LOOP Blog

When someone in the healthcare world says she is a doctor, a nurse or medical assistant, her role is immediately understood. We have an ingrained understanding of what these roles encompass. When I tell others what I do, I’m usually greeted with looks of confusion.

ImproveCareNow Community Conferences happen twice a year. Together we work on developing and spreading quality improvement (QI) and research skills and approaches; fueling our Network's use of data to drive and evaluate QI efforts; and developing partnerships that will lead to improved care processes and outcomes in pediatric IBD.

In just two days we will welcome over 300 patients, parents, clinicians, researchers, improvers, collaborators, and supporters to the Fall 2016 Community Conference in Chicago, IL and we hope you’ll join us too. Here’s how:

Jeff Savarino and the team at MassGeneral Hospital for Children (MGHfC) are improving the clinical remission rate for kids with Crohn's disease and ulcerative colitis (also known as Inflammatory Bowel Disease or IBD).

There are so many similarities to travel and journeys in health care improvement. As an improver and innovator, as well as an avid traveler, it’s one of the appeals of this work. I love the big ideas—thinking about new routes to take together, throwing caution to the wind at times, and coming up with new approaches to reaching the destination. But I also understand the importance of a rigorous, time-tested QI process—a road-map if you will—to ground these adventures. So I wholeheartedly embrace the use of measurable goals, especially the 90-day variety. 90-day goals are the way that ImproveCareNow center teams shape and quantify their improvement ambitions—they help them set the course, assess whether they are on the right path, and finally, whether they have arrived in the right place.

I spent many years thinking I was the only kid with Crohn’s Disease in my area. 

Two years ago, in the summer of 2014, my once vibrant active little boy, Parker was very ill. Losing weight before our eyes. Every day, he was getting worse and we were in and out of the pediatrician's office and emergency room, until finally, the on call pediatrician suspected that he had Crohn's. He sent us to the Children's Hospital where we were introduced to the Pediatric GI and Surgery team at The University of Vermont. Two days later Parker had an Endoscopy and Colonoscopy, and we were given the diagnosis. 

It is human nature to want to learn and question the world around us. It is natural for us to seek innovation, invent new things and express new theories. This is how we improve and how we have achieved the advances we have today. Nothing is wrong with this innate desire to learn and be curious, except when you’re the one that’s being questioned and or are the object of someone’s curiosity.

I was diagnosed with Crohn’s in 1984. Very little was known about IBD. Hospitals were isolated...no one shared information. Now over 30 years later....I never thought I would be a part of a collaborative network that's main goal is to share information and data. When our son was diagnosed with Crohn's disease....I felt like it was time to step up and have a voice.

Adalimumab (ADA) is an important biologic drug used in the treatment of pediatric Crohn’s disease. In May at Digestive Disease Week 2016, a meeting of gastroenterologists from around the world, Dr. Keith Benkov presented research examining variation in the use of Adalimumab monotherapy and concomitant therapy with an immunomodulator in pediatric Crohn’s disease. The cross-sectional analysis was completed using data from the ImproveCareNow Registry (known as “ICN2”).

Click the poster image for a larger view

PAC co-chairs, Bianca and Alex, are on the blog today to recap some of the amazing things this group of patient advocates has accomplished this summer. The PAC was created in 2011 with the intent to bring IBD patient advocates together to change IBD care for and with the ImproveCareNow Network. Over the years the PAC has evolved and grown and we've highlighted this in our new timeline. This summer the PAC made strides towards becoming a bigger, more engaged and effective council and we're excited to share how we're doing it and what it means for the future.