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.
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, OH.
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
It is estimated that about one million people in the United States have Crohn’s disease and ulcerative colitis, and 10% 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, and recently won a prestigious transformative research grant from the National Institutes of Health aimed at spawning innovations in chronic illness care.
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 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 been behind some of the most successful campaigns in commercial television, print, and interactive advertising. He has created award-winning commercials for clients including Nike, Nintendo, Motorola, American Express, NFL, and MTV. Most recently Jesse's work has been devoted to telling the stories of innovative projects, people, and organizations worldwide. Jesse's projects include the Emmy Award winning video YES WE CAN SONG, inspired by Barack Obama. Additionally, he is creating media projects for a diverse group of organizations including Bono's non-profit ONE, (RED), the campaign fighting AIDS in Africa, and KIVA, a non-profit, micro-lending organization dedicated to alleviating poverty. Jesse also is an active member of TED (Technology Entertainment Design) where he is creating marketing materials and short films in support of TED Prize Winners.
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.
Hospitals Participating In ImproveCareNow
-Advocate Lutheran General Children’s Hospital, Chicago, IL
-Arkansas Children’s Hospital, Little Rock, AR
-American Family Children’s Hospital, Madison, WI
-Barbara Bush Children’s Hospital at Maine Medical Center, Portland, ME
-Children’s Healthcare of Atlanta, Atlanta, GA
-Children’s Hospital at OU Medical Center, Oklahoma City, OK
-Children’s Hospital of Philadelphia, Philadelphia, PA
-Cincinnati Children’s Hospital Medical Center, Cincinnati, OH
-Inova Fairfax Hospital for Children, Falls Church, VA
-Massachusetts General Hospital for Children, Boston, MA
-Nationwide Children’s Hospital, Columbus, OH
-Nemours/Alfred I. duPont Hospital for Children, Wilmington, DE
-Oakland Children’s Hospital, Oakland, CA
-Pediatric Gastroenterology and Nutrition Associates, Las Vegas, NV
-Texas Children’s Hospital, Houston, TX
-University of Michigan Medical Center, Ann Arbor, MI
-University of North Carolina, Chapel Hill, NC
-UT Southwestern Medical Center at Dallas, Children’s / Medical Center in Dallas, Dallas, TX
-Vermont Children’s Hospital at Fletcher Allen Health Care, University of Vermont, Burlington, VT