Heart group seeks data reporting for cardiovascular disease

The American Heart Assn. wants far more detailed data to be gathered on cardiovascular disease, including making many conditions that fall under this umbrella reportable from jurisdictions across the country to public health authorities, according to a scientific statement published in the Jan. 2/9 issue of Circulation.

"We believe that we know so much about how to prevent heart disease that, when it occurs, it represents a failure of the public health and medical systems that should be reported to the appropriate agency," said David C. Goff Jr., MD, PhD, lead author and a professor at the Wake Forest University School of Medicine in Winston-Salem, N.C.

The AHA statement, which was created with input from the Centers for Disease Control and Prevention and National Heart, Lung and Blood Institute officials, recommends creating a national public health unit dedicated to monitoring heart disease and stroke and producing regular reports on the subject. It also calls for making cardiac arrests, acute coronary syndromes, strokes, cases of chronic heart failure and associated interventions reportable. Data would be collected populationwide on cardiovascular risk factors such as cholesterol, blood sugar and glycohemoglobin.

Traditionally, reportable diseases have been infectious in nature to aid public health officials in preventing their spread. In recent decades, cancers have been added to this list. Now, because chronic conditions are eclipsing infectious ones in terms of morbidity and mortality and because of technological advances, the statement's proponents say collecting data on cardiovascular disease is timely.

"As we move into the electronic health record world, it's doable," said Janet B. Croft, PhD, one of the authors and chief of epidemiology in the CDC's division for heart disease and stroke prevention.

Some experts say tracking cardiovascular disease would allow physicians and public health officials to have a better handle on the true extent of these conditions. It also could suggest novel interventions to reduce them, quantify whether such interventions are working and identify pockets of people that may need more attention. The most widely quoted CVD statistics now come from the AHA's annual "Heart Disease and Stroke Statistics Update," compiled from government data sources such as the Behavioral Risk Factor Surveillance System Survey and the National Ambulatory Medical Care Survey. Advocates of this change want to cut the redundancy in the various surveys to gain a more accurate picture.

"We don't know how many new heart attacks and strokes there are because stroke and heart attacks are not reportable," Dr. Croft said. "No one collects those data. We know the number of deaths and number of hospitalizations that occur, but that doesn't accurately represent the number of new cases. Health departments cannot target particular areas that need greater efforts. We cannot evaluate whether we have made improvements."

Making this proposal a reality is considered quite a ways off, because extensive data systems would have to be created and legislation enacted by as many states as possible, but response from physicians who actually would report the data varied widely.

On one hand, there was a great deal of support for the concept because cardiovascular disease is so common.

"It's a good idea. Heart disease and stroke are the No. 1 killers and causes of disability. Having a good handle on the actual incidence is important," said James T. Dove, MD, president-elect of the American College of Cardiology. The ACC has not taken a position on this possibility, and Dr. Dove was speaking personally.

Concerns about implementation

But while this concept has a lot of support, concerns exist about how it actually would work. For instance, those most in favor say greater use of electronic medical records is key to implementing such reporting. Still, skepticism abounds whether available systems would be able to handle such extensive surveillance. Many complained that current ones don't communicate with others and that needed data are not always easy to find.

"Our system barely talks to other hospitals in our network, much less the hospital down the block," said Kenneth Mukamal, MD, MPH, an internist and associate professor of medicine at Harvard University. "This is a great idea that needs more work."

Skepticism also surrounds the amount of work required to collect such huge amounts of data and the expenses that would result from making these common conditions reportable.

"There would be some advantage to being able to track heart disease and stroke and being able to better target certain groups," said Peter P. Toth, MD, PhD, a family physician and director of preventive cardiology at the Sterling Rock Falls Clinic Ltd., in Sterling, Ill. "But this would require an enormous time commitment. This is going to be a lot of data. Who's going to pay for this? Who is going to manage the database?"

Even greater hesitation about this proposal was expressed by state epidemiologists, who would most likely be charged with collecting and processing the information. Many questioned whether these data would be worth the money and staff time.

"We always want more and better data," said Allen S. Craig, MD, chair of the surveillance policy panel for the Council of State and Territorial Epidemiologists. "But who will collect, clean up and analyze it? What would it cost and what would the impact be? How will we use the data? We don't like to collect data unless we're going to use it, and I'm not confident it's worth the investment ... with limited resources available to us."