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.

Come the end of the year, the Crohn’s and Colitis Foundation of America (CCFA) organizes Advances in IBD, a medical conference dedicated to topics in IBD research and care. The foremost clinically-oriented IBD meeting in the US, this conference attracts both adult and pediatric clinicians.

Per tradition, Advances in 2016 is held in Florida. And, that is how I found myself in the Magic Kingdom, rubbing shoulders not only with Mickey and Minnie but with the biggest names in IBD. As the parent of a 12 year old child living with Crohn’s disease, I was attending in the hopes of moving beyond the ‘IBD 101’ webinars and the usual CCFA-supported patient educational sessions to gain a higher-level understanding of the issues at the cutting edge of IBD management. If knowledge equals power, I needed to level-up and Advances seemed like the perfect place to do so. Unfortunately, I learned there is no clear path for parents or patients to register for this conference (co-production comes slowly in medicine). But, after some discussion with the good folks at CCFA, I was able to sign-on as a physician (having gone to medical school does come in handy), even though I am neither a gastroenterologist nor an IBD specialist. So, it was as a parent-mole that I sat among the sea of clinicians, feeling a bit like an imposter, and jotting down what I found of greatest interest from the perspective of a person affected directly by IBD. What follows are these observations – admittedly filtered by my personal experiences as #DadofkidwithIBD

Studies of transition readiness in young adults with Crohn’s disease and ulcerative colitis (also known as Inflammatory Bowel Disease or IBD) suggest that patients often lack disease-specific knowledge and are not confident in their ability to manage their disease. This can lead to worsening disease activity and increased healthcare utilization.

Preparing young patients with IBD to transition from pediatric to adult care, and actively transferring care to the adult care team, is crucial to ensuring the continued effective management of IBD. Within ImproveCareNow, the Transition Task Force is focusing on transition and transfer of care across the network.

In August funding was announced for a study examining the effectiveness of the specific carbohydrate diet (SCD) in reducing symptoms in pediatric patients with Crohn’s disease and ulcerative colitis using a combination of “N of 1” methods and mHealth technology. This study has been named by the ImproveCareNow community.

The COMBINE Study is now officially enrolling eligible patient participants. COMBINE is a research study looking to answer an important question: For kids with Crohn’s disease who need to start an anti-TNF medication (Remicade or Humira), does adding another medication called Methotrexate lead to better outcomes?

Perianal fistulas are a common complication of Crohn’s disease in children. At Digestive Diseases Week (DDW) 2016 Dr. Jeremy Adler (@jeremyadlermd) presented research investigating whether low ultraviolet light (UV) exposure is associated with risk of perianal disease in pediatric patients with Crohn’s disease. This research builds on Dr. Adler’s investigation of instances of perianal disease accepted for publication in J Pediatr Gastroenterol Nutr 2016 (in press).

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).

Patient-Centered Outcomes Research Institute Funds Project as a Demonstration of PCORnet

A team from ImproveCareNow led by Heather Kaplan, MD, MSCE and Lisa Opipari-Arrigan, PhD will take part in a $2.5 million research project in partnership with the Health eHeart Alliance, to conduct a study using an innovative combination of “N-of-1” study designs and mobile health technology. ImproveCareNow will focus on using a series of N-of-1 studies to understand the effectiveness of the specific carbohydrate diet (SCD) in reducing symptoms in patients with Crohn’s disease and ulcerative colitis (also known as Inflammatory Bowel Disease or IBD) as compared to a liberalized SCD and unrestricted diet.