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:
- What should we aim for in using the existing health data collection systems for surveillance of incidence and prevalence of CHD, heart failure, and stroke?
- How do we develop the e-surveillance systems?
- What are the challenges in data collection and sharing?
- Are any feasibility studies needed? And if so, how should they be designed?
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:
- Conduct pilot studies to evaluate the feasibility and cost of establishing national electronic surveillance systems for cardiovascular disease and stroke
Construct needed core data elements into EHR systems to capture data routinely and systematically for CVD surveillance
- Establish a set of standardized core data elements for CVD surveillance
- Assess completeness, reliability, and validity of data in EHR systems
- Define populations, identify data entities, and develop data linkage platforms
- Conduct calibration studies (e.g., for diagnoses) using gold standards such as established epidemiologic studies
Promote standardized data collection
- Identify strategies to incentivize health care providers and health insurance plans to report needed core data elements for surveillance
- Incorporate core data elements into quality of care measures for performance evaluation
- Work with the Office of the National Coordinator (ONC) for Health Information Technology to include the core data elements in the Meaningful Use regulations
- Make MI, stroke, and heart failure reportable diseases and conditions for public health surveillance
Promote and evaluate technologies to directly capture and store structured EHR data for clinical and public health research
- Require NIH-funded studies to collect data using the standards defined by the MU regulations
- Support studies to develop and justify standards for measures needed for CVD surveillance but that have not been defined by the MU (e.g., EKG, radiology reports, echocardiogram findings)
- Enhance and evaluate technologies and software that can be used to capture narrative information in EHR systems for CVD surveillance
- Evaluate predictive values of structured clinical data required by the MU2 for CVD surveillance
- Participate actively in EHR health information standards and policy development
Collaborate with the CDC, Centers for Medicare & Medicaid Services (CMS), and other institutes at NIH to identify common data elements for disease surveillance including definitions of outcomes, diagnostic evaluations, and key co-morbid conditions
- Enhance open-source tools that capture data from EHR and other data systems for the surveillance
- Support studies on novel methods to capture real time data and data collection, and improve interoperability
The workshop participants plan to prepare a short manuscript for publication in a peer-reviewed journal.
- Stephen Sidney, M.D., Kaiser Permanente Northern California
- Clarice Brown, M.S., National Center for Health Statistics, CDC
- Lesley Curtis, Ph.D., Duke University School of Medicine
- Doug Fridsma, M.D., Ph.D., Office of the National Coordinator for HIT
- Alan S. Go, M.D., Kaiser Permanente Northern California
- Anil K Jain, M.D., Cleveland Clinic
- Moira Kapral, M.D., Toronto General Hospital
- Walter Koroshetz, M.D., National Institute of Neurological Disorders and Stroke, NIH
- Clement McDonald, M.D., National Library of Medicine, NIH
- Robert Merritt, M.S.P.H., Centers for Disease Control and Prevention
- Richard Platt, M.D., Harvard Medical School and Harvard Pilgrim Health Care Institute
- Veronique Roger, M.D., M.P.H., Mayo Clinic
- Wayne Rosamond, Ph.D., M.S., University of North Carolina Department of Epidemiology
- John Rumsfeld, M.D., Ph.D., University of Colorado
- Ralph Sacco, M.D., University of Miami
NHLBI Planning Group
- Hanyu Ni, Ph.D., M.P.H.
- Paul Sorlie, Ph.D.
- Jean Olson, M.D., M.P.H.
- Jacqueline Wright, Dr.P.H.
- Michael Mussolino, Ph.D.
- Diane Bild, M.D.
- Barbara Wells, Ph.D.
Hanyu Ni, Ph.D., M.P.H.
Division of Cardiovascular Sciences
Last Updated July 2013