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‘Global Bulletin Board’ Shows Promise in Child Health

Monday, January 01, 0001

A surprisingly easy and low-cost system of sharing treatment information improves dramatically the health of children with Crohn’s disease and ulcerative colitis, a study released today shows.

The initiative, called “ImproveCareNow,” functions as an online information network, allowing caregivers to systematically collect and share data together about the latest treatment methods and their effectiveness. Creation and use of this kind of “global bulletin board” has led to rapid improvements in the health of those children participating. The study reports a dramatic increase in the number of patients in remission.

Cincinnati Children’s Hospital Medical Center is one of the partners in the network. Based on the success of ImproveCareNow, researchers at Cincinnati Children’s recently were awarded a grant from the National Institutes of Health to expand the work.

“The system of providing care for the chronically ill is broken,” says Peter Margolis, MD, PhD, co-Principal Investigator of the new project. “What we aim to do … is to create a totally new system of providing care through widespread collaboration.”

Even though ImproveCareNow focuses on Crohn’s disease and ulcerative colitis, the model could easily be used for care with other chronic conditions, such as diabetes, heart disease and arthritis. And, it could do so at a fraction of the cost and more quickly than other approaches, like drug research and development.

"Until now, medical treatment has been largely a private affair, with patients and their caregivers working together as independent units. This initiative allows those in the health care system treating these diseases to compare notes frequently and to rapidly implement effective interventions," said Wallace Crandall, MD, Director, The Pediatric and Adolescent Center for Inflammatory Bowel Disease, Nationwide Children's Hospital, Columbus.

The preliminary data being released today at a meeting of pediatric specialists shows that under the ImproveCareNow program, the percentage of patients in remission from Crohn’s disease and ulcerative colitis has increased more than 20 percent in a 27-month period. Translating this success to the entire U.S. population of children and teens with these diseases means 10,000 more children could be symptom-free now.

“Because it’s hard to put new tools into practice, transforming health care will be virtually impossible without ways to innovate, test and spread what works. ImproveCareNow represents an entirely new model to speed discoveries into practice by harnessing the motivation and collective intelligence of the physicians, care teams and families. Health care reform depends on innovative programs like these that can produce improved outcomes for patients,” says Patrick Conway, MD, MPH, Chief Medical Officer, OS/ASPE, US Department of Health and Human Services.

It is estimated that about one million people in the United States have Crohn’s disease and ulcerative colitis, and 10 percent of them or 100,000 are children under the age of 18. Children with these diseases often suffer from abdominal pain, diarrhea, bloody stools, poor appetite, weight loss and poor growth, and must struggle to lead active lives. The diseases are due to a chronic inflammation of the intestinal tract.

ImproveCareNow was the pilot program of the American Board of Pediatrics aimed at enabling physicians to improve care delivery systems. ImproveCareNow is now supported by the participating sites, by the U.S. Agency for Health Care Policy and Research, Centers for Education and Research in Therapeutics. Future work will be supported, in part, by the recent prestigious transformative research grant Dr. Margolis was awarded from the National Institutes of Health.

In addition to reporting the results of their studies, ImproveCareNow is also premiering a short film by renowned filmmaker Jesse Dylan (son of Bob Dylan) that communicates the importance of collaborative innovation in health care.

For more information about ImproveCareNow and to view Mr. Dylan’s film, please visit: www.ImproveCareNow.org.

About Cincinnati Children’s

Cincinnati Children’s Hospital Medical Center is one of 10 children’s hospitals in the United States to make the Honor Roll in U.S. News and World Reports 2009-10 America’s Best Children’s Hospitals issue. It is #1 ranked for digestive disorders and is also highly ranked for its expertise in respiratory diseases, cancer, neonatal care, heart care, neurosurgery, diabetes, orthopedics, kidney disorders and urology. One of the three largest children’s hospitals in the U.S., Cincinnati Children’s is affiliated with the University of Cincinnati College of Medicine and is one of the top two recipients of pediatric research grants from the National Institutes of Health.

President Barack Obama in June 2009 cited Cincinnati Children’s as an “island of excellence” in health care. For its achievements in transforming health care, Cincinnati Children’s is one of six U.S. hospitals since 2002 to be awarded the American Hospital Association-McKesson Quest for Quality Prize for leadership and innovation in quality, safety and commitment to patient care. The hospital is a national and international referral center for complex cases. Additional information can be found at www.cincinnatichildrens.org.

About Improve Care Now

Improve Care Now is a not-for-profit alliance of health care providers (including physicians, researchers, nurses, quality improvement experts, statisticians, data processing experts and administrators), patients and families all dedicated to helping children and adolescents with Crohn’s disease and ulcerative colitis.

About Jesse Dylan

Jesse Dylan is a filmmaker, Creative Director and CEO of Form, a commercial production company, and its social media offshoot, FreeForm. He has created award-winning commercials for clients including Nike, Nintendo, Motorola, American Express, NFL, and MTV. Jesse's projects include the Emmy Award winning video YES WE CAN SONG, inspired by Barack Obama.

At the vanguard of the collective intelligence community, Jesse's work includes his non-profit medical website Lybba, whose mission is based on the premise that all the world's medical knowledge should be available free of charge in simple, easy-to-understand language. An active member of several organizations, Jesse is a fellow at Science Commons and serves on the board of Public Knowledge, a Washington, D.C. based public interest group working to defend citizens' rights in our emerging digital culture.