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
  

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