*note: this link is for a very large .pdf file
The purpose of the protocol is to provide an overview of the functioning of the Hazardous Substances Emergency Events Surveillance (HSEES) system and the responsibilities of participating states and the Agency for Toxic Substances and Disease Registry (ATSDR). More detailed technical information can be found in the HSEES Training Manual (Appendix A)*, the HSEES Quick Reference Guide, the HSEES User Guide, Release Notes, and on the HSEES secure website.
In an attempt to describe the morbidity and mortality experienced by employees, first responders, and the general public that result from hazardous substances emergencies, a surveillance system has been developed that is currently implemented in 15 states: Alabama, Colorado, Iowa, Louisiana, Minnesota, Mississippi, Missouri, New Jersey, New York, North Carolina, Oregon, Texas, Utah, Washington, and Wisconsin.
The need for a state-based surveillance system for acute releases of hazardous substances was first suggested in a 1988 study on the sensitivity of three existing databases: the National Response Center (NRC), the Department of Transportation's (DOT) Hazardous Materials Information System (HMIS), and the Acute Hazardous Events Data Base (1). The study reported the shortcomings of any single national reporting source when trying to assess both the number and effects of hazardous substances emergencies. Of the 587 events reported to these three national databases during the study period, only eight (1%) appeared in all three systems.
The purpose of these databases was not to assess adverse health outcomes that result from hazardous substances emergencies, but rather to serve as a mechanism of enforcement or notifying other agencies (e.g., environmental, enforcement, commercial clean-up, insurance). The raw numbers collected by these databases do not describe the many variables that are associated with the morbidity and mortality resulting from these emergencies, nor do they stratify by populations (i.e., employees, responders, general population) affected. In addition, these databases are limited because of the number of events missed by failure of reporting as well as by the selective reporting of substances.
Barriers that have prevented establishing a surveillance system to assess the morbidity and mortality associated with hazardous substances emergencies include: 1) no legal mandate requiring these data to be reported, 2) no standard definition of an acute release of a hazardous substance, 3) no standard definition as to when an acute release of a hazardous substance begins and when one ends, 4) defining the geographic area of concern, and 5) identifying the exposed population.
Data that are collected by federal (e.g., USEPA, DOT), state (e.g., departments of natural resources) and local agencies focus on the release of hazardous substances into, and the effects of these releases, on the environment as end-points. These data are not adequate to fully investigate the many risk factors associated with the morbidity and mortality resulting from the release of those hazardous substances.
Therefore, a surveillance system which focused on the public health, and not the environmental impact, of hazardous substances emergencies was established in 1989 by ATSDR. Five state health departments participated in the 1990-1992 pilot phase of the HSEES system. By 1995, 14 state health departments were participating in the surveillance system, and by 2001, the number of participating states increased to 16. Currently, there are 15 participating state health departments.
Consistent with ATSDR's mission to "serve the public by using the best science, taking responsive public health actions, and providing trusted health information to prevent harmful exposures and disease related to toxic substances," ATSDR continues to make funds available for state health departments to participate in surveillance activities associated with hazardous substances emergencies.
The primary purpose of this program is to build capacity in state health departments to develop and maintain a state-based surveillance system for monitoring acute releases of hazardous substances and conducting appropriate prevention activities. The goal of this surveillance system is to provide data that can be used to reduce the morbidity and mortality resulting from hazardous substances emergencies. Reductions in morbidity and mortality should occur in first responders, employees, and the general public.
The objectives of the surveillance system are as follows:
The surveillance system is predicated on the ability of state agencies to document the total number of hazardous substances emergencies that occur within their state. Once the mandated state agency is notified, a means must exist to notify the state health department of the event (see "Notification of a Reportable Event"). Once the acute release of a hazardous substance is reported to the participating state health department, the components of the surveillance system consist of: 1) data collection, 2) data management, 3) data analysis, and 4) regular dissemination of reports to promote strategies to reduce morbidity and mortality.
State health departments should identify and develop memoranda of understanding with the state and local notification agencies in their states. In some states, this might entail one agency (e.g., state police or public safety). In other states, multiple agencies might be called in the event of a release or threatened release of hazardous substances. Since the primary focus of this project is to assess and potentially prevent acute adverse health effects, the state health departments need to be contacted within 48 hours of the release in order to have timely data entry (see Data Management section, 2. Timeliness and completion of events).
Effective January 1, 1993, participating state health departments began collecting data on hazardous substances emergencies meeting the following case definition:
In order to accomplish the objectives, both environmental and health data need to be collected. Environmental data are needed to identify the substance or substances involved in the release. Health data are needed to identify the public health consequences, morbidity and mortality, and evacuations associated with the event. The state health department must establish agreements with mandated or other appropriate notification agencies within their state to collect reports of hazardous substances releases. Information collected through these sources is used to complete all aspects of the web-based data entry system. States are no longer required to fill-out a hardcopy of the data collection form (Appendix B), however, all supporting documentation needs to be retained for at least three years. The hardcopy data collection form is reviewed and approved by the Office of Management and Budget (OMB) every three years. Minor modifications to the form are made at the time of renewal. The current data collection form expires on 11/30/2004.
Data collected in the web-based data entry system include the following items:
Complete investigation of an event may involve gathering information from several sources and entering the information from all sources into the HSEES web-based surveillance system. The web-based data entry system used by the states to collect the necessary data is designed to leave little room for misinterpretation. However, open fields have been provided for event-specific comments.
To further reduce the possibility of misinterpretation, a training manual for the web-based data entry system is provided to each participating state (Appendix A)*. The training manual is a quick reference to the types of responses which are acceptable and unacceptable in the HSEES system. The training manual provides explanations and instructions for each question in the data entry system. The training manual is provided to new states and to new personnel when joining the HSEES system. If the HSEES Coordinator is unable to answer a question after referring to the training manual, the coordinator should contact the ATSDR technical advisor.
Sources of information that the participating states can use to complete data entry include, but are not limited to, state police and fire departments, environmental agencies, various offices of emergency government, the manifest or inventory (depending on whether the incident is a transportation or a fixed-facility event), the incident commander's report, the National Transportation Safety Board (NTSB) report, the Red Cross (for evacuation center/shelter data), hospital admission and discharge records, information reported to the NRC, the media, emergency medical technicians' or ambulance reports, hospitals, poison control centers, and interviews with witnesses and victims.
Overall data management procedures are consistent with existing ATSDR policies and procedures. Participating state health departments are responsible for collecting HSEES data and entering it into the web-based application. ATSDR maintains one dataset consisting of the data from all participating states. ATSDR assigns industry codes (Appendix C) and chemical categories based on information entered into the system by the participating states. Data collected through the HSEES system consist of information on acute releases and not individuals. Therefore, no personal identifying information is collected.
One way to evaluate ATSDR's HSEES program is to measure the reliability of the system. Reliability is measured by the ability of the system to receive uniformly recorded data from the state health departments. To address the reliability of HSEES, ATSDR mails to participating state health departments each quarter a case study (provided by one of the participating states) that has the information necessary to complete data entry for an event. State health departments review the case study and complete a hardcopy data collection form which is returned to ATSDR. ATSDR compares responses on state submitted data collection forms to each other as well as to ATSDR preferred responses. Should ATSDR detect major inconsistencies in the completed data collection forms, issues in question may be addressed in subsequent correspondence or as an update to the training manual.
Analyses conducted by ATSDR include those using the combined data from all participating states as well as data specific to each participating state. These analyses include, but are not limited to, frequency distributions and cross tabulations of specific variables.
ATSDR provides participating state health departments and other interested parties with a report describing the results of data collection from all states for the specific annual period. ATSDR generates annual reports approximately 6 to 9 months after the end of the calendar year. Annual reports consist of a series of tables and graphs describing the results of data collection, in addition to a written summary of the data. In addition, ATSDR generates cumulative reports for specific blocks of time (i.e., 5 year data analysis).
The state health departments, by downloading their own state-specific datasets, prepare an annual report describing the results of data collection in their state for the specific year. The states may also perform descriptive and hypothesis testing analyses.
In all participating states, the Project Coordinator should work with the Principal Investigator to develop strategies aimed at reducing morbidity and mortality associated with acute releases of hazardous substances. State health departments who have participated in HSEES for three years or more need to conduct at least four activities each calendar year. One prevention outreach activity should be performed each quarter. At least two activities need to be supported by data from their state (data-driven) and involve a mix of target groups and primary and secondary prevention, while the other two activities can foster general awareness about the surveillance system. Instructions for formatting prevention outreach activities and corresponding logic models are presented in Appendix D. Prevention outreach plans and logic models for the following calendar year are due by December 31 of the current calendar year.
For state health departments who have participated in HSEES for less than three years, the schedule for conducting prevention outreach activities is as follows:
Tracking the audience numbers and evaluations of the data-driven activities is useful in demonstrating the system's effectiveness. Within two weeks of completing a prevention outreach activity, Project Coordinators will need to submit an Initial Assessment Form (Appendix E ) stating the actual audience number (i.e., the number of fact sheets distributed, the number of attendees at the conference session) and any anecdotal information or feedback about the activity. If ATSDR does not receive the Initial Assessment Form within two weeks, the participating state health department will be notified. ATDSR will also implement a new tracking system to more formally track evaluations of data-driven activities. The evaluations of data-driven activities will be linked to the effectiveness measures proposed in the prevention outreach plans (i.e., comparing the number of events and/or victims for a specified time period prior to the presentation/distribution of material to a specified time period after the presentation/distribution to see if the numbers decreased).
A summary of the initial assessments of the current calendar year's prevention outreach activities is due by December 31. The summary should also include evaluations of data-driven activities that were completed in the current calendar year.
Participating state health departments who are required to conduct four outreach activities will be scored on how many prevention outreach activities are completed each calendar year. Completed data-driven activities will be scored as 35% each and completed awareness activities will be scored as 15% each for a total of 100%. It is expected that participating state health departments will score 100%. For those scoring less than 100%, concerted efforts should be made to increase their score in subsequent years. For prevention outreach activities that can not be completed in the current calendar year, participating state health departments need to decide by December 15th if they wish to 1) request a one-month extension to complete the activity, 2) move the activity to the following year's prevention outreach plan, or 3) drop the activity.
If requested, ATSDR will assist the states in accessing other states' data or all states data to strengthen analyses for prevention outreach and identify similar types of events that are occurring regionally or system-wide; however, participating states do not routinely have access to the raw data from any other state.
Examples of awareness activities include distributing annual reports and presenting a general overview of the system to LEPCs, first responders and other interested parties. Examples of data-driven activities include analyzing county- or zip code-specific data for presentation to LEPCs; developing and distributing fact sheets on the most frequently released chemicals; providing HSEES data and collaborating with other state agencies to reduce mercury spills or meth lab events; and conducting a more intense evaluation of a previous year's activity.
Data clearance forms for prevention outreach activities need to be submitted by the Principal Investigators (Appendix F) along with the material to be reviewed for approval by the ATSDR technical project advisor. ATSDR will attempt to review these materials as quickly as possible, but each review of a draft may take up to two weeks, and more than one draft may be necessary. Therefore, states should allow a month for the overall review process.
Annual reports from the full dataset (all participating states) are disseminated to interested federal, state, and local agencies and the general public approximately 6-9 months after the close of the calendar year. Annual reports from 1995 on are also available from the ATSDR website.
States are encouraged to disseminate their data to those who can use it for prevention activities as well as to use their data for publications/presentations to appropriate audiences. Any data that is presented outside of the health department requires prior ATSDR approval before release or presentation. This includes quarterly, annual, and cumulative reports that will be released to the public or any agency, organization, or group outside of the health department (not just sent to ATSDR); fact sheets, graphs, tables, maps, and other compilations of data; posters, slides, and any written text of oral presentations; articles for publication in state or private newsletters, magazines, or journals; and analyses conducted by third parties, such as universities. If it is necessary to release raw data to an entity outside of the HSEES program, a data sharing agreement should be completed. Instructions on how to do this can be obtained from the ATSDR technical advisor.
Principal Investigators need to complete a data clearance form (Appendix F) and submit it with the material to be reviewed for approval by the ATSDR technical project advisor. ATSDR will attempt to review these materials as quickly as possible, but each review of a draft may take up to two weeks, and more than one draft may be necessary. Therefore, states should allow a month for the overall review process.
1. Binder S. Deaths, injuries and evacuations from acute hazardous materials releases. Am J Public Health 1989; 79: 1042-1044.
*note: this link is for a very large .pdf file