Report of the Tracking Network Workgroups Download as PDF [199 Kb]

Workgroup Recommendations

Workgroup 1: Organization and Management

This workgroup focused on the need for an expanded and redefined relationship between CDC and ATSDR and EPA as it relates to tracking. Although these agencies have collaborated on many issues over the years, the workgroup recognized that collaboration needs to be strengthened to ensure the success of the tracking program. EPA maintains many environmental hazard data bases at the national level and in state environmental protection agencies, and these need to be integrated with exposure and health outcome databases maintained by state public health agencies, CDC and ATSDR, and others. Additionally, interventions derived from analyses of linked data will in many cases need to be developed and implemented by both public health and environmental protection agencies.

Short-term recommendations

1. Representatives from CDC, ATSDR, EPA, and other partner organizations should meet with state public health and environmental protection officials to identify barriers to collaboration and determine ways to remove these barriers and enhance collaboration.
    
2. Lead tracking agencies in the states need to facilitate collaboration among all relevant parties because responsibility for critical health and environmental data often rests in disparate government agencies (e.g., state fish and wildlife, agriculture, and Medicaid agencies).
    
3. Relevant local public health and environmental agencies and organizations must be partners in tracking because a substantial amount of health and environmental data are collected at the local level, and disease prevention strategies are often implemented at the local level.

Long-term recommendations

CDC and ATSDR's Proposed Plan for an Environmental Public Health Tracking Network should be reviewed to determine whether it needs to be updated to reflect workgroup recommendations.

Request for Proposal (RFP) recommendations

1. Both public health and environmental protection agencies should be eligible to receive funding for tracking. Either entity can serve as the lead tracking agency and must tangibly demonstrate interagency collaboration through written agreements. (NOTE: After the development of this recommendation, Congress appropriated $17.5 million to CDC in fiscal year FY 2002 "for development and implementation of a nationwide environmental health tracking network and capacity development at State and local health departments." Thus, state environmental protection agencies and other entities within states were not eligible to apply for FY 2002 tracking funds. However, applicants should ensure and document that appropriate collaboration has been or will be established and maintained with state environmental protection agencies.)
    
2. RFPs should be tiered so that eligibility encompasses public health agencies with existing capacity such that they can begin some tracking activities immediately as well as agencies that propose to develop the infrastructure to implement tracking activities.
    
3. Essential public health and corresponding environmental functions should be integrated into RFP requirements.
    
4. Tracking program grantees should be given reasonable flexibility in the hazards, exposures, and health effects their networks will address.
    
5. Local agencies and organizations should be given sufficient fiscal and programmatic support to cover tracking program requirements and responsibilities. State-level grantees should be allowed to form consortia with such local agencies and organizations as necessary to further the aims of tracking activities, including the transfer of financial and other resources to such agencies.

Workgroup 2: Data Technology and Tracking Methodology

Workgroup 2 addressed issues related to information technology and its application to data acquisition, data management, and data analyses. This workgroup's charge was to recommend ways to apply new technologies to the development of a nationwide environmental health tracking network. Because of the complexity of this workgroup's charge and the resulting length of its report, only its principle recommendations are displayed below. Reference Attachment B for the complete Workgroup 2 report.

Recommendations

1. The EPHTN should be developed in cooperation with CDC's National Electronic Disease Surveillance System (NEDSS), EPA's National Environmental Information Exchange Network, and other national data architectures.
    
2. The EPHTN should consist of a system of distributed data sources, all of which can receive or send data. Data providers should, to the extent possible, maintain their data at their location, in the data's original form, in the data provider's preferred database, and in the preferred format.
    
3. The EPHTN should adopt metadata standards that allow users to find and use data available in the network.
    
4. EPHTN architects should work with federal partners and private standard-setting organizations to share, create, or modify data processing, performance, and technology standards.
    
5. EPHTN architects should adopt a formal technology-neutral methodology for modeling, analysis, and design of the tracking network. This will provide both an architectural framework and technical guideline for the surveillance facts of the diseases, conditions, environmental hazards, and environmental exposures relevant to the tracking network. Formal models should be developed to encompass the business model, workflow models, partner models, process models, use case models, options analysis models, data-flow models, and data models.
    
6. The EPHTN should identify, integrate, and make available tools for data analysis, interpretation, and presentation. To the extent possible, data dissemination should use automation tools, such that "the data find the user" rather than forcing users to repeatedly search for information when new updates become available.
    
7. EPHTN architects should explore developing relationships with private providers (e.g., physicians, administrators of health care plans, pharmacy staff, emergency department staff, poison control center staff, laboratory personnel) to gain access to nontraditional surveillance and tracking data sources.
    
8. EPHTN architects should ensure data sharing agreements exist between relevant agencies at the state and federal levels. These interagency agreements, or memoranda of understanding, allow agencies that collect data under specific legal authority to release those data to the agencies who need them for program and policy development planning. Such agencies include state and local agencies, EPA, poison control centers, the National Institutes of Health (NIH), the U. S. Geologic Survey (USGS), the Department of Energy (DOE), the Department of Housing and Urban Development (HUD), and the National Aeronautics and Space Administration (NASA).
    
9. EPHTN architects should develop a comprehensive information security plan and include technical specifications describing the plan in the construction of the network.

Workgroup 3: Tracking System Inventory and Needs Assessment

This workgroup's recommendations focus on capturing and strategically leveraging current and future opportunities. The recommendations aim to put in place the foundations necessary to develop and support environmental public health tracking. They emphasize coordinating and consulting between public health and environmental protection practitioners, linking existing tools, and sharpening a select few of the tools to better capture environmental health endpoints. At the same time, the recommendations envision the need for a successful tracking system to serve as a platform for creating the next major additions to the public health tool box, specifically through leveraging Health Insurance Portability and Accountability Act (HIPAA) standardization requirements for administrative and clinical encounter data, and renewing an appreciation for the role of public health laboratories in protecting public health and safety.

Because of the complexity of this workgroup's charge and the resulting length of its report, only its principle recommendations are displayed below. Reference Attachment C for the complete Workgroup 3 report.

Recommendations

1. As an initial step, the EPHTN should support states to create or build on links across health and related data sources for priority chronic disease and environmental health endpoints. Such links may be as simple as the co presentation of indicators for diseases and conditions of interest in a common medium (e.g., narrative report or geographic display), or as elaborate as fully integrated software systems, depending upon the state's current level of sophistication.
    
2. A demonstrated relationship between state departments of health and state environmental protection agencies (or their appropriate analogues) that will facilitate data linkage, interpretation, and development should be a prerequisite for health tracking support. Opportunities for connectivity and leverage include shared geographic information system (GIS) platforms, interdepartmental liaisons, ATSDR cooperative agreements, and state public health and environmental laboratories.
    
3. A) CDC, ATSDR, and EPA should establish a regular forum for intensive, hands on (applied) exchange between state and federal public health and environmental data developers, statisticians, and other users. B) CDC and ATSDR should facilitate evaluation of GIS for application to the EPHTN.
    
4. CDC and ATSDR should enhance core chronic and environmental health surveillance systems to better capture information about environmental exposures and conduct state pilots as part of the EPHTN.
    
5. Concurrently, CDC and ATSDR should improve the ability of existing systems to capture priority health endpoints.
    
6. CDC and ATSDR should actively and routinely survey the federal government's planned and ongoing studies for appropriate opportunities to integrate environmental health questions.
    
7. Tracking programs should focus on the increasing importance of ambulatory settings as sources of data because conditions of public health importance are increasingly being managed in these settings.
    
8. The EPHTN should support pilot projects to explore the trade-offs among different approaches to capturing epidemiologic data from the health services domain. For example, state public health officials should be encouraged to develop relationships with health plans or other sources of encounter data for the populations within their jurisdictions.
    
9. CDC and ATSDR should provide technical assistance to states in developing data-sharing agreements based on lessons learned by other public and private data sharing partnerships in the health services domain (e.g., state Medicaid agencies and their contracted managed-care plans and CDC's own collaboration with the American Association of Health Plans and the HMO Group). CDC and ATSDR also should ensure regular feedback from state experiences to HHS data standards groups (including the HHS Health Data Council, the National Center for Vital and Health Statistics, the Center for Medicare and Medicaid Strategies, the Public Health Data Standards Consortium, and HL-7). Finally, on the basis of states' experiences, CDC and ATSDR should advocate within these groups for relevant variables, metrics, and coding practices.
    
10. CDC and ATSDR should pilot a modified "State National Health and Nutrition Examination Survey" with a smaller questionnaire and much larger sample with target oversampling.

RFP recommendations

The RFP should give highest priority to applications proposing to strengthen surveillance for one or more of the high-priority health conditions (e.g., asthma, birth defects, cancer, neurologic illnesses). Alternatively, applicants could offer the candidate condition( s) with a justification as to why it is a priority. The applicants may consider linking existing health data systems or proposing new, innovative approaches to capture the desired information. The value of proposals also should be examined regarding the impact and applications for other states. Starting with the surveillance of a selected health condition as the key element, proposals may be submitted under one of the following tiers:

Tier	Health Surveillance: Level of Linkage
Tier 1: Basic	Developing and testing surveillance methodology for a given health condition(s). Focused only on linking health data systems. Health Surveillance Data Health Surveillance Data
Tier 2: Enhanced	Developing and testing or using an existing surveillance methodology for a given health condition(s) and exploring linkage to existing human exposure (i.e., biomonitoring) or environmental data bases                         Surveillance Data                                          Environmental Data            Biomonitoring Data
Tier 3: Advanced	Developing and testing surveillance methodology for a given health condition(s) and exploring linkage to existing human exposure (i.e., biomonitoring) and environmental data bases Environmental Data Biomonitoring Data Surveillance Data

The tier under which a state chooses to submit a proposal is assumed to be a function of the existing capacity and capability of that state. Thus, a state with rudimentary health tracking for the priority health conditions might opt to submit a proposal that would start at Tier 1 to begin to build basic capacity and capability. Similarly, a state with fairly advanced surveillance and environmental monitoring systems would be expected to submit a Tier 2 or 3 proposal. Proposals would be competed only within tiers. The ultimate goal is for all states to have the capacity and capability to link environmental, biomonitoring, and health surveillance data bases.

Consideration also should be given to proposals that chose to strengthen primarily biomonitoring systems. The following are of special interest: metals, pesticides, volatile organic solvents, persistent bioaccumulative toxicants, and EDCs. The applicants should address the development of analytical techniques and design and pilot a sampling strategy that would reflect the exposure status for the population of the state and/or a target subpopulation (e.g., children). Again the value of a proposal could also be examined as to how broad the impact and applications would be for other states. A tiered approach is envisioned:

Tier	Biomonitoring: Level of Linkage
Tier 1: Basic	Develop and test biomonitoring approach for population and subpopulation for selected class(es) of pollutants.
Tier 2: Enhanced	Develop and test biomonitoring approach for population/subpopulation for a selected class(es) of pollutants. and explore linkage to existing health surveillance or environmental data bases                         Biomonitoring Data                                          Surveillance Data            Environmental Data
Tier 3: Advanced	Develop and test biomonitoring approach for population and subpopulation for selected class(es) of pollutants, and explore links to existing surveillance and environmental data bases Environmental Data Biomonitoring Data Surveillance Data

Workgroup 4: Translation, policy, and public health action

This workgroup focused on developing recommendations that will help ensure that information developed by tracking programs will lead to effective public health actions. These actions include detecting new health events and unusual disease occurrences associated with environmental exposures, developing and implementing health policies and disease prevention strategies, monitoring and assessing the effects of these policies and prevention strategies, increasing citizen understanding of environmental health issues in their communities, and guiding research initiatives.

Short-term recommendations

1. Conduct focus groups of key target audiences to determine what they want and need from an EPHTN and share that information with the successful applicants for the pilot projects.
    
2. Establish a system for ongoing communication between CDC and ATSDR staff and all of the pilot program staffs. That communication should share lessons learned and early evaluations of success.
    
3. Hold an annual meeting for the pilot projects, the current workgroups, and other interested parties.
    
4. Provide a briefing of the Trust for America's Health staff once the final workgroup recommendations are consolidated. The briefing can be open to other interest groups and Congressional staff.

Long-term recommendations

1. Work with EPA to establish an indoor air monitoring program to identify key environmental tracking indicators that might be linked to critical diseases such as asthma.
    
2. Foster state and local health departments to fully implement their core capacities.
    
3. Ensure their surveillance research agenda addresses research needs that are identified in the pilot projects.
    
4. Continue to encourage a community-based research model.
    
5. Share research findings and agendas with other federal agencies, especially EPA and the National Institute of Environmental Health Sciences.
    
6. Establish a website to provide continuously updated information on the progress of the pilot projects and the overall status of the EPHTN.

RFP recommendations

1. Grant and cooperative agreement applicants should identify target audiences in their submissions. They should further specify how they would reach out to these groups for both planning and implementation purposes. Audiences should include:
    
   • The health community: federal, state, and local public health professionals; private health-care providers; the health insurance industry; and pharmaceutical companies
      
   • Affected communities: people affected by environmental factors and health outcomes, as well as advocacy groups for environmental and health causes
      
   • The media: TV, radio, journals, magazines, and newspapers involved in developing and delivering messages about environmental health issues
      
   • Politicians: Congress, the Administration, state governors and legislators, city and county political structures, and others responsible for funding and legislation affecting environmental public health tracking
      
2. Research to determine audience wants and needs should be undertaken at all levels (including the pilot projects).
    
3. Partnerships should be encouraged not only with local public health and environmental departments but also with key stakeholders such as schools, community advocates, local health-care providers, and local water boards. Applicants should identify specific steps for outreach to such organizations.
    
4. Grantees should allow full, public access to all data on the network with the appropriate medical confidentiality caveats.
    
5. Grantees are encouraged to use a wide variety of modes to present their data. Graphics should be used whenever appropriate (GIS mapping is an especially effective presentation and analytical tool). Tabular presentations, written text (especially "story telling"), and other methods should be also used as appropriate to the intended audience. The instruments for data presentation should also vary. Use of the Internet should include straight presentations, interactive standard queries, and independent analyses. Use of print materials and CD ROM formats should be considered as appropriate.
    
6. Tracking pilot projects should develop a public health action feedback loop. Surveillance should not be conducted for surveillance purposes alone. Rather, the tracking systems should be developed with the goal of positively affecting the public's health. Applicants should discuss in their proposals how they will design their programs to affect public health actions and a commitment to report on at least an annual basis their success in meeting one or more of the following public health actions:
    
   • Research: how disease "clusters" and possible links to environmental exposures were identified and research hypotheses generated from data analysis (e.g., children's cancer clusters possibly related to contaminated water supplies)
      
   • Policy changes: how new health or environmental policies were generated (e.g., requiring non arsenic-treated wood used for playgrounds)
      
   • Education: how public education efforts were undertaken to prevent future exposures to harmful environmental contamination (e.g., school campaigns to warn students about the dangers of playing with mercury)
      
   • Strategic interventions and prevention: how actions were taken by public health officials to interdict exposure or mitigate the affects of exposure (e.g., providing alternative sources of water if existing water supplies are found to be contaminated)
      
   • Linkage changes: how new partnerships were developed between organizations not traditionally associated with public health (e.g., forming new alliances between environmental and health agencies, with insurance companies, or with faith-based organizations)
      
   • Health provider training: how feedback loops were established with local physicians informing them about disease clusters in their communities and training them to diagnose and treat those diseases
      
   • Legislation and Regulation: how new or additional legislation or regulations were proposed to prevent continued exposure (e.g., banning smoking in public buildings)
      
7. Pilots should be chosen on the basis of greatest potential of success; however, some funding also should be directed for planning and capacity building.
    
8. The RFP should describe the EPA's National Environmental Information Exchange Network grant program and how these two programs can complement each other.

Summary

"It is clear that the U. S. needs to establish a national environmental health monitoring system which strengthens the surveillance of key health conditions in conjunction with monitoring the presence of pollutants in our bodies and the environments with which we come into contact. The recent, tragic events in the U. S. further reinforce the critical need to have access to reliable data on environmental exposure and disease outcomes. In times of crisis, the information is needed quickly and in a usable format." Source: Roundtable on Environmental Health Sciences, Institute of Medicine, The National Academies of Science, April 10-11, 2002, Background and Goals for the Workshop, Environmental Health Indicators: Bridging the Chasm of Public Health and the Environment.

We live in an era of major threats to our health but also in an era with unprecedented opportunities to conquer these threats. These opportunities include converging federal tracking-related initiatives that have significant political and citizen support and when coupled with advances in information technology and scientific breakthroughs, can revolutionize the practice of environmental public health in terms detecting and preventing disease, clarifying the role of our environment in disease causation, and empowering citizens and communities with information about the diseases and hazards in their communities. These opportunities include:

• Bioterrorism funding to the states that will enhance overall public health capacity and competency
   
• Major CDC and ATSDR tracking-related initiatives under way (in partnership with state and local public health agencies and the private sector) that will accelerate progress and that represent comprehensive approaches to disease surveillance. These primarily include the National Electronic Disease Surveillance System (NEDSS), an electronic information system architecture for use in the states that establishes data standards and is designed to automatically gather health data from a variety of sources on a real-time basis; and the eHealth Initiative, a public-private partnership addressing ways to rapidly capture and transmit such information as emergency department visits, diagnoses, and laboratory transactions using NEDSS.
   
• EPA's National Environmental Information Exchange Network, a new nationwide initiative with the states to build locally and nationally accessible, cohesive, and coherent environmental information systems. The goals of this program are to improve the quality of environmental data, provide agencies and the public ready access to these data, and increase the ability of state agencies and EPA to employ this information to protect public health and the environment.
   
• The NCEH and ATSDR Shared Vision that builds on the complementary strengths of both agencies
   
• Expanded support for biomonitoring, the exposure component of the tracking equation, both at NCEH and in the states
   
• Unprecedented opportunities to study gene-environment interactions and their relation to disease causation
   
• The $17.5 million FY 2002 appropriation to CDC to implement pilot tracking programs in the states

The tracking workgroup process identified numerous practical and valuable recommendations. The process brought diverse disciplines to the table and resulted in the development of new and redefined professional relationships among professionals representing many tracking-related disciplines. The creativity harnessed by this process will accelerate progress toward full and effective implementation of the tracking program as envisioned by The Pew Environmental Health Commission, CDC and ATSDR, and their partners.

Implementing an environmental public health tracking program is a high priority for CDC and ATSDR and their partners because it provides a strategic opportunity to address some of the most challenging public health problems facing local, state, and national public health and environmental leaders. Its successful implementation will provide information about the possible relations between environmental exposures and chronic and other diseases that can lead to interventions to reduce the burden of theses illnesses. CDC and ATSDR and their partners have a unique and historic opportunity to implement a program that will monitor and safeguard the health of all people living in the United States.