NHLBI Workshop

Data Needs for Cardiovascular Events, Management, and Outcomes

Public Health Information Network (PHIN) and National Electronic Disease Surveillance System (NEDSS) -
Dr. Claire Broome


What is PHIN (Public Health Information Network)?

  • It is a multi-organizational business and technical architecture (www.cdc.gov/phin).
    • Technical standards
    • Data standards
    • Specifications to do work
  • It is also a process.
    • Commitment to the use of standards
    • Commitment to participating in development and implementation of specifications

Moving from conceptual to real

  • Many state and local health departments will have different stages of electronic systems and IT capacities
  • Each state/jurisdiction will need to develop specific plans
    • Which systems to integrate
    • What funding streams available
  • Central concept of PHIN is implementation of standards based interoperable systems so all
    • Maximize reuse of tools
    • Efficient use of technical expertise
    • Plan for extensibility

PHIN Components

  • Applications
    • National Electronic Disease Surveillance System (NEDSS) – disease surveillance for 140 notifiable diseases, electronic laboratory reporting
    • BioSense – early event detection
    • Laboratory Response Network (LRN) – diagnostic capacity and information delivery

PHIN Tools available from CDC

  • Software for industry standards based bi-directional inter-institutional messaging transport (PHIN MS)
    • ebXML “handshake,” PKI encryption and security
  • Technical assistance & direct assistance available for public health partners (eg security IVV)
  • PHIN Vocabulary Access and Distribution Services, including web accessible Standard Reference Tables
  • Implementation Guides that specify data standards, message format

Surveillance Funding History

  • 50 states, 6 cities funded for NEDSS: 43 started with Assessment & Planning phase in September 2000
  • NEDSS ELC awards FY 2001-2005
  • September 2002, 2003, 2004: Public Health and Social Services Emergency Fund provides >$1 billion for state and local public health preparedness capacity
    • Guidance from CDC and HRSA to use PHIN standards for IT investments
    • Guidance explicitly includes NEDSS as part of surveillance

How does NEDSS support public health surveillance functions?

  • More timely detection via electronic laboratory results reporting from clinical diagnostic laboratory information system
    • For pre-defined results of public health importance, electronic message to health department automatically sent
    • Message includes structured data including test, result, provider ID, patient age, sex
    • Multi-jurisdiction labs, public health labs, some local labs

How does NEDSS support public health surveillance functions?

  • Web data entry: case information available to local & state health departments immediately on entry (no paper, no mail)
  • Support case investigation by state and local health dept
  • Share lab results electronically between state public health lab & state surveillance
  • Send standardized data electronically to CDC
  • Same application for over 140 diseases, replace disease specific “stovepipe” applications
  • Integrate with other PHIN components

NEDSS Base System:

  • NEDSS compatible system for state and local use developed by an experienced web software developer (Computer Sciences Corporation)
  • Also useful as a specific implementation of NEDSS -- e.g. standard messages, database model
  • Version 1.0 includes 93 notifiable diseases, and modules for vaccine preventable diseases, hepatitis, bacterial meningitis and pneumonia
  • Now at Version 1.1.3; includes over 140 notifiable diseases, expanded data entry capacity, reporting capacity, locally defined fields
  • Added additional contractor, SAIC, to accelerate Program Area Module Development

Status of NEDSS surveillance enhancements April 2005

Grantee capacity Impact on disease reports In daily use Develop or deploy Planning
Capacity for web data entry More timely 29* 12 15
Electronic Lab Reporting (excludes lead only) More timely
More cases
28 14 12
*application in use: 1 commercial (3 states); NEDSS Base System (10 states); custom (16)

State NEDSS Surveillance Functions, April 2005

  • Surveillance using web-based data entry - 9
  • Electronic Laboratory Reporting - 8
  • Both - 18

Opportunities to accelerate Cardiovascular Event Surveillance

  • Collaboration on CV surveillance research
    • eg data sources, data entry options, EHR utility
  • Collaboration in accelerating standards based, interoperable electronic health records
    • eg FHA, JCAHO, NCQA, NQF
  • Collaboration on utilization of tools
    • eg CDC MOU with NCI
  • Collaboration on cardiovascular/stroke surveillance systems

What does NEDSS have to do with HIPAA?

  • HIPAA mandates national health care data standards and policies in four areas:
    • Transaction content; unique identifiers for providers, health plans; security; privacy
  • NEDSS architecture standards are HIPAA compliant:
    • supports “dual use” for security, messaging elements
  • Approach to NEDSS data standards is HIPAA compliant:
    • Adopting HIPAA standards where relevant eg electronic laboratory reporting in NEDSS uses HIPAA claims attachment
    • Advocating inclusion of data elements relevant to public health with SDO’s

What does NEDSS have to do with HIPAA Privacy Rule?

  • Privacy Rule allows current practice of sharing data with public health
    • Rule permits health care providers to share individually identifiable information with legally authorized public health entities for public health activities
    • Public health activities include surveillance (NEDSS), investigation, intervention

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