LOOP Blog

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.

ImproveCareNow 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.

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.

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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.

The first three hours of the drive are easy. Daniel takes us out of government land, and we watch the sun set behind clouds that drop streaks of rain over the prairie. Although we had already been in the car for nearly ten hours before leaving the dunes, the adrenaline keeps us comfortable. I lean my seat back and put my feet on the dash until it is time to switch. My right hand grips the steering wheel and I rest my foot just above the brake in case my eighty mile-per-hour pace becomes too fast.

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.

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!

On a journey of 26.2 miles, the first step is the hardest. I shared the first chapter of Parker’s story in May. If you read it you know that the first step for Keri, Parker’s mom, was asking the question “how can I get more involved in his care?” From there Keri and I began building partnerships between her family, the UVM Children’s Hospital and ImproveCareNow. Every step we took was aimed at helping Keri cross the finish line with her relay team at the Vermont City Marathon to raise awareness of Crohn’s disease and funding to support our hospital.

Keri’s enthusiasm and drive to succeed is contagious. Not only is she a busy working mom of two boys, but she committed herself to running a relay in a marathon on top of it all. If you’ve followed ImproveCareNow, you may have already heard the network refer to the African proverb: “To go fast, go alone; to go far, go together.” That proverb feels particularly applicable in this case. This solo sprint, soon became a marathon we took together. It was through partnerships we formed that Keri and I were able to accomplish so much in a very short time.

This project was not only a collaboration between a parent and a care center, but also the ImproveCareNow Network and their Engagement Team. They helped us lace up our shoes and got us on the starting line. They provided us with the tools necessary to be successful in this journey. Keri had one thing in mind when she started out on this journey and that was to give back to the people that give so much to her son. “The 360 degree support we have received has been amazing. I wanted to support our local team and ICN team because they are the reason we are where we are today. If it was not for the constant caring and support of the entire network, it would be a very scary place to be. From the moment of diagnosis, they have been there every step of the way”.

When Keri asked to get more involved, we were basically starting from square one. There was no precedent for this kind of joint project. But we very quickly tapped into the collective experiences of the ImproveCareNow Network through their engagement team and almost immediately started our Booster campaign. Our campaign had many different purposes. Not only was it designed to raise funds for the UVM Children’s Hospital, and to raise awareness about IBD, but it was also to support Parker. “His "marathon" is much longer than mine, and thinking of him every step of the way, is one more step closer to finding a cure.  I hope that this is something we can continue to grow and have him become more of an influence as he gets older”.

We designed the tee-shirts and then had a mere three weeks to sell them prior to the marathon. Emails were sent, Facebook posts were shared, and Grandmothers were called; no corners were cut when it came to showing Parker how many people care about him and support him as he battles this disease. Within those three weeks we brought together a community. It started with a question and an idea; and together we brought it to life one step at a time (which, incidentally, is a lot like how the ImproveCareNow Network started.)

The marathon was a huge success! I was there, along with many other supporters! The whole atmosphere was one of excitement and inspiration. Keri looked like she was crushing Crohn’s and Colitis with every step she took towards the finish line (which she crossed with Parker himself!)

In just over a month, we were able to raise $750 dollars in donations to benefit the UVM Children’s Hospital as they continue to improve the care and health of children with IBD. Even though the finish line of this particular marathon has been crossed, this is just the beginning of an incredible and enduring partnership between a parent, a community, and a little boy named Parker.