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Using Existing Health Data Collection Systems For Cardiovascular Disease Surveillance
The National Heart, Lung, and Blood Institute (NHLBI) convened a workshop on June 21, 2013 in Bethesda, Maryland, to advise the Institute on research needed to advance the CVD surveillance systems in the United States. The workshop consists of experts in disease surveillance, cardiovascular epidemiology, bioinformatics, and health information technology.
Background and Purpose
Documentation of long term trends in the incidence of coronary heart disease (CHD), stroke, and heart failure have been funded by the NHLBI through community-based studies such as the Atherosclerosis Risk in Communities study (ARIC), Minnesota Heart Survey, Worcester Heart Attack (and Heart Failure) Study, and Rochester Epidemiologic Project. Several years ago, the NHLBI also funded an HMO-based surveillance study using electronic health records (EHR). Both of these approaches (community-based and HMO-based) have limitations of financial costs and geographical or population specificity.
The increased adoption of EHR by U.S. hospitals and physicians (72% in 2012 and expected to be 85% by 2015) has created the potential to revolutionize CVD surveillance by improving its timeliness, affordability, and coverage of the nation. In a recent report called “A National Framework for Surveillance of Cardiovascular and Chronic Lung Diseases,” the Institute of Medicine (IOM) recommended that the Department of Health and Human Services (HHS) take the lead in creating a national system for CVD surveillance by integrating the current and emerging health data collection systems.
The purpose of this workshop was to evaluate the ability and readiness of existing health data collection sources to establish national CVD surveillance systems and to identify the first steps that must be taken to address feasibility and cost before large surveillance systems can be implemented.
The workshop participants reviewed several examples of existing health data collection systems, including the cardiovascular surveillance system in the Cardiovascular Research Network (CVRN), Rochester Epidemiology Project medical records linkage system, Centers for Disease Control and Prevention (CDC) National Health Care Surveys, American College of Cardiology’s National Cardiovascular Data Registries (NCDR), Veterans Affairs (VA) Health Care System, and NIH Distributed Research Network. Usability of EHR for large national CVD surveillance systems was discussed. Participants reviewed the Meaningful Use (MU) regulations for EHR, standards mandated by MU Stages 1-3, accessibility of EHR data in standard form nationwide, and challenges in structured EHR data capture. Efforts that have been made to improve EHR interoperability for clinical and health research were discussed.
The remainder of the meeting focused on discussions on the following four topic areas:
A consensus was reached that the increased use of EHR and availability of large research networks provide a great opportunity to develop national systems for CVD surveillance. Participants agreed that early efforts should focus on leveraging the existing data systems for surveillance of incident CHD, stroke, and heart failure, and later expanding systems for risk factor assessment and outcomes research. The workshop participants provided the following recommendations to advance the field:
The workshop participants plan to prepare a short manuscript for publication in a peer-reviewed journal.
NHLBI Planning Group
Last Updated July 2013