Pediatric analysis: Information-driven care enhancing lives of children with bowel illness

I‘ve just returned from an out-of-town meeting that has left me reeling in excitement about heath-care-improvement science.

As a new member of the ImproveCareNow board of directors, I learned firsthand about the remarkable outcome of an effort to increase the quality of care for children with inflammatory bowel disease using the techniques and strategies of improvement science.

IBD refers to a group of chronic disorders of the digestive tract. Bouts of intestinal inflammation cause abdominal pain, bleeding, diarrhea, weight loss and a host of other difficulties. Although regular health care and medication usually control the inflammation, IBD is considered a lifelong disease with periods of relapse and remission.

ImproveCareNow is a national community of physicians, parents, patients and other experts, with the goal of improving the health of children with IBD using an improvement science approach. A key principle is application of rapid cycles of interventions, measurement and then changes based on the results of the interventions.

Almost 1,000 pediatric gastrointestinal specialists participate. Working at more than 100 care centers, including Nationwide Children’s Hospital, these doctors and their teams follow mutually agreed-upon treatment and monitoring protocols for children with IBD based on the latest scientific evidence. Parents and families are key partners.

An important part of the process is extensive, standardized data collection at all health-care visits. Performance is measured, compared and relentlessly shared among practitioners and centers. Comparison among peers definitely gets the competitive juices going — no one wants to be a low performer. In regular face-to-face meetings, electronic reports and conference calls, best practices are shared so that children with IBD have fewer relapses and longer remissions.

More than 29,000 children with IBD are enrolled in ImproveCareNow. Measurements have been taken from 225,000 patient visits resulting in millions of data points. These data are a rich source of information not only for improvement science purposes, but also for traditional hypothesis-driven research and innovative clinical trial planning, as new drugs and biological therapies emerge.

ImproveCareNow’s success is remarkable — arguably the most-effective improvement science initiative in pediatric health care today. Patients treated at the best-performing hospitals have a remission rate of more than 80 percent. Ten years ago, it was about 55 percent. Satisfactory growth occurs in 93 percent of children, and 96 percent are not taking side-effect-producing steroid medications — both major improvements.

In recent years, quality and safety increasingly have been front and center for the health-care industry. Virtually any disease and any process in health care can be made better through the techniques and principles of improvement science. Although health care is behind other industries such as manufacturing and commercial airlines, efforts such as ImproveCareNow are beginning to move the needle in the right direction for hundreds of diseases and care processes.

As a research leader most familiar with traditional sciences such as epidemiology, laboratory research and clinical trials, it is exciting for me to see how quality-improvement methods can powerfully improve care in the absence of new medications or invasive new technologies. It also is gratifying to see how quality-improvement science has further expanded the growing array of exciting career options for physicians, nurses and other professionals who strive for better health for children and families.

Dr. John Barnard is president of the Research Institute at Nationwide Children‘s Hospital.

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