In the United States, state and local agencies are responsible for population monitoring following a nuclear and radiological incident (HHS-CDC, 2014). The Department of Health and Human Services (HHS), through Emergency Support Function (ESF) #8–Public Health and Medical Services, has the responsibility of coordinating federal resources to assist state and local agencies with responding to the public health and medical consequences of such an incident (DHS-FEMA, 2016a,b).
ESF #8, when activated, is coordinated by the Office of the Assistant Secretary for Preparedness and Response (ASPR). The office’s focus is on life-saving medical responses happening during the first days to weeks following an incident and on assisting with transitioning to recovery. The Centers for Disease Control and Prevention (CDC) is responsible for assisting state and local agencies with long-term population monitoring including establishing a radiation registry.1 CDC also performs many of the administrative functions of the Agency for Toxic Substances and Disease Registry (ATSDR), an independent operating agency within HHS directed by congressional mandate to perform health surveillance and registries.
CDC states that a registry needs to be established as early as possible after a radiation emergency.2 However, there are fundamental gaps in the
1 The term “radiation registry” is used to describe a structured system for collecting and maintaining data on those affected by the nuclear or radiological incident. The data may need to be acquired, maintained, and updated over a long period of time, usually years or decades.
2 See Public Health Preparedness Capabilities at https://www.cdc.gov/nceh/radiation/emergencies/publichealthpreparedness.htm.
nation’s plans for recovery, including a lack of federal laws to support recovery operations and laws to allow for immediate follow-up of the populations affected by a nuclear or radiological incident. As a result, there are insufficient federally appropriated funds available to help plan for recovery. Experience from past public health emergencies shows that congressional authorization and appropriation and construction of code and statute to set up and operate a public health surveillance system such as a registry take approximately 1–2 years.
CDC recognizes that an effective analysis of how information collected immediately after the incident3 can be transferred to the registry planners likely months or years after the incident, what type of registry needs to be set up, and who to include cannot happen during the response to an incident when the emergency management community focuses on life-saving activities. Therefore, it identified the need for planning for the radiation registry in advance, before an incident occurs.
The March 12–13, 2019, National Academies of Sciences, Engineering, and Medicine (the National Academies) workshop on Challenges in Initiating and Conducting Long-Term Health Monitoring of Populations Following Nuclear and Radiological Emergencies in the United States provided a forum for exchanging information, sharing experiences and good practices, and expressing opinions on important activities related to planning in advance for a radiation registry.
Many of the discussions at the workshop were focused on planning for a radiation registry following a mass casualty incident such as an improvised nuclear device (IND) detonation that would affect a large number of people across multiple states. Participants’ discussions regarding important activities for planning in advance for a radiation registry can be organized in the following themes:
THEME 1: (Section 2.1) Engaging Stakeholders. Bringing the key stakeholders together before there is an urgent need to set up the registry is essential to build trust, discuss scientific and sociopolitical challenges that relate to setting up a radiation registry, and identify issues of possible disagreement that would require some time to resolve. Stakeholders who are expected to be involved in setting up and maintaining a radiation registry would be anyone with a mission, interest, influence, and expectations related to the purpose and outcomes of a radiation registry.
THEME 2: (Section 2.2) Defining the Purpose of a Registry. The purpose of the registry defines who to enroll; methods to reach out to those individuals
3 For example, creating a roster of the affected populations using existing tools such as the Rapid Response Registry developed by ATSDR.
who qualify for enrollment; what data need to be collected; the consent, authorization, and legal requirements that govern the registry; and the resources needed to operate the registry including personnel and funding. Workshop participants noted the following list of potential purposes of a radiation registry:
- Medical monitoring of those who exhibited clinical symptoms related to acute radiation syndrome
- Public health monitoring of those affected
- Access to health care for those affected
- Research on radiation health effects
- Financial compensation for victims
- Social recognition of the tragedy
- Outreach to those affected such as updates on new scientific and medical developments or new programs or policies relevant to the incident
THEME 3: (Section 2.3) Agreeing on Roles and Responsibilities. Two high-level officials from the federal government acknowledged that currently the roles and responsibilities for setting up long-term health monitoring following a nuclear or radiological incident are ill-defined. Stakeholder agreement on the distribution of roles and responsibilities before an incident occurs would help plan for a framework to which everyone subscribes and alleviate confusion, duplicative or conflicting efforts, and competition for available resources that are expected to be scarce. The state and local public health community expects CDC to have a central role in setting up a radiation registry. Four different approaches for CDC’s involvement were discussed at the workshop:
- CDC, with input from the stakeholders, develops the framework for setting up a radiation registry, but its implementation is the responsibility of the state or local health authorities.
- CDC, with input from the stakeholders, creates a radiation registry template and then transfers it to state or local authorities to set up and operate the registry.
- CDC, with input from the stakeholders, sets up and operates the radiation registry.
- The state or local health authorities perform the data collection for the registry and transfer the data to CDC, which is the responsible agency for operating a centralized registry and for reporting the adverse outcomes.
Workshop participants discussed advantages and disadvantages of the different approaches. It is likely that support for one approach versus another will depend on state and local capabilities and these differ considerably across the United States.
THEME 4: (Section 2.4) Linking Immediate Response to Long-Term Follow-Up. Workshop participants described three areas of pre-planning to help transfer information collected early in the response phase of a nuclear or radiological incident to radiation registry planners.
- Capture basic information on those affected
- Screen for radiation contamination and assess exposure
- Consider data systems needs
For (1), a number of workshop participants acknowledged that although it is important that collection of data for long-term population monitoring start as early as possible, it should not impact the responders’ ability to accomplish life-saving tasks and other early response priorities. Therefore, only a few critical fields such as name and contact information can likely be collected early in the response phase and be transferred to registry planners later in the recovery phase.
For (2), screening for radiation contamination and early exposure assessment can provide information on initial projections about the impact of the incident and its acute and long-term health effects in the affected community as a whole. They can also provide the first evaluation of the effect of the incident on an individual’s health. Therefore, screening for radiation contamination and early exposure assessment can affect decisions about the need for a registry and an individual’s interest to participate. Workshop participants asked for more guidance on how to set a radiation screening criterion following a large radiological incident to avoid inconsistencies across different states and local jurisdictions.
For (3), workshop participants discussed that the process of transferring information collected during the early response phase to registry planners raises issues related to system compatibility for merging information collected by different entities. They also discussed the importance of leveraging existing systems to build a radiation registry.
THEME 5: (Section 2.5) Implementing Radiation Dose Threshold as a Registry Inclusion Criterion. The decision about what dose threshold (if any) is appropriate for a radiation registry in the United States will be a political decision driven by social considerations and will only partly be informed by scientific evidence about radiation health effects. Planning in advance can help balance these considerations.
In the past, radiation registries whose main purpose was research or public health surveillance—such as the Japanese atomic bombing survivor cohort studies, the Chernobyl State Registry, and the Fukushima Health Management Survey—did not have a dose threshold criterion for eligibility of participants. Instead, geographic location of exposure defined eligibility. In contrast, the Goiânia registry, whose main purposes are to provide medical care and compensation for victims, used a dose above a certain threshold to define eligibility to the registry.
THEME 6: (Section 2.6) Screening for Disease. A radiation registry could pay special attention to diseases recognized as being associated with radiation exposure, for example, certain cancers and psychological effects, and screen for those. Decisions about screening for cancer will involve balancing scientific evidence in relation to screening principles and other considerations that affect screening policies, including costs of implementation, available resources, public expectations, and ethical and legal factors. Psychological health effects following a nuclear or radiological incident are expected to be significant because of the high perception of risk among those affected. Available resources for large numbers of affected individuals may be limited and Internet-based resources and treatments for psychological effects may expand care, although with decreased efficacy.
THEME 7: (Section 2.7) Preparing for Long-Term Communications. Experts in risk communication who presented at the workshop noted gaps in planning for communications during the long-term recovery from a nuclear or radiological incident, including what messages would be most useful and who would communicate those messages. Workshop participants discussed several pre-planning considerations for messaging related to the radiation registry. These considerations were that radiation registry planners need to
- Develop relationships in the affected communities;
- Communicate clearly the purpose of the registry;
- Explain eligibility for the registry;
- Make complex radiation terms and measurements easily understood by members of the public;
- Explain data confidentiality and data security;
- Communicate findings of the registry;
- Prepare to deal with emotion;
- Prepare to be viewed as the overall incident communicator;
- Establish social media presence and build awareness of social media influences; and
- Plan for succession of registry communicators.
Many participants recognized that the list of pre-planning activities identified during the workshop is not exhaustive and that ultimately, an exercise focusing on long-term recovery that includes setting up a radiation registry would reveal additional gaps and planning needs.