassland and a wire fence. I pull down the ceiling flap and open the mirror. My eyes are red. Sand from the dunes scratched them up, and the burn of the open windows left me squinting. When I rub them, little tears form at the corners and slide down my cheeks.


T-Shirt Design Contest


Spring 2015 T-Shirt Design PictureImproveCareNow (ICN) is sponsoring its first patient-designed t-shirt contest. Pediatric patients living with Crohn’s disease and ulcerative colitis (IBD) are encouraged to submit their designs through August 16. This is not limited to patients receiving care at participating ICN centers. Online public voting to select the winning design will take place between August 18 and 23. The winning design will be announced on Facebook, and by email. The winning design will be featured on an original ICN t-shirt that will be available for sale through September 4.


Christian's journey: Night Visions Part 1

I see the sign for “White Sands National Monument” from the passenger seat of the car. These milky white dunes are surrounded by government land used for missile tests and military operations, while the Parks Service protects a small patch in the middle. Entrance is free with our Annual Pass, and we cruise down the road of packed sand towards the far edge of the park. We see families sledding down the hills of sand on circular disks and couples eating sandwiches at park benches. We stop at the visitor center and buy a backcountry camping pass for one night.


Notes from the Field: Front Desk Staff Key to Patient Partnership

This experience was shared during an ImproveCareNow webinar by Cindy Gessouroun. I enjoyed her story so much, I asked her to share it here on LOOP. It's a simple, yet powerful example of how much we can accomplish together when we involve every person across the spectrum of care. I hope Cindy and Kim's story will be an inspiration, and that others will share their lessons about how best to identify and build relationships with patient and parent improvement partners!




The IBD team at Oklahoma University GI clinic was trying to identify parents to join our team. We asked providers for suggestions. We invited a few parents. We had an education day hoping to identify “interested’ parents at that event…however we continued to be without a parent partner. Kim, our front desk receptionist, attended her first Community Conference (CC) in Spring 2015. At our QI TEAM meeting after the CC she said, “I can find you parents!” She identified and invited 3 parents with whom she had formed a relationship throughout the years and who stood out to her as “potential involved partners”. After her phone calls she notified the research coordinator that ALL 3 parents said YES and showed up at the next meeting. Since then, they have stayed engaged and are slowly becoming partners with our TEAM. She had wonderful insight and her personal invitation must have been a good one!

 

 


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