1. Public Health Data Standards Consortium http://www.phdsc.org http://www.phdsc.org

2. Integrating Public Health Biosurveillance Systems into Health Information Exchanges Anna Orlova, PhD Public Health Data Standards Consortium aorlova@jhsph.edu aorlova@jhsph.edu Public Health Information Network (PHIN) – 2008 Atlanta GA, August 28, 2008

3. US Health Information Network - 2014 Source: Dr. Peter Elkin, Mayo Clinic, MN

4. HIEs as NHIN Components Source: Dr. Peter Elkin, Mayo Clinic, MN, 2006

5. Health Information Technology Standards Categories 1. Data Standards, e.g., vocabularies and terminologies 2. Information Content Standards, e.g., Reference Information Models (RIMs) 3. Information Exchange Standards, e.g., messaging standards 4. Identifiers Standards, e.g. National Provider Identifier (NPI) 5. Privacy and Security Standards 6. Functional Standards, e.g. processes/workflow 7. Other, e.g. IT standards This classification of health IT standards types has been developed by the Health Information Technology Standards Panel (HITSP) in 2006

6. Health Information Technology Standards Categories 1. Data Standards, e.g., vocabularies and terminologies 2. Information Content Standards, e.g., Reference Information Models (RIMs) 3. Information Exchange Standards, e.g., messaging standards 4. Identifiers Standards, e.g. National Provider Identifier (NPI) 5. Privacy and Security Standards 6. Functional Standards, e.g. processes/workflow 7. Other, e.g. IT standards This classification of health IT standards types has been developed by the Health Information Technology Standards Panel (HITSP) in 2006

7. Health Information Technology Standards Categories – Functional Standard To date, the main focus of the standard development activities has been on data standards (vocabularies and terminologies), information content standards (data representation, RIMs), messaging and infrastructure standards.

8. Number of standards used by category: (1) Terminology 28 (2) Context Information Model 17 (3) Information Exchange 46 (4) Identifier (Individual and organization) 5 (5) Security and Privacy 11 (6) Functionality and Process (workflow) 0 (7) Other 0 National Biosurveillance Use Case: HITSP Interoperability Specification

9. Health Information Technology Standards Categories – Functional Standard Functional Standard describes work processes that support data exchange between users (e.g., clinicians and public health practitioners) in a format of functional requirements specification for electronic communication between settings (e.g., clinical and public health settings).

10. Health Information Technology Standards Categories – Functional Standard Functional standard is a vehicle to assure that the work processes of stakeholders (e.g., clinicians and public health practitioners) related to the electronic data exchange are well understood and agreed upon by stakeholders themselves and then communicated clearly to the developers as functional requirements for the information system.

11. Health Information Technology Standards Categories – Functional Standards The Functional Standard serves as a foundation for the implementation of all other standards. To date in the US, there is no consensus on the format, content, and approach for how to specify the functional standard.

12. Learning from Information Systems Developers: Requirement Elicitation Integrating Public Health Biosurveillance Systems into Health Information Exchanges: Building Functional Standards

13. Learning from Information Systems Developers: Requirements Elicitation The purpose of the requirements elicitation is to specify the information system features from user’s perspectives in a structured Functional Requirements Analysis Document (Functional Standard). FRAD Features: Information System Goals (Tasks) Actors Functions Data Sources Workflow and Dataflow High Level Architecture

14. Learning from Environmental Public Health Tracking Integrating Public Health Biosurveillance Systems into Health Information Exchanges: Building Functional Standards

15.  Are environmental exposures related to clusters of childhood cancer and autism? Are environmental exposures related to clusters of childhood cancer and autism?  What are the impacts of pesticide exposure on children’s health?  Are changes in the environment related to dramatic increase in asthma?  Are adult-onset diseases like Parkinson’s and Alzheimer’s related to cumulative environmental exposure?  Are there increases in Systemic Lupus Erythmetosis (SLE) and multiple sclerosis (MS) in communities with hazardous waste sites?  Are learning disabilities related to environmental factors?  Track health, disease, and risks to target interventions to those populations most affected by environmental hazards and exposures.  Detect new adverse health events associated with environmental exposures.  Detect unusual occurrences, trends, or clusters of specific health events associated with environmental exposures.  Monitor and assess the effects of policies and the efficacy of interventions and established prevention strategies.  Raise awareness about environmental health issues among consumers, policy makers, health practitioners, industry, the public, and the media.  Guide investigations and research initiatives for understanding potential links between the environment and health. Examples of Tasks to be Addressed by the Environmental Health Tracking Network Source: Dr. Nabil Issa, CDC/NCEH

16. Environmental Public Health Tracking Network Population Census Environmental Exposure Tracking Environmental Hazards Tracking Health Outcomes Tracking State and National Data Collection Systems Integrated Environmental Health Tracking, Analysis, Evaluation And Dissemination Exposure Hazards  Track health, disease, and risk trends Establish program priorities Develop, implement, and evaluate public health policies and program strategies Develop rapid-response mechanisms to investigate outbreaks and clusters Develop guidelines/standards Generate hypotheses and initiate applied research Public Health Actions Source: Dr. Nabil Issa, CDC/NCEH

17. System Architecture for Environmental Health Risk Detection, Assessment & Management System Architecture for Environmental Health Risk Detection, Assessment & Management GIS/Spatial EpidemiologyRisk AnalysisData Mining & Knowledge DiscoveryStatistical Models Exposure Detection & Risk Analysis Track health, disease, and exposure risk/trends Detect & evaluate risk of exposure to env. hazards Develop & evaluate public health & environmental stewardship policies & programs Develop rapid-response mechanisms to investigate outbreaks and clusters Develop prevention guidelines/standards Generate hypotheses and initiate applied research Environmental Stewardship & Public Health Actions Source: Dr. Nabil Issa, CDC/NCEH (*) Based on risk assessment and national priorities Environmental Hazards, Ecology and Disease Data Collection Systems Disease Tracking * Hospital Discharge Birth Defects BRFSS Cancer Registries Health Surveys Vital Statistics Population Demographi cs * Census Data Exposure Tracking * Human Exposure to Environmental Chemicals Toxic Exposure Surveillance Hazards Tracking * Hazardous Substances- Emergency Event Surveillance Toxic Release Inventory Ecological Tracking * Marine Life Animals Plants Population Disease Indicators Population Demography Health Outcomes Exposure Profile Environmental Hazard Hazardous Material Profile Exposure Integrated Environmental Health Indicators Data Warehouse Biomonitoring Natural Accidental Intentional Ecological Indicators Data Linking/IntegrationMetadataData StandardizationData Quality Assurance Data Integration, Transformation & Geocoding Geocoding

18. Towards a Functional Standard for an Integrated Biosurveillance Information System Approach Develop a structured questionnaire to document user requirements for public health information systems involved in biosurveillance Use the questionnaire in the biosurveillance systems survey in selected jurisdictions Analyze the usability of the questionnaire in specifying user requirements for biosurveillance system Survey of 17 public health information systems associated with biosurveillance in 3 states

19. Biosurveillance System Goals/Tasks General Track population health, disease and exposure risk trends (53%) Detect public health threat cases /outbreaks (59%) Monitor cases /outbreak (situational awareness) (59%) Manage case/outbreak response (47%) Evaluate case management/ outbreak response activities (47%) Policy & Assurance Develop and evaluate public health policies and programs (47%) Develop prevention guidelines and interventions (53%) Research Generate hypotheses and initiate applied research (47%) Education and Outreach Create and manage education and outreach programs on the conditions being tracked (47%)

20. Biosurveillance System Actors & Data Sources SENDERS Healthcare providers (57%) Laboratories (47%) Local health departments (47%) Federal systems (18%) Other (59%) RECEIVERS Data Entry Unit(32%) Data Manager (12%) Program Staff (59%) Other (41%) USERS Program Staff, (e.g., epidemiologist, nurse, planner/program coordinator) (65%) Program Director (47%) Department Director (35%) Health care providers (53%) Health plans (12%) Policymakers (24%) Researchers (29%), Other (47%)

21. Biosurveillance System Data How is data received? Phone (47%) Paper-forms mailed (53%) Paper-forms faxed (47%) Web-based data entry interface (29%) Pulling data from the clinical electronic health records (EHR) system (12%) Retrospective bulk electronic file submission (12%) Interactive health information exchange (12%) Other (59%)

22. Biosurveillance System Data Use Conduct case investigation (59%) Conduct case management (47%) Conduct outbreak investigation/management (65%) Generate notifications/alerts (59%) Develop Agency’s reports (71%) Other (24%)

23. Biosurveillance System Data Analysis Type of Analysis Performed Trends (by diagnosis, symptoms, location, provider practice, etc.) (53%) Rates (by demographics, location, longitudinal) (41%) Clusters (53%) Regression analysis (24%) Syndromic assessments (spatial, CUSUM, SMARTSCORE) (24%) Other (12%) Analysis Tools SAS (53%) EpiInfo (29%) Other (59%)

24. Biosurveillance System: Information Sent Back to Senders Information Types Nothing (6%) Case investigation reports (18%) Instructions to activate specific procedures (29%) Notification/alerts about detected events (41%) Other (41%) Sent As Part of case investigation (18%) Part of response activities (24%) Required by law (6%), Other (18%) If Not Sent, Why Do not have resources (6%) They will not know what to do with the information (6%) They are not interested (6%), Is not required (12%), Other (12%)

25. Towards a Functional Standard for an Integrated Biosurveillance Information System NEXT STEPS: 1. Educate Public health community about health information technology standards via PHDSC- NACCHO-ASTHO Continuing Education in Public Health Informatics Training 2. Involve public health community in the development of the functional standards for individual programs 3. Work with vendors to inform the development of interoperability standards using public health functional standards