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Researchers

Academic Medical Centers - Dr. Veronique Roger

Rochester Epidemiology Project (REP)

  • The REP is not a database, it is a records linkage system
  • REP studies are labor intensive
  • Information in multiple sources, paper, and electronic format. Formats vary across sources and over time. Increasing need for IT…
  • Access to over half a century of ~ complete IN and OUT patient data on a geographically-defined population

Olmsted County, MN, Laboratory for Epidemiological Studies

  • Geographically isolated, home of Mayo Clinic. Almost all care delivered by a few providers.
  • Since 1907, Mayo patients assigned a unique identifier, information in a unit medical record (hospitals, offices, ED)
  • Since 1945, diagnoses and surgical procedures indexed
  • REP expanded indexing and medical records linkage to non-Mayo care providers.
  • Lengthy follow-up for fatal/nonfatal outcomes. Follow-up for vital status ~ complete
  • Population-based denominators from decennial

Electronic Medical Record (EMR) and Research

  • For clinical / QA,QC / financial needs
  • Research second step
  • Mayo/IBM Life Sciences system (live July 2005) umbrella for:
    • Clinical notes (dictated)
    • Lab/imaging tests
    • Resources utilization/Billing data

Use of the EMR for surveillance

  • Examples
    • Active recruitment of Acute Coronary Syndrome (ACS) using lab data
    • Active recruitment of Heart Failure (HF) Using Natural Language Processing from clinical notes
  • Need to:
    • Identify population
    • Validate cases using definitions, manually
    • Conduct research-driven measurements
  • Future directions
    • Tracking of non-fatal outcomes
    • Tracking of heath care delivery patterns

Strengths and limitations

  • Strengths
    • Opportunity for efficiencies, timeliness
    • High quality detailed clinical documentation
    • Access to outpatient data
    • Active surveillance capabilities
    • The population
  • Limitations
    • Systems designed for clinical purposes
    • Research applications considered at best as an after thought, often not at all
    • Human interface still needed
    • Still labor intensive
    • The population

Lessons learned

  • EMR systems in academic medical centers differ from one another, are fragmented and at various stages of maturation
  • Sizable challenges for collaborative work
  • As study needs/designs differ, customization likely unavoidable

Opportunity to partner to address CV data needs

  • Clinical and research interfaces between: a) Clinical research - Drug/device trials and b) Epi/HSR research, pharmaco-epi, QA...
    • a) Clinical research - Drug/device trials
      • Study operations
      • Study data
      • Document management
    • b) Epi/HSR research, pharmaco-epi, QA...
      • Patient information environment
  • For surveillance, need denominators/defined populations

Value of the model for new studies to address CV data needs

  • Linkage system
  • Population denominators
  • Replication conceptually easier in electronic world
  • IT intensive

References

  • Bristol N, Lancet, 2005; 365: 1610-1611
  • Pakhomov SV, Journal of Biomedical Informatics; 2005 38:145-153
  • Academic Health Centers' Clinical Research Forum (http://ahcforum.org)
  • Association of American Medical Colleges (Recommendations from conference in IT enabling clinical research, 2002)

Back to Workshop Agenda

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