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Overview, Policy, and Systems
Federal Role in Early Detection Preparedness Systems
Claire V. Broome
Corresponding author: Claire V. Broome, CDC, 1600 Clifton Rd., NE, MS D-68, Atlanta, GA 30333. Telephone: 404-6397860; Fax: 404-639-7770; E-mail: email@example.com.
Disclosure of relationship: The contributor of this report has disclosed that she has no financial interest, relationship, affiliation, or other association with any organization that might represent a conflict of interest. In addition, this report does not contain any discussion of unlabeled use of commercial products or products for investigational use.
This report discusses CDC's role in the early detection of threats to public health, including linkage of detection to other preparedness functions, and provides an update on recent progress in improving these capabilities. CDC's role has been fivefold: 1) identifying and adopting information system standards; 2) providing funding; 3) defining critical surveillance functionalities; 4) accelerating Internet-based surveillance systems and electronic reporting of laboratory results; and 5) implementing BioSense, a secure, Internet-accessible, national early detection system that includes syndromic surveillance. Ongoing iterative efforts and consultation are needed to ensure future progress.
The U.S. public health system is responsible for the prompt detection and investigation of, and response to, threats to the population's health, whether caused by a known organism, a previously uncharacterized disease, or a covert or overt terrorist event. Accomplishing these functions requires a coordinated effort of local, state, and federal public health entities, working with multiple partners, including clinical care delivery, public policy, first responders, the public, and law enforcement. Information systems to support these complex activities by partners in multiple organizations and areas must be interoperable, incorporating information system standards to facilitate sustainable, real-time delivery of important data and to make alerts and information available to the public health partners that verify, investigate, and respond to outbreaks.
Preparedness both requires and benefits from the active collaboration of federal, state, and local public health partners. Data for the early detection functions that are part of these interoperable information systems are obtained from multiple sources, including traditional clinical care delivery sites and clinical laboratories as well as less traditional health-monitoring data sources (e.g., nurse call centers, over-the-counter retail sales data, work and school absenteeism data, veterinary health data, and information from environmental sensing devices). This report discusses CDC's role in early detection, including linkage of detection to other preparedness functions, and provides an update on recent progress.
CDC's Role in Early Detection Systems
CDC has played a key role in identifying and adopting national standards for data and system architecture to achieve the needed interoperable systems. The Public Health Information Network (PHIN) defines standards for technology, data, vocabulary, and information security to enable the consistent exchange of health, disease tracking, and response data among public health partners, protect the security of these data, and ensure the network's reliability in times of national crisis. PHIN addresses five major functional areas: detection and monitoring, data analysis, knowledge management, alerting, and response (1).
CDC also participates actively in key national standards development organizations to ensure that public health needs are considered as these national standards evolve. In 2004, CDC worked with Health Level 7, the leading international standards development organization that addresses clinical and administrative standards for health, to provide input on public health functions that should be considered as part of the recently balloted draft standard for trial use for electronic health records (EHRs). CDC also continues to participate in national consortia (e.g., Connecting for Health) to accelerate use of EHRs by providers (2). The more rapidly providers adopt standards-based, interoperable EHRs, the more readily a broader range of clinical data for early detection can be available electronically from more providers in both ambulatory and hospital settings.
Provision of funding for preparedness systems and personnel is also a key federal role. Since Fiscal Year 2002, CDC and the Health Resources and Services Administration (HRSA) have provided $1.1--1.4 billion dollars annually in funding to state and local health departments to enhance preparedness activities. The CDC and HRSA funding guidance to state health departments requires states to use PHIN standards when they invest preparedness funding in developing or modifying information systems (3).
The funding guidance also identifies specific functions that states must support, including enhanced surveillance and early detection capacity. Enhanced surveillance requires strengthening personnel and systems needed for surveillance, as well as strategic decisions about what approach to syndromic surveillance is appropriate for the specific local or state circumstances. This report discusses CDC contributions to this core state and local responsibility, first in the context of disease-specific surveillance and then in the context of systems that include surveillance of syndromes and prediagnostic data sources.
To enhance disease-specific surveillance, CDC is working with partners to implement the surveillance component of PHIN, the National Electronic Disease Surveillance System (NEDSS) (4). Disease-specific surveillance is relevant to early detection in multiple ways: 1) it might complement telephone notifications of unusual events; 2) it might detect outbreaks of which public health authorities were otherwise unaware; and 3) it can provide complementary information, and potentially infrastructure, to support syndromic surveillance activities. States can either use NEDSS standards to develop or modify state surveillance systems or implement the NEDSS Base System, a highly configurable software program developed by CDC and its partners to enhance surveillance at the state and local level (4). NEDSS incorporates multiple approaches to improve the timeliness and completeness of disease-specific surveillance systems that enable clinicians, laboratories, and local health department investigators to use the Internet to enter data into a database at the health department. This approach makes information on a reported case available at the state or local health department without the delays of data entry or mailing a form. As of April 2005, a total of 27 states* were using surveillance systems that utilize Internet-based data entry.
NEDSS standards also support automatic electronic laboratory result (ELR) reporting from a clinical diagnostic laboratory information system to state and local health departments for positive test results (i.e., those that identify a notifiable disease or condition). Communicable disease surveillance focuses on laboratory reports because a high proportion of notifiable diseases can be identified on the basis of laboratory test results. ELR has been well documented to increase the number of cases reported to public health two- to threefold, as well as to dramatically increase the timeliness of reports (5). As of March 2005, a total of 26 states were receiving ELR reports for certain conditions (e.g., hepatitis and meningitis) included in communicable disease surveillance.
NEDSS also supports electronic transmission of surveillance data about cases from states to CDC. Although all states currently perform this function through either the National Electronic Telecommunications System for Surveillance (NETSS) or NEDSS, the NEDSS notification format enhances surveillance by providing more complete information about each reported case and sending notifications as soon as the state approves the notification, rather than in a weekly batch.
CDC has developed BioSense, a secure early detection system accessible through the Internet that includes surveillance of syndromes. BioSense enables local and state health departments to view syndromic data relevant to their areas from multiple sentinel national data sources (e.g., Veterans Administration hospitals and military treatment facilities). This application has been described in detail elsewhere (6). BioSense accomplishes two key federal roles. First, it provides a single location for a state or local health department to monitor, instead of trying to identify signals from multiple Internet sites that use different data sources and different approaches to analysis and alerting. This approach also combines analysis of syndromic data with specimens collected in the same area through BioWatch, which places environmental air samplers in key locations (7). Second, BioSense provides a means of coordinating data requests and changes in analytic approaches with national data sources, which should be more efficient than attempting bilateral approaches between these sources and the 50 states or the thousands of local health departments. Realizing this efficiency requires a process for ongoing collaboration among all participants. BioSense also can function as a platform for evaluating utility of data sources, syndrome categorization, and analytic algorithms, in addition to providing an opportunity for collaborations to address key research questions.
CDC's involvement in syndromic surveillance at state and local health departments is a complex and evolving area. As states and local health departments consider whether to develop or enhance syndromic surveillance capacity within their health departments, what has been learned to date regarding the usefulness (or lack thereof) of various data sources should be incorporated into their plan. Assessing what level of population coverage for that area is already provided in national platforms (e.g., BioSense) is also appropriate. Pragmatic considerations include the availability of information technology resources needed to add and maintain additional data sources and the public health resources needed to investigate inevitable false alarms. Because it includes information from all states and all cities in which BioWatch environmental collectors are in use, BioSense can provide syndromic surveillance information for local health departments that do not have that capacity. The public health resources needed to investigate inevitable false alarms are also a concern with BioSense. However, local jurisdictions can work with CDC to determine levels of sensitivity and specificity that are appropriate for their areas.
CDC is planning to implement provision of data from regional and national data sources to the relevant jurisdiction. The availability of these data, whether from BioSense or from state and local systems, will provide opportunities for integrating surveillance systems; this integration will make increasingly moot the distinction between disease-specific systems and early detection systems that include syndromic or prediagnostic data.
Using PHIN standards for BioSense and for local and state information systems will facilitate interoperability across systems. CDC also is providing technical assistance and specific software tools for use by state, local, and federal partners to accomplish needed cross-cutting functions. For example, the PHIN Messaging System is software for standardsbased, secure bi-directional transport of messages between institutions (8). Interoperability also requires adherence to detailed national data standards, including defined controlled vocabularies. CDC is facilitating this process with the PHIN Vocabulary Access and Distribution System, which includes Internet-accessible standard reference tables (9). Implementing interoperable systems also requires a detailed level of specifications beyond the agreed upon, high-level standard. CDC has worked collaboratively with partners to provide that level of detail (e.g., through message implementation guides  that specify message format, including data content).
Substantial progress has occurred in the early detection area from the partnership among local, state, and federal public health entities. In 2005, BioSense received a substantial increase in funding, which should accelerate its ability to provide a wider range of data sources; partners are participating in a working group to help define the highest priority data sources. Accelerated progress depends on making preparedness systems interoperable and avoiding an isolated focus on early detection alone. This imperative underscores the complexity of the task, requiring concrete progress at the state and local level in implementing a PHIN-compatible surveillance, alerting, and response infrastructure, as well as accelerated progress by CDC in providing the needed specifications and tools. All partners are aware of the urgency, but also the difficulty, of accomplishing these public health objectives; continued consultation and iterative efforts are needed to ensure further progress. Finally, with the recognition that systems will continue to evolve, plans for evaluation and subsequent modification should be incorporated into the ongoing work.
The progress on PHIN, NEDSS, and BioSense described in this manuscript reflects the collaborative work of participants from local, state, and federal organizations who have provided vision, thoughtfulness, commitment, and unstinting hard work. This manuscript also benefited from thoughtful review by and comments from Henry Rolka, National Center for Public Health Informatics, and Robert Pinner, National Center for Infectious Diseases, CDC.
* Alaska, Arizona, Colorado, Delaware, Florida, Georgia, Idaho, Illinois, Kansas, Kentucky, Louisiana, Michigan, Nebraska, Nevada, New Jersey, New York, North Dakota, Ohio, Oklahoma, Oregon, Pennsylvania, South Carolina, Tennessee, Texas, Vermont, Virginia, and West Virginia.
Alaska, Arizona, Colorado, Delaware, Florida, Georgia, Hawaii, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Massachusetts, Michigan, Minnesota, Nebraska, New Hampshire, New Jersey, New York, North Dakota, Oklahoma, Oregon, Pennsylvania, Texas, and Wisconsin.
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Date last reviewed: 8/5/2005