When I joined ImproveCareNow about 1.5 years ago, research was one of the primary ways I wanted to be involved. I’ve lived with Crohn’s disease for almost 11 years, and for much of that time research felt like something that happened behind the scenes and was entirely out of my realm of influence. Often research is done to or about patients and families, but very rarely is it done with them. Engaging patients and families in research can not only enhance the research itself, but it can also help patients and families feel as though they have a stake in the discovery of new knowledge about IBD.

Twice-yearly ImproveCareNow Virtual Community Conferences seek to connect and grow our widely distributed and diverse community in pursuit of our purpose 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 June 13 between 4:30 and 8pm ET for our Spring 2018 Virtual Community Conference. Read more to see the agenda for this event. 

The PRODUCE Study is now officially enrolling eligible participants. Four ImproveCareNow centers, including Seattle Children’s Hospital, Stanford Children's Health, Nemours Children's Health System - Wilmington, and Children’s Mercy are actively recruiting participants. The remaining seven centers should be recruiting participants by May.

One of the greatest gifts I have ever received is a small pin that’s likely worth about $5. I imagine that most people who look at the pin, proudly affixed to the collar of the lab coat I wear during clinical placements, assume it’s a red flower. But it’s not a pin of a red flower. It’s a pin of a stoma.

My name is Derek and my daughter, Caitlyn, was diagnosed with Crohn’s disease at age 9. At that time, I immersed myself in the medical literature and sought to build good connections with like-minded parents through organizations like the Crohn’s & Colitis Foundation and, ultimately, ImproveCareNow. Through ImproveCareNow, I have joined a community of patients, parents and scholars engaged in understanding, managing and treating pediatric IBD. This year, I was pleased to be offered the opportunity to engage at a deeper level with the ICN community, by serving as lead for the Parent Working Group Research Subcommittee for ImproveCareNow.

I'm Joshua – a 21-year-old Stanford senior. I was diagnosed with Crohn's in the 7th grade and have been, for the most part, in remission since then (I've been on Remicade pretty much continuously). Most people don't know that I can roll my stomach – I'm a pretty open book, so that's all I got!

Since I've only experienced Crohn's-related symptoms 2-3 times in my life, whenever I have any GI symptoms or problems, I always get anxious that "the Crohn's has come back." It can be mentally exhausting at times, but luckily school keeps me busy and distracted.

LOOP is making an impression on the IBD community! In 2017 LOOP was recognized twice as a top blog for Crohn’s disease – 19 of 100 by Feedspot and Top 10 by Medical News Today! This is a direct result of the variety and quality of stories and perspectives shared by so many members of the ImproveCareNow community!

In 2017, 50 posts were published by 36 ICN community members! And 18 people posted for the very first time during the year. Posts covered topics like: IBD research, new PAC member intros, ICN event updates, what I wish you knew, and many open & honest accounts of life with IBD.

We are thankful for each and every one of these stories. Here are the top 10, most viewed, LOOP posts of 2017!

The ImproveCareNow Registry is a treasure trove of information about patients living with IBD. But, data, like Amazon gift cards, are worthless unless used. And it takes some intrepid, or at least good-with-numbers, Indiana Jones-type researchers to plunge into the depths of the jumble of figures – to put the data to work to answer questions.

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.

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.