U.S. Needs National Disease Surveillance System

The Institute of Medicine urges HHS to create system that taps into electronic health records and patient-compiled data to help prevent and treat chronic heart and lung conditions.
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The United States needs a national system of public-health surveillance to improve prevention and treatment of widespread chronic diseases, according to the Institute of Medicine. And that system should take advantage of all the information available in electronic medical records, insurance claims, patient-compiled data, and even death records.

"Expanding the use of EHRs in surveillance will have challenges, including the relatively low numbers of hospitals and practices now using the technology," the IOM said in a recently issued report. "Increasingly, this information is being comingled with other health data within large electronic data stores and used for population surveillance, performance assessment, predictive modeling, and care management. Although these sources have yet to be fully assessed, the potential is great that some, if not all, of them may complement and extend chronic disease surveillance eorts, although privacy issues must be addressed."

Emphasizing the value of a national system, the IOM report goes on to state: "Without a national surveillance system, the gaps in current monitoring approaches will continue to exist, making it more difficult to track the nation's health status despite advances in technology and data collection. A robust surveillance system … will help in monitoring, evaluating, and improving policies, programs, and services and in directing the placement of resources, and it will provide a stronger basis for advocacy and education."

The report is the product of a request by the National Heart, Lung, and Blood Institute of the National Institutes of Health (NIH) and the Division for Heart Disease and Stroke Prevention of the Centers for Disease Control and Prevention (CDC) for the IOM to develop a framework for a national disease surveillance system that emphasizes cardiovascular and chronic lung disease.

The IOM, part of the National Academy of Sciences, recommended that the U.S. Department of Health and Human Services (HHS) take the lead in developing a surveillance system, since the department already funds disease surveillance through the CDC and other agencies and is able to convene many stakeholders. The report also suggested that HHS coordinate with other government agencies, including the Department of Veterans Affairs and the Department of Defense, as well as state and local public-health departments and with nongovernmental organizations.

"The framework organizes data from traditional, evolving, and novel surveillance sources to reect the development and progression of chronic conditions over the life course, and also captures the importance of disease prevention. Information collected throughout this framework can be assembled into both specic and general metrics to inform practices at all levels of the healthcare system as well as the deliberations of policy makers in multiple roles," the report said.

According to the IOM, the HHS-led system should incorporate data on:

-- The incidence and prevalence of cardiovascular and chronic lung disease over time.

-- Primary, secondary, and tertiary prevention efforts.

-- Health outcomes as a result of increased disease surveillance.

-- Racial, ethnic, socioeconomic, and geographic disparities in heart and lung disease.

-- Disease risk factors.

-- Care delivery.

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