Historically, physicians and health care providers have worked in small teams within a single medical facility, and have received continuing education on an individual basis. While the vast majority of them are motivated professionals working hard to provide the best patient care possible, they have not had tools and systems that allowed them to carefully track and compare results across a national group of thousands of patients or to share their experiences, results, successes and ideas among a large group of health care professionals representing many medical institutions.

Suspecting that having these capabilities would lead to the discovery of new and improved methods of care, a few innovative doctors obtained funding from the American Board of Pediatrics in 2004 to start a “research and improvement network”. Initially, this group focused on studying variations in care of Crohn’s disease in children and teens.

Opportunities for Improvement

The study demonstrated that there were a lot of ways that care could be improved. Believing that these improvements would lead to better patient health, the group invited doctors to form an alliance to study and improve the care they were providing for Crohn’s Disease and ulcerative colitis (together, known as inflammatory bowel diseases, or IBD for short). These physicians agreed to record information from all patient visits, carefully measure and record the results from the treatment they provided, apply scientific analysis to this data, share the results among all of the members of the alliance, and together define and use a Model IBD Care Guideline that would represent the most effective care and treatments for these diseases.

In January 2007, these doctors, and the eight medical institutions in which they practiced, launched this alliance as the PIBDNet Trailblazer Improvement Collaborative, with funding from the participating institutions and a modest amount of federal grant funding and charitable contributions. As part of their goals, this team committed to openly sharing everything that it learns to benefit patients everywhere.

An Open Invitation

With 16 medical institutions and more than 2,200 patients now participating, the alliance continues to grow. However, with as many as 100,000 children still suffering with ulcerative colitis and Crohn’s Disease, there is still much work to be done. In an effort to demonstrate the alliance’s commitment to improving patient health now, and to inviting more patients, families and friends to participate as supporters (in addition to being patients and families), the alliance changed its name to Improve Care Now in March, 2009.

We invite you to join with us today to help move this work forward, and to help pioneer a model for health improvement that we believe will not only improve health for children and teens with Crohn’s disease and ulcerative colitis now, but will one day soon also help millions of children with many different chronic diseases.