New Disease Registry Provides Real-time Information to Improve Patient Outcomes

Date Posted: October 22, 2010

October 22, 2010 - What if physicians didn’t have to wait for the latest medical research and disease tracking statistics to be published and disseminated through traditional channels? What if they could instead find real-time information online, compare cases and learn of successes from other medical facilities, and react quickly with the proper treatments?

This dream scenario might be coming closer to reality, thanks to recent funding that will expand a successful disease registry centered on inflammatory bowel disease (IFB) that could eventually cover a wide range of conditions.

Richard Colletti, M.D.
Richard Colletti, M.D., director of Improve Care Now, believes the new $12 million grant recognizes the pilot project's remarkable results.

For many children with IFB, including Crohn's disease and ulcerative colitis, there has been a significant jump in remission.

This positive trend is largely coming from the work done at 29 facilities across the United States, and one new participant hospital in London: a collaborative called Improve Care Now, which has just won a $12-million-dollar federal grant to expand and enhance their successful project.

The doctors, nurses and other clinicians who work at these facilities have built a database of knowledge that offers almost real-time data to fellow participants, including information about new and existing treatment protocols, and the results of those treatments.

This information is helping healthcare professionals adjust and improve their response to these diseases, and most importantly, improve patient outcomes.

Genesis of an innovative program

The pilot program was launched in 2007 by teams at the University of Vermont and the Cincinnati Children's Hospital Medical Center (CCHMC), with the goal of providing a system that would allow clinicians to track and compare results, share experiences and ideas, and promote new and improved methods of care.

Improve Care Now is focused on inflammatory bowel disease, which affects about 1 million Americans, 100,000 of which are children under the age of 18. There is the potential, however, to use this type of network for other conditions, as well.

Focusing on the system

"The care that a patient gets is not just dependent on how good the doctor is, or how much the doctor cares," said Richard Colletti, M.D., director of the program. "The care is dependent upon the system that the doctor works in."

Pam Morgan, RN, CCHMC
Pam Morgan, RN, CCHMC, says that the registry helps participants share in the great work going on at different medical centers.

Bringing together current knowledge from the field helps prevent the “reinventing of the wheel” that too often slows down the process of improvement.

"You're so isolated within your institution," said Pam Morgan, RN, from CCHMC, "that it's difficult to figure out what great work is going on [out there] and how to move it forward."

Too often, caregivers and patients are independent units, trying different approaches and protocols. Improve Care Now will change that, according to Wallace Crandall, M.D., director of the Center for Pediatric and Adolescent Inflammatory Bowel Disease at Nationwide Children's Hospital in Columbus, Ohio. The program will “allow those in the healthcare system [who are] treating these diseases to compare notes frequently and to rapidly implement effective interventions.”

The work begins …

For the first three years of this pilot program, participating physicians and nurses have been entering information from all patient visits and carefully recording results; this has led to the creation of the initial database.

Results have been impressive: the rate of remission for patients with ulcerative colitis has increased 12 percent among this patient population; pediatric patients with Crohn's have seen their remission rates jump from 49 percent to 66 percent since the network began.

As of June 30, 2010, an impressive 71 percent of all the patients cared for by the collaborative were in remission. And all this improvement has come not from new drugs or expensive interventions, but by sharing and better utilizing the information and experience that's already out there.

Additionally, the system includes detailed nutritional status statistics, diagnostic testing and evaluation data that can improve the use of immunomodulator and other medications, as well as the latest, innovative quality improvement methods being successfully used in the field.

According to the American Board of Pediatrics, Improve Care Now offers the largest database available for effective treatment of pediatric IBD.

Build it and they will come

Keith Marsolo, Ph.D.
Keith Marsolo, Ph.D., leads the technology team for Improve Care Now, which allows data sharing across different locations and platforms.

Building a technology-based network that can work at many different locations and facilities for many different users does have its challenges, but they are being ably addressed by Keith Masolo, Ph.D., director of software development and data warehouse at CCHMC, and his team.

With the new grant, the upcoming expansion will include "leveraging the electronic medical record for data collection," said Marsolo, "then feeding that data into an [existing] informatics platform called i2b2."

i2b2 (Informatics for Integrating Biology and Bedside) features a broad-base of research data, analysis tools and training materials.

Users will be able to log-in and use a query tool that allows them to drag and drop search terms from a list, run reports based on these terms, and search patient registries.

Getting all the participating sites to talk to one another effectively requires some groundwork; there are different platforms and different IT systems in place. For example, "if your site already has an electronic medical record," Marsolo explained, "we can set that up to capture the data that Improve Care Now is focused on—then a report can be generated for that patient at your facility and it will be sent to the [main] registry."

For sites that don't have this in place, "we'll be able to implement a pre-clinic planning report," which will get that site linked up to the main database in a structured way.

Standardizing the data that is collected and expanding search and reporting capabilities are additional goals.

Marsolo continued: "A nurse will be able to log-in and run a cohort query on any data they want: medications, outcomes, phenotype information—and see what the patient population looks like."

All this technology is designed to support the collaborative’s main goal: quality improvement. "The technology enables everyone to move faster," said Marsolo. "If one site is doing well, we can learn from them. The reports that are generated allow [staff] to respond and adapt more quickly."

Being user-friendly is also important. "We want to create as clean an interface as possible, so people want to use [the system] and can easily find what they're looking for."

Advancing the trend toward electronic medical records

Improve Care Now is part of a trend already underway to move the U.S. healthcare system toward electronic medical records, and this alliance is a prime example of the benefit of such a move.

The planned expansion is slated to come online in stages over the next three years, according to principal investigator for the project, John Hutton, M.D., who is director of biomedical informatics at CCHMC.

"IBD is a relatively uncommon condition so no center has enough patients to determine the best care practices," said Hutton. "Our hope is that this project will demonstrate this is a dynamic, effective way to identify the most successful treatment options and get them into broader practice much faster," and eventually include databases for other diseases and conditions.

Nurses, doctors and a growing list of participating facilities will continue to expand and build on these current successes.