Nemours Receives Joint Grant to Improve Patient Outcomes

Jacksonville, Fla. - Nemours, one of the nation’s premier pediatric health systems, was recently included as part of a multi-institutional group that received a $12 million grant from the Agency for Healthcare Research and Quality. With the grant, researchers will create a first-of-its-kind system permitting bedside data entry into disease registries to provide doctors and researchers from around the world real-time access to information on pediatric inflammatory bowel disease (IBD) symptoms, treatments and outcomes for thousands of patient cases.

This system will enable real-time adherence to best practices for past and present cases, providing a searchable database – never before possible – containing information on which procedures are having the greatest positive impacts on patient health. This announcement comes on the heels of Nemours winning the prestigious 2010 Healthcare Information and Management Systems Society (HIMSS) Davies Organizational Award of Excellence for the effective use of health information technology to improve the safety and quality of patient care.

“This project represents the future of pediatric health care, turning data locked away in medical records into knowledge that is available worldwide,” says David Milov, a pediatric gastroenterologist and chief medical information officer at Nemours. “This will not only encourage best practices but more importantly, improve health outcomes for children with rare and chronic conditions. We are creating the ability to make significant and meaningful change in the practice of medicine to help alleviate suffering for children.”

The grant investigators that created the proposal include Nemours, Cincinnati Children’s Hospital Medical Center, Children’s Hospital of Philadelphia, The Children’s Hospital in Denver, University of North Carolina, and Nationwide Children's Hospital, Columbus and the funding was awarded by the federal Agency for Healthcare Research and Quality, which supports research that leads to more informed decisions and improves the quality of health care services.

This project builds on existing research from last year’s $8 million “transformative” grant from the National Institutes of Health to create a network of patients, clinicians and researchers to improve management of chronic care. There are nearly 30 different sites taking care of thousands of patients that will participate in this collaborative network.

Instead of waiting months or years for peer-reviewed papers to be published on outcomes involving small numbers of patients, the new registry will allow information to flow directly from patients’ electronic medical records into the database. This will create a real-time body of shared knowledge that can be accessed and reviewed immediately, making best practices and corresponding outcomes available to clinicians, researchers, hospitals, clinics, administrators, policymakers, and patients. 

Patients with any chronic illness could eventually benefit from this work, however, this grant focuses on enhancing an already-successful collaborative network (ImproveCareNow) targeted at inflammatory bowel disease (IBD), a condition that affects around 100,000 children in the United States. The registry is the next evolution of a successful four-year effort among caregivers and researchers who have been sharing information on IBD through the ImproveCareNow network of physicians. By sharing information through this network, doctors have been able to improve remission rates for patients with IBD by as much as 20 percentage points over the past three years. As of June 30, 2010, 71 percent of the patients cared for within the collaborative were in remission.

Approximately one million people in the United States suffer from Crohn’s disease and ulcerative colitis that are collectively referred to as inflammatory bowel disease, and 10 percent of them, or 100,000, are children under the age of 18. Children with IBD often suffer from abdominal pain, diarrhea, bloody stools, weight loss and delayed growth, and must struggle to lead active lives. The diseases that cause IBD are a result of chronic inflammation of the intestinal tract. 

While this particular grant focuses on the ImproveCareNow network and IBD, it also serves as a pilot for implementation of a nationwide consortium of academic health centers that intend to share electronic health record and related clinical data to improve children’s healthcare.