1. H1N1 Disease Surveillance Team Project Week 5 Presentation Melody Dungee Beena Joy David Medina Calvin Palmer

2. Project Overview H1N1 Disease Surveillance Design an information architecture to enable integration for H1N1 disease surveillance in a local community Surveillance – “Information for Action” “…ongoing systemic collection, collation, analysis and interpretation of data and the dissemination of information to those who need to know in order that action may be taken.” 1 Why is H1N1 surveillance important? 2009 H1N1 may infect ½ the U.S. population Require 1.8M hospitalizations Result in 30 – 90K deaths 2 1 http://www.who.int/countries/eth/areas/surveillance/en/index.html 2 President’s Council of Advisors on Science and Technology. U.S. Preparations for 2009-H1N1 Influenza. August 7, 2009. Available at: http://www.whitehouse.gov/assets/documents/PCAST_H1N1_Report.pdf

3. Stakeholders State and Local Public Health Departments Community Members Business, charities (homeless shelters, etc.), faith-based organizations, educational institutions, day care, hospitality Local Hospitals/Clinics and physicians Local healthcare provider organizations Labs, long-term care, ancillary care, pharmacies Local Government Organizations Fire fighters, police, Red Cross, local agencies

4. Business Case Business issues: What problems is the project addressing? Monitor and reduce the spread of H1N1 disease Determine the required data/information sources and integration issues Enable analysis of H1N1 surveillance data Determine risk factors (ID high risk groups) for prediction and control Enable development of prevention strategies Other? Justification: Why should the project be implemented? Financial perspective Reduce cost of medical care (i.e., estimated 1.8M hospital admissions, etc.) Effect on U.S. business Absenteeism - 84% of business concerned H1N1 outbreak will adversely affect their business 67% would note operational problems if 50% of workforce off for more than 2 weeks 3 Regulatory concerns Guide the development of decisions regarding public health response Guide the formulation of public health policies Evaluate effectiveness of public health programs for H1N1 HIPAA 3 http://www.hsph.harvard.edu/news/press-releases/2009-releases/businesses-problems-maintianing-operations-significant-h1n1-flu-outbreak.html

5. Business Case Goals and objectives Identification and integration of all data sources needed for effective H1N1 surveillance Be able to identify potential H1N1 cases in near real-time Improve timeliness and accuracy of communications regarding H1N1 virus in the local community Communicate potential H1N1 cases to community epidemiologists within 24 hours of confirmed H1N1 cases Provide sufficient information for local authorities to develop local mitigation strategies Avoidance of projected H1N1 infection rates Based on President’s Council of Advisors on Science and Technology Report

6. Work Flow H1N1 surveillance activities: Cases may be reported from a variety of sources from within the health care setting, such as clinical laboratories and private physicians. This data is then collected, managed, transmitted, analyzed, accessed and disseminated..

7. Current State of Data Collection Once identified, typically reported to a local health department, often using paper-based data collection forms At the local health department: Forms may be entered into a computerized electronic data management system and transmitted to the State, or they may be copied, filed at the local level and then sent directly to the State where they are manually entered into the State health department’s electronic system.

8. Data Workflow Current paper-based data collection system

9. Problems with Current State Data Collection: Places a large burden on medical care staff who have responsibility for disease reporting. Often left up to health care providers to determine if a case meets public health surveillance case definitions and to figure out how to fill out the wide variety of forms produced by CDC and health departments. Significant time tracking down patient records in response to requests for more information from the health department. Data management issues: multiple case reports : Given the number of potential sources of information regarding a single patient, the possibility exists that persons may be entered into the system more than once or may have discrepant data reported about them on the multiple reports.

10. Problems with Current State Data Management Issues: Data Entry at the Health Departments Because that CDC has created multiple data entry systems for local and State health department data for an individual person must be entered into multiple, disparate systems. Each of the CDC provided systems works differently, so that using more than one of them is onerous and time consuming. Data Transmission from Local to State Health Department and to CDC: there are many different methods for reporting data. Diskettes may be mailed, dial-up modems may be used to connect over public telephone lines, leased telephone lines may provide wide area network used for reporting, or the public Internet may be used. Currently, just for reporting to CDC, all of these methods are in place. Different levels of security in terms of electronic encryption methods that are applied. For example, in a recent inventory, over 73 different surveillance systems developed at CDC sent or received surveillance data electronically. Only 19, however, reported encrypting the data for transmission.

11. Future State - NEDSS The National Electronic Disease Surveillance System (NEDSS) will facilitate the handling of data

12. Future State - NEDSS Data Collection: Have standards in place - uniform data collection practices across the local county area / state A minimum set of demographic data that should be collected as part of the routine surveillance. Standardizing data collection forms and provide consistent method of coding data on the form Standard data architecture and electronic data interchange format to allow computer systems to generate automatically electronic case reports that can be sent to local or State health departments. Data Management - Duplication issue : Data Registry Matching – reliable record matching software components/tools used at the local and State health department levels to detect duplicate reports based on a person’s demographic data (e.g., name, address, date of birth, sex) and discrepant data

13. Future State - NEDSS Data Management – Data entry at the health department issue : Information is entered and stored in a consistent and uniform way. Having data stored in a uniform way means that it can be more easily be transferred from one system to another so that duplicate data entry is reduced. User interface of CDC-developed surveillance systems - A person trained on any one system, for example, should be able to move to another without changing the way they interact with the software. Data Transmission - from Local to State Health Department and to CDC: Health Alert Network (HAN) use the Internet as a backbone for communicating surveillance data, surveillance reports, training materials, policy documents, etc. between health departments and CDC. Connect local health departments to one another and to other organizations critical for preparedness and response. community first-responders, hospital and private laboratories, state health departments, CDC, and other federal agencies

14. Future State - NEDSS Secure Data Network Allows CDC a secure method for encrypting and transferring files from a health department to a CDC program application across the Internet. (As an Internet- based system, the SDN may be considered to be part of HAN, not independent of it.) Eliminate the multiple methods of receiving data. Provide a consistent, transparent method for authenticating the source and ensuring the integrity of those data Data Analysis: Link data collected in different surveillance and information systems such as laboratory based system or an immunization registry Having standardized definitions for data elements will help ensure the correct interpretation of data elements. Data Access and Dissemination: software application that will provide data access to analyze and disseminate data and information in timely manner, primarily using data warehouses

15. Public Health Surveillance through NEDSS Responds to requests for information by State health departments, other Federal and State agencies, non-profit organizations, the news media in a timely fashion Strengthens local health departments and their links to critical community health organizations to form a coordinated public health response to H1N1 Laboratories EMS Hospitals Other Health Agencies CDC & Other Federal Agencies News Media

16. Benefits The use of standards will assure that surveillance data is easily shared, that users familiar with one system can easily use another, and that software can be easily shared across programs. Standards will serve as the framework that will provide integration for the collection, management, transmission, analysis, and dissemination of data Ensure that all cases that are in the provider’s data systems are being reported correctly to local, state and federal agencies in a secure manner http://www.bt.cdc.gov/DocumentsApp/HAN/han.asp http://www.cdc.gov/nedss/Archive/Supporing_Public_Health_Surv.pdf