Ross Lazarus MB,BS MPH

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Innovations in Public Health Surveillance: The National Bioterrorism Syndromic Surveillance Demonstration Project Ross Lazarus MB,BS MPH Director of Bioinformatics, Channing Laboratory Brigham and Women s Hospital and Harvard Medical School June 10, 2003

Report Documentation Page Form Approved OMB No. 0704-0188 Public reporting burden for the collection of information is estimated to average 1 hour per response, including the time for reviewing instructions, searching existing data sources, gathering and maintaining the data needed, and completing and reviewing the collection of information. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden, to Washington Headquarters Services, Directorate for Information Operations and Reports, 1215 Jefferson Davis Highway, Suite 1204, Arlington VA 22202-4302. Respondents should be aware that notwithstanding any other provision of law, no person shall be subject to a penalty for failing to comply with a collection of information if it does not display a currently valid OMB control number. 1. REPORT DATE 10 JUN 2003 2. REPORT TYPE N/A 3. DATES COVERED - 4. TITLE AND SUBTITLE Innovations in Public Health Surveillance: The National Bioterrorism Syndromic Surveillance Demonstration Project 5a. CONTRACT NUMBER 5b. GRANT NUMBER 5c. PROGRAM ELEMENT NUMBER 6. AUTHOR(S) 5d. PROJECT NUMBER 5e. TASK NUMBER 5f. WORK UNIT NUMBER 7. PERFORMING ORGANIZATION NAME(S) AND ADDRESS(ES) Channing Laboratory; Brigham and Womens Hospital; Harvard Medical School 8. PERFORMING ORGANIZATION REPORT NUMBER 9. SPONSORING/MONITORING AGENCY NAME(S) AND ADDRESS(ES) 10. SPONSOR/MONITOR S ACRONYM(S) 12. DISTRIBUTION/AVAILABILITY STATEMENT Approved for public release, distribution unlimited 13. SUPPLEMENTARY NOTES See also ADM001576., The original document contains color images. 14. ABSTRACT 15. SUBJECT TERMS 11. SPONSOR/MONITOR S REPORT NUMBER(S) 16. SECURITY CLASSIFICATION OF: 17. LIMITATION OF ABSTRACT UU a. REPORT unclassified b. ABSTRACT unclassified c. THIS PAGE unclassified 18. NUMBER OF PAGES 23 19a. NAME OF RESPONSIBLE PERSON Standard Form 298 (Rev. 8-98) Prescribed by ANSI Std Z39-18

Outline Electronic records for surveillance Syndromic surveillance for BT HPHC/MDPH System National Demonstration Project Issues and challenges Lessons

Electronic records for surveillance BT - timeliness is crucial EMR potentially real time with Dx Increasingly available Large group practices, HMOs Low marginal cost Already in a database somewhere Value add - eg BT surveillance

Syndromic Surveillance for BT First signs - non-specific prodrome ICD highly specific/granular Clinician coding styles Systematic coding influences Aggregate ICD into broad syndromes Currently 12 - eg Respiratory Infection HPHC proof of concept

http://btsurveillance btsurveillance.org Public web site with access to publications and information about the project

http://btsurveillance btsurveillance.org Regular daily reports since October 31 2001 (Authorized users only)

http://btsurveillance btsurveillance.org Next day daily results from Generalised Linear Mixed Models - P values for major syndromes (Authorized users only)

http://btsurveillance btsurveillance.org Detailed individual records on line for immediate access Hipaa! (Highly restricted authorized users only)

National Demonstration Project Electronic health records Office visits, nurse telephone triage calls ~20 million people. 50 states. Distributed processing Centralized reporting Syndrome count data only HIPAA deidentified (statistician s cert.)

National BT Demo Program Optum 11/02 1-50 51-250 251+ Others Funded Pending or in discussion

National Demonstration Project design features Scalable, data from many sources. Health plans put data extracts on a PC they control for processing. Analysis and reporting programs provided by data center. Internet-based communication. Encounter-level data stays with health plan or provider until health department requires it. Adaptable to other public health uses.

Surveillance strategy Extract encounters with an ICD9 code of interest. Initially daily. Potentially more frequently Group encounters into syndromes. Identify INITIAL visit for each episode of illness. Map episodes to the patient s home ZIP code initially Geocoding -> census tract when available Transfer summary data to data center Identify statistically extreme regions each period. Notify data provider and public health agency.

Identifiable data is all processed locally using software provided by the Datacenter Identifiable lists of encounters available locally to be passed on in case of an event. XML file, counts by zip by period only to Datacenter Hipaa! Hipaa!

XML - counts to Data Center <Period> <starttimestamp>2003-04-10t01:00:00-05:00</starttimestamp> <endtimestamp>2003-04-11t00:59:59-05:00</endtimestamp> - <geography TYPE="ZIP"> <geovalue>01463</geovalue> - <syndrome TYPE="Respiratory"> - <payer NAME="PR"> <count>1</count> </payer> </syndrome> </geography> - <geography TYPE="ZIP"> <geovalue>01527</geovalue> - <syndrome TYPE="Hemorrhagic"> - <payer NAME="PR"> <count>1</count> </payer> </syndrome> </geography> - <geography TYPE="ZIP"> <geovalue>01581</geovalue> - <syndrome TYPE="Fever"> - <payer NAME="PR"> <count>1</count> </payer> </syndrome>

Data viewable as time series within minutes of arrival at datacenter GLMM being run as historical data becomes available.

Outline Electronic records for surveillance Syndromic surveillance for BT HPHC/MDPH System National Demonstration Project Issues and challenges Conclusions

Issues: non-technical Surveillance data model Traditionally centralized identifiable Alternative - only counts centralized HIPAA Privacy/Security Authentication & administration Data presentation, visualization User interface for ad-hoc queries Notification - who, how, when

Issues: technical Noisy data! Optimal models ICD9 granularity Syndromes Optimal syndromes & ICD9 mapping Standards for data exchange - XML Authentication and access control Security for internet services - SSL

Overcoming challenges Shared definitions - CDC led workgroup Ad hoc queries. CDC PHIN/NEDSS compliance Open source infrastructure Open standards Open source code

Lessons EMR works for timely surveillance Distributed processing model works Design for additional data sources Standardized syndromes Standardized data exchange Strong encryption Best security practices

Collaborators Richard Platt Ken Klienman Inna Dashevsky Katherine Yih Courtney Adams Virginia Rego

Innovations in Public Health Surveillance: The National Bioterrorism Syndromic Surveillance Demonstration Project Ross Lazarus Director of Bioinformatics, Channing Laboratory Brigham and Women s Hospital and Harvard Medical School June 10, 2003

Data flow Provider / health plan: assigns diagnoses during encounter, extracts selected encounters nightly, identifies new episodes, assigns to zip code. More data as needed Linelist Count by zip Instruction to send linelist to health dept. Health department Alert! Cluster type, size, location. Data center: aggregates data from different providers, identifies unusual clusters Website: Public areas Private areas