Study Teams with Carolina Data Warehouse to Help Patients with COPD

UNC has partnered with five other clinical centers to create a national data hub for investigating what tests and treatments are most effective for patients with Chronic Obstructive Pulmonary Disease, or COPD. The national effort, called COPD Outcomes-based Network for Clinical Effectiveness & Research Translation (CONCERT), is the largest of its kind, bringing together electronic medical records from over 100,000 patients with the deadly disease.

COPD is the third leading cause of death in the U.S., affecting over 12 million people and costing an estimated $50 billion in health care expenditures annually.

According to a 2006 study, Americans with COPD receive only 58 percent of appropriate health care services. While there are guidelines for effective care, differences remain among providers as to what tests and procedures are deemed necessary and considered most cost-effective. What’s needed is more comparative effectiveness research to find answers to these questions and to improve care of COPD patients overall.

Shannon Carson, M.D., newly named chief of the Division of Pulmonary and Critical Care Medicine, UNC School of Medicine, has been working on the CONCERT project with others to facilitate such research. Development of CONCERT has been funded by a $3.9 million, two-year NIH Grand Opportunities (GO) grant from the American Recovery and Reinvestment Act of 2009.

UNC’s partners include academic and community sites, a large health maintenance organization and a Veteran’s Administration site. The purpose is to enable large, generalizeable studies. In addition, they have created a registry of detailed clinical information about 1,200 patients from the six centers. Ashley Henderson, M.D., assistant professor of medicine in pulmonary diseases and critical care medicine, is Carson’s co-investigator for this portion of the project at UNC.

The researchers have worked closely with more than 30 stakeholder organizations, such as hospital associations, patient advocacy groups and major health insurers, for development of the data hub and are now inviting their input about what research questions to address in future studies. The data hub physically resides with Kaiser Northwest at the Center for Health Research in Portland, OR.

The process of aligning data from electronic medical records from many disparate systems has been a huge task, said Carson. As principal investigator for the UNC site, he turned to the Carolina Data Warehouse for Health. The CDW-H is a joint service of the North Carolina Translational and Clinical Sciences (NC TraCS) Institute and UNC Health Care. NC TraCS is home of UNC’s Clinical and Translational Science Awards (CTSA) from the National Institutes of Health. The CDW-H houses data collected from patient encounters with UNC Hospitals and through its billing system for use by researchers at UNC and provides technical support for studies involving the data.

“The CDW-H is the perfect type of infrastructure to make this possible,” explained Carson. He added, however, that the data “was not just sitting there on a shelf.”

“A lot of the variables we were interested in are very specific to patients with COPD,” said Carson. “Importantly, the algorithms to identify patients with COPD were unique. The CDW-H personnel had to do a fair bit of programming to identify patients and help us search for sources for these variables.” These adjustments made the UNC data compatible with the formats for how electronic medical record patient data is collected at the other sites.

“We have met two of three major milestones for the project,” said Brent Lamm, director of information technology at NC TraCS. He added, “Loretta Fearrington, research analyst at NC TraCS, led the data analytics work and has done a fantastic job of addressing institution-specific complexities to integrate our data with partner sites.”

Carson believes the timing was perfect for both the CONCERT study and evolution of the CDW-H. He came to the CDW-H for help in the early stages of development of the information technology service.

“Actually this was a very good project for the CDW in that it pushed them to expand their capabilities and their knowledge of our own data systems. They were there when I needed them and this was a major project to help them expand,” said Carson.

CONCERT also introduced new challenges in data management for the CDW-H, said Carson. These included the feasibility of transferring data to another site and all of the associated issues of compatibility and protection that don’t exist when data is kept within the UNC system and used only by UNC researchers.

In the future, the CONCERT investigators hope to team with other CTSAs and community-based participatory networks to advance research and disseminate best practices for patients with COPD.