The goal of medical research is to improve the lives of patients. ImproveCareNow intends to make sure the research they support truly represents patient and family perspectives. As part of funding from the Patient Centered Outcomes Research Institute (PCORI) and the US Agency for Healthcare Research and Quality (AHRQ), ImproveCareNow has partnered with leading healthcare researchers from Children's Hospital of Philadelphia (CHOP) to learn how to involve everyone in the IBD community in setting a new direction for learning. Together with a diverse team of volunteers, including patients & parents, the CHOP project team has developed a website called Patient Priorities. It is currently being used to share surveys where you can tell ImproveCareNow about your priorities and what questions you have about IBD.   

 

 

 

The IBD community has already ranked a series of Patient Reported Outcomes (PROs) using the Patient Priorities website. The goal of ranking the PROs was to develop a list of questions that will help patients and clinicians understand and learn from how patients view their own health.

PROs are another way we are outsmarting IBD together!

Next up for PROs - a group of 13 ImproveCareNow centers will begin asking patients with IBD questions about: Life Satisfaction, Global Health, Pain Interference, Fatigue, Psychological Stress, etc. when they come in for a visit. As participating centers in the ImproveCareNow Network, they already know how to monitor the health of their patients with IBD. As they begin collecting PROs they'll use these skills to watch the impact PROs have on care and health. One hope is a greater improvement in remission rate.

ImproveCareNow has the largest and fastest-growing pediatric IBD health registry in the world (ICN2). In a comparative-effectiveness study called Real-World Clinical and Comparative Effectiveness of Infliximab in Pediatric Crohn's Disease, a team of researchers showed us the power of ICN2 to improve health by quickly, accurately and inexpensively recreating the REACH study that looked at how IBD therapies affect patients.

Why are registries like ICN2 so important and so powerful? Because research into diseases like pediatric IBD is actually pretty difficult. There are a small number of patients, so it's hard to find people to participate in studies. That means learning is slow and expensive. ICN2 is a solution because it securely houses IBD stories from 18,000 patients, and information from over 100,000 patient visits. And with funding from AHRQ and PCORI there are enhancements (like PROs) being added that will make learning that much more comprehensive.

The ImproveCareNow Research Committee is accepting proposals to learn from the ICN2 registry. To date, the committee has received 18 proposals; seven have been approved and six are under review. We will be sharing updates on studies as they progress, like the 'Racial Disparity in Pediatric IBD' study that is underway right now.