NHLBI Workshop

Data Needs for Cardiovascular Events, Management, and Outcomes

Small Working Group: Out-of-Hospital Surveillance - Dr. Joseph Ornato, Group Leader


What we need to track

  • Sudden cardiac death
  • Stroke
  • Acute & chronic coronary syndromes
    • Myocardial infarction
    • Unstable angina
    • Stable angina
  • Heart failure

Where we need to track CVD data

  • Emergency medical services (EMS)
  • Office/clinic setting
  • Emergency department
  • Observation visits
  • Deaths before entry into healthcare system

Where we want to be in 10 years

  • Coordinated, cost-effective system of CVD surveillance that has core data (i.e., counts) on national level, more detail at state & local levels
  • Provides a return on investment
  • Uniform data definitions & data transfer standards
  • Required, automatic population of data from electronic medical record (EMR) systems

Major Gaps

  • No one entity owns the problem
  • Paucity of electronic data & linkages
    • Out of hospital vs. in-hospital
    • Agency to agency, entity to entity
  • Paucity of CVD incidence & outcome rates
  • No uniform healthcare identifier
  • No public mandate to share the data

Optimizing Existing Data Systems

  • Look at other models as examples
  • Inventory & map existing data systems
  • Require compliance with data standards (e.g., HL7, PHIN) for federal funding
  • Need national coordinating entity
  • Need to test & validate existing data

Need new data strategies or optimize existing?

  • Combination of both
  • Need to accelerate EMR infrastructure
  • Need uniform healthcare identifier
  • Could benefit from new technologies such as health information data cards
  • Make CVD a reportable disease as records become electronic

Immediate Steps

  • Inventory & map existing data systems
  • Stakeholder meeting to develop a vision document
    • Similar to EMS Agenda of the Future
    • Establish who should lead the effort
    • Establish a strategy for achieving the vision
  • Continue to standardize disease and outcome definitions, incorporating standard vocabulary amenable to electronic capture
  • Link current databases from federal, state, local, and private institutions
  • Could require institutional compliance with electronic data standards before providing federal funding to grantees/contractors

Long Term Steps

  • National uniform healthcare identifier
  • National uniform definitions for reporting clinical data on CVD
  • Make CVD encounters reportable as electronic medical record systems become operational

Where we want to be in 10 years

  • Coordinated, cost-effective system of CVD surveillance that has core data (i.e., counts) on national level, more detail at state & local levels
    • Provides a return on investment
  • Uniform data definitions & data transfer standards
  • Required, automatic population of data from electronic medical record systems

Back to Workshop Agenda

Skip footer links and go to content
Twitter iconTwitterExternal link Disclaimer         Facebook iconFacebookimage of external link icon         YouTube iconYouTubeimage of external link icon         Google+ iconGoogle+image of external link icon