Registry Tools at the Heart of Cardiology Innovation

There were several impressive presentations at the January 2012 eHealth Initiative annual conference, which focused on chronic disease. As one of the speakers noted, when you can have someone like Carolyn Clancy, M.D., director of the Agency for Healthcare Research and Quality, as the introductory speaker framing the day’s discussion, that’s a tough act to follow!
But I came away especially impressed by the presentation of Jack Lewin, M.D., CEO of the American College of Cardiology, who talked about progress made in the use of electronic health records and registries in cardiology.
In his talk on the “e-Day in the Life of a Cardiologist,” Lewin discussed the increasingly central role of ACC’s National Cardiovascular Data Registry (NCDR) as well as some plans for its future.
 “The NCDR is in use in 2,500 hospitals, collecting data and giving people feedback,” Lewin said. Launched in 1997, the NCDR has grown to 17.5 million patient records on the inpatient side and 2.5 million records on the outpatient side. “It is the biggest clinical repository of cardiovascular data in the world,” Lewin said.
Comprised of a suite of six hospital-based registries, “it has become a tremendous repository of information and data to help transform the practice of cardiology,” Lewin said. It is becoming sensitive enough to reach back to the individual procedure, he added. “We give people feedback if last night they didn’t treat someone with a heart attack fast enough.”
The Pinnacle practice-based registry is now in use by about 1,000 of the nation’s 6,000 cardiology practices, he said. (On a side note, he mentioned that there are about 6,000 U.S. cardiology practices, and very few solo practitioners left. When he took the CEO post at ACC in 2006, 70 percent of cardiologists were in private practice and 30 percent were hospital based. Today, he added, 70 percent are hospital-based and 30 percent are in private practice, partly due to the way Medicare reimburses them.)
Pinnacle provides quarterly benchmark reports that measure the quality of care being provided and pinpoint opportunities for improvement. It also provides access to relevant data focusing on coronary artery disease, hypertension, heart failure and atrial fibrillation—the four most common cardiovascular conditions.
A research network has grown up around NCDR that allows organizations to conduct approved research using NCDR data. It allows hospitals and cardiac-care facilities to participate in government and privately funded NCDR research projects.
Finally, Lewin mentioned a relatively new personalized informed consent tool called PRISM (Personalized Risk Information Services Manager) that estimates each patient’s risks and outcomes by assessing 12 factors, including age, existing medical conditions, and prescribed medications, and comparing them with validated risk models from the NCDR. “We can use this data to tell you your personalized risk based on co-morbidities,” Lewin said. It’s also important for doctors and hospitals, he said, because it can help predict whether a complication such as bleeding is likely to occur and take preventive steps to protect against it.
As they grow larger, registries such as the NCDR suite seem to be taking on increasing value both as research tools and as aides to hospitals and individual practices in reporting to regulatory agencies and in getting feedback on quality improvement efforts.