LOOP Blog

My name is Sydney, and I'm 17 years old. I go to St. Pius X Catholic High School in Atlanta, Georgia. I was diagnosed with Crohn's disease just this March. I am a triplet, with two triplet sisters, and I also have a younger brother.

In ImproveCareNow there is a saying (there are many, actually) that goes: “we’re building the bike as we’re riding it.” This feels especially true with research co-production because as our team has been working to create the infrastructure, tools and support necessary for research co—production to happen in ImproveCareNow, we’re aware that it’s actually already happening.

Almost a month ago, my life as a high school student came to an end - no more waking up at 6am everyday, no more school dances, no more crowded hallways, and no more rules that as a person with Crohn’s disease were really hard to follow. Rules like “ask before you leave to use the restroom,” “no water bottles in class,” and “no food in the classroom,” all came to an end.

Rules aside, what did high school teach me, besides how to solve overly-complicated matrices and what taxes are?

I learned...

Twice-yearly ImproveCareNow Virtual Community Conferences seek to connect and grow our widely distributed and diverse community in pursuit of our mission to improve health and care for all children and youth with Crohn’s disease and ulcerative colitis. We invite all people wishing to learn more about and get involved with ImproveCareNow to join us on May 17 between 4 and 8pm ET for our Spring 2017 Virtual Community Conference. Read more to see the agenda for this event. 

RSVP now and join our Spring 2017 Virtual Community Conference

Dear Friends,

It’s fair to say that we’re still a bit speechless thinking about the impact of the presence, participation, and indeed leadership of so many people, including parents, patients, clinicians, researchers and improvers at our Community Conference. Over 300 people took time away from family, work, and day-to-day life, and dove right in. Together we learned, we taught, and most of all, we inspired each other all to keep doing better. Thank you from the bottom of our hearts for being a part of this community and helping us celebrate our first decade!

ImproveCareNow Community Conferences happen twice a year. While the community works together across the miles throughout the year, these conferences provide an in-person opportunity to 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 one week we will welcome over 300 patients, parents, clinicians, researchers, improvers, collaborators, and supporters to the Spring 2017 Community Conference in Dallas, TX and we hope you’ll join us too.

Dear Younger Me,

I know you're scared and this past week in the hospital has not been all that great. All the tests and doctors are so new to you. The doctors said you have Crohn’s disease. It’s going to be okay, I promise.

I wish I could tell you these next few years will be easy, but they won't. You're going to go through some pretty tough stuff that many kids your age will have a hard time relating to. Most won't even understand it and that's okay.

ImproveCareNow centers work hard to provide excellent care for pediatric patients and their families. The seamless sharing of clinical tools and approaches among participating centers is a vital part of their success. Now, we aim to codesign more tools & materials to share with and support patients and families in their day-to-day lives.

It’s been a busy week in the ImproveCareNow community, and it’s not over yet. As one of the “official” leaders of this community, I’m sitting back for a few minutes and reflecting (as I often do) on how many people from across this community have become contributors and leaders in their own right; collaborating across roles and across the miles.  Not every week looks the same in ImproveCareNow. Some weeks, our momentum slows a bit and centers look inward and focus on their own vital improvement activities. But this is one of those weeks when you see the power of community fluctuate not just day-by-day, but hour-to-hour and down to the moment. In these moments, you realize, you are witnessing a truly incredible burst of collective energy. And nearly all of this work is happening virtually—by phone and online—with participants from across the US and beyond.

ImproveCareNow believes in doing research with parents/patients, not for or about them. The practice is called Research Co-Production and it means that parents/patients are not only participants in research, but also that they are team members involved in coming up with research questions, designing research studies, running the studies and sharing the findings. We believe that co-producing research can make it more relevant and improve the quality.

Traditionally, research has not been done this way. So it’s up to us to design a system that supports this type of partnership. Here’s how we’re building opportunities for research co-production in ImproveCareNow.