Several workshop participants noted that most of the efforts to prepare for a nuclear or radiological incident are focused on activities that take place days or weeks following an incident and pointed to several guidance documents as well as planning and training tools issued by federal agencies to support these early response activities (DHS-FEMA, 2010, 2016a; HHS-ASPR, 2016, 2017; HHS-CDC, 2014). However, little guidance, a few tools, and no exercises focus on preparing for the long-term recovery (months or years) after an incident. Dr. Armin Ansari (CDC) said that, as a consequence, there is little understanding within the emergency management community and in particular among those organizations that will be involved in recovery operations about what the “perfect” recovery plan would look like and what it takes to get the long-term recovery work done.
Dr. Kevin Yeskey (ASPR) and others added that there are fundamental gaps in the nation’s plans for recovery. One of those gaps is the lack of federal laws to support recovery operations. For example, the Robert T. Stafford Disaster Relief and Emergency Assistance Act (the Stafford Act), which is the main law designed to bring federal assistance to state and local governments, only applies to response to a disaster and not to recovery. As a consequence, available federally appropriated funds to plan for recovery-related issues are insufficient. Although CDC states that a registry needs to be established as early as possible after a radiation emergency,1 no laws
1 See Public Health Preparedness Capabilities at https://www.cdc.gov/nceh/radiation/emergencies/publichealthpreparedness.htm.
exist that allow for immediate follow-up of the populations affected by a nuclear or radiological incident including the setup of a radiation registry.
Experience from past public health emergencies shows that congressional authorization and appropriation and construction of codes and statutes to set up and operate a public health surveillance system such as a registry takes approximately 1–2 years. Dr. Jonathan Fielding (UCLA) noted that the delay between an emergency and mobilization of action can compromise public health surveillance. For example, delays in congressional supplemental appropriations hampered HHS’s ability to control the Ebola epidemic abroad and combat domestic cases of the disease (HHS, 2016).
Workshop participants offered for consideration a list of important pre-planning activities, that if addressed can help the emergency management community create a coherent and executable plan for setting up a radiation registry. The proposed activities were
- Engaging stakeholders
- Defining the purpose of a registry
- Agreeing on roles and responsibilities
- Linking immediate response to long-term follow-up
- Implementing radiation dose threshold as an inclusion criterion
- Screening for disease
- Preparing for long-term communications
Discussions around these activities were informed by expert opinions of the workshop participants and experiences and lessons to be learned from setting up registries in the past (radiation and other) in the United States and elsewhere. Some basic information on the purpose and operation of the registries discussed at the workshop is presented in Table 2.1.
Many workshop participants recognized that the list of pre-planning activities identified by workshop participants 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.
Dr. Daniel Sosin (CDC) noted that the sooner pre-planning for a radiation registry starts, the more time there is to appropriately identify the key stakeholders who need to be involved in decisions about setting up and maintaining a radiation registry. These stakeholders would be anyone with a mission, interest, influence, and expectations related to the purpose and outcomes of a radiation registry. Bringing the key stakeholders together early in the process, before there is an urgent need to set up the registry,
TABLE 2.1 Summary of Radiation and Non-Radiation Registries Described at the Workshop
|Title||Studies of the Atomic Bombing Survivors of Hiroshima and Nagasaki|
|Follow-up:||Ongoing; commitment for follow-up until extinction of survivors|
|Managed by:||Radiation Effects Research Foundation (RERF)|
|Sponsored by:||Department of Energy (United States) and Ministry of Health, Labour and Welfare (Japan)|
|Populations studied (size)||
|Dose above a threshold level as an inclusion criterion?||No|
|Major contributions||Understanding of health effects of radiation; fundamental information for radiation risk assessment and radiation protection standards worldwide|
|Workshop presenter||Dr. Eric Grant, RERF|
|Title||Chernobyl State Registry|
|Primary purpose(s)||Public health surveillance|
|Managed by:||Republican Research Center for Radiation Medicine and Human Ecology|
|Sponsored by:||Ministry of Health of Republic of Belarus|
|Populations studied (~total number of eligible people/participation rate)||
|Exposure above a threshold level as an inclusion criterion?||Only for group e|
|Major contributions||Information on doses to the exposed populations|
|Workshop presenter||Dr. Andrei Cheshyk, Republican Research Center for Radiation Medicine and Human Ecology, Belarus|
|Title||Fukushima Health Management Survey|
|Primary purpose(s)||Public health surveillance; research|
|Managed by:||Fukushima Medical University|
|Sponsored by:||Fukushima Prefectural Government|
|Populations studied (~total number of eligible people/participation rate)||
|Exposure above a threshold level as an inclusion criterion?||No|
|Major contributions||Concerns of over-diagnosis following thyroid screening; magnitude of mental health effects following the accident and needed resources for individual support|
|Workshop presenter||Dr. Koichi Tanigawa, Fukushima Medical University|
|Primary purpose(s)||Medical follow-up of those exposed to the accident; medical examinations and compensation|
|Managed by:||Centro de Assistencia aos Radioacidentados (CARA)|
|Sponsored by:||Government of State of Goiás|
|Exposure above a threshold level as an inclusion criterion?||Yes|
|Major contributions||Source of data for epidemiological and biomarker studies; understanding efficacy of Prussian Blue in decorporation of cesium|
|Workshop presenter||Dr. Dunstana Melo, Melohill Technology|
|Title||World Trade Center Health Registry|
|Primary purpose(s)||Public health surveillance; research|
|Managed by:||New York City Department of Health and Mental Hygiene|
|Sponsored by:||National Institute for Occupational Safety and Health|
|Populations studied||Rescue/recovery workers and volunteers at the site (9/11/01–6/30/02) and people who lived, worked, went to school, or were passersby in lower Manhattan (71,000)|
|Exposure above a threshold level as an inclusion criterion?||No|
|Major contributions||Important contribution to the literature on respiratory and mental health conditions of enrollees; link affected participants to services|
|Workshop presenter||Dr. Mark Farfel, New York City Department of Health and Mental Hygiene|
|Managed by:||Columbia University and collaborators|
|Exposure above a threshold level as an inclusion criterion?||N/A|
|Major contributions||One of few population studies on the topics; use of novel sampling methodologies|
|Workshop presenter||Mr. Jonathan Sury, Columbia University|
|Title||Vegas Strong Resiliency Center|
|Primary purpose(s)||Social recognition of the tragedy; link victims and families to resources|
|Event:||October 1, 2017|
|Baseline:||May 31, 2017|
|Managed by:||Legal Aid Center of Southern Nevada|
|Sponsored by:||In-kind contributions of local and state agencies and direct financial support through federal and state of Nevada grant funding sources|
|Follow-up:||4 years post-event|
|Populations studied||Anyone affected by the Route 91 Harvest music festival attack including survivors, family members of victims, responders, and those who witnessed the incident or tried to assist victims.|
|Exposure above a threshold level as an inclusion criterion?||N/A|
|Major contributions||Victim advocacy and support; free resources, including counseling and spiritual care referrals; technical assistance with applying for online services; free legal services|
|Workshop presenter||Jeff Quinn, Southern Nevada Health District|
|Title||U.S. Zika Pregnancy and Infant Registry|
|Primary purpose(s)||Public health surveillance/access to health care|
|Populations studied||7,400 completed pregnancies with laboratory evidence of possible Zika virus infection from December 1, 2015, to March 31, 2018, in U.S. states and territories|
|Exposure above a threshold level as an inclusion criterion?||N/A. Positive blood or urine test that confirms Zika infection was required|
|Major contributions||Understanding burden of disease; update clinical guidance for caring for families affected by Zika virus; developed a standard approach to surveillance of emerging threats to mothers and babies using longitudinal-linked mother–baby data|
|Workshop presenter||Dr. Peggy Honein, CDC|
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 time to resolve.
A number of workshop participants including Dr. Mark Farfel (New York City Department of Health and Mental Hygiene), Mr. Eddie Olivarez (Hidalgo County Health and Human Services Department, Edinburg, Texas), Dr. Monica Schoch-Spana (Johns Hopkins Bloomberg School of Public Health), Ms. Vivi Siegel (CDC), Dr. Daniel Sosin (CDC), and Mr. Jonathan Sury (Columbia University) drew on lessons to be learned from setting up registries in the United States and provided their opinions on key stakeholders that need to be engaged early in planning for a radiation registry. Those included
- Federal government agencies with public health responsibilities
- State, local, and tribal government offices with public health responsibilities
- Partner organizations such as
- Association of State and Territorial Health Officials
- National Alliance for Radiation Readiness
- National Association of County & City Health Officials (NACCHO)
- Radiation Injury Treatment Network (RITN) (see Sidebar 2.1)
- Local and community leaders
- Political and elected officials
- Contractors likely to be called on to supplement existing resources
- Public information officers and other communicators
- Members of the public
- The international radiation protection community
There was a general agreement that identifying and engaging with stakeholders is an iterative process that evolves throughout the development of a radiation registry. That is because additional groups who are affected by the incident might not be identified during early planning. For example, Dr. Farfel noted that in the case of the World Trade Center Health Registry, which was created to assess the physical and mental effects of the 9/11 attacks in New York City (Farfel et al., 2008; Gargano et al., 2018; Perlman et al., 2011), labor unions and local community stakeholders were engaged after the registry’s inception. These groups raised concerns that lower Manhattan was open for business prematurely following 9/11, potentially exposing residents and workers to hazards in the home, in their offices, and in the ambient environment. Members of these groups participated in advisory boards for the World Trade Center Health Registry and provided input on the type and scope of data collected.
Perhaps the first question stakeholders will need to address if a nuclear or radiological incident occurs is whether to set up a registry for long-term health monitoring of the affected populations. As there have been few incidents involving releases of radiation, the very nature of a nuclear or radiological incident alone may warrant strong consideration to create a registry. The incident will likely be the first of its kind and the potential to learn about its impact by creating a registry of the affected populations will be high. Additional obvious requirements for a radiation registry discussed at the workshop were that such a registry focuses on the well-being of the affected populations and benefits these populations, the research community,2 health care providers, and others. However, many workshop participants recognized that the decision to set up a radiation registry would involve additional considerations such as available resources, sociopolitical influences, and public concerns.
Dr. Robert Ursano (Uniformed Services University F. Edward Hébert School of Medicine), Mr. Jack Hearmann (ASPR), and others delivered a consistent message that the need for a radiation registry depends on how the affected populations perceive the risk they incurred following their exposure to radiation and not the actual risk. Experience with previous radiation incidents has demonstrated that psychological impacts affect the plans for population monitoring. Dr. Ursano used the plot of the psychological reactions to disaster with time cited in DeWolfe (2000) (see Figure 2.1) to demonstrate that reactions of members of the public to a disaster, including a nuclear or radiological incident, vary according to the phase of the disaster and with time during recovery. Therefore, public reactions and acceptance of a radiation registry will likely depend on when it is introduced and certainly on how it is communicated by the planners.
Experts who were involved in setting up registries recognized that a registry is most useful when designed for a specific purpose. Therefore, if the decision is made that a registry is warranted, Dr. Sosin noted that the purpose of the registry will need to be clearly defined. This purpose defines who to enroll; methods to reach out to eligible individuals; identifying appropriate comparison groups; what data need to be collected; the consent, authorization, and legal requirements that govern the registry; and the resources needed including personnel and funding. Dr. Betsy Kagey (Georgia Department of Public Health) noted that irrespective of the
2 The National Institutes of Health’s Disaster Research Response Program provides a framework for research on the medical and public health aspects of disasters and public health emergencies. See https://dr2.nlm.nih.gov for information.
purpose, a radiation registry would likely be a long-term commitment, and implementation costs are likely to be in the millions of dollars annually.3
Dr. Sosin, Dr. Schoch-Spana, and others contributed to the list of potential purposes of a radiation registry. Those were
- Medical monitoring of those who exhibited clinical symptoms related to ARS
- Public health monitoring of those affected4
- 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
3 Two presenters shared annual costs for their registries: the Fukushima Health Management Survey costs $20–$30 million per year and the World Trade Center Health Registry costs about $7 million per year.
Depending on the purpose, some registries may require only a listing of affected individuals and their contact information while others may require a repository of information that includes various demographic characteristics of the affected populations, exposure data, outcomes, and perhaps biological sample collection.
Radiation registries with research as their main focus are likely the most demanding in terms of data collection. Dr. Eric Grant (Radiation Effects Research Foundation [RERF]) described the processes to enroll and retain participants in the Japanese atomic bombing survivor studies. These studies are still ongoing with bi-national U.S.–Japan support, more than 70 years after the bombings. Dr. Grant also described the massive efforts to reconstruct radiation doses to the survivors by interviewing and administering mail survey questionnaires. Studies of the atomic bombing survivors continue to make important contributions to understanding the health effects of radiation and provide fundamental information for radiation risk assessment and radiation protection standards worldwide.
Dr. Sosin noted that it is possible that a radiation registry is set up to serve one goal (e.g., public health monitoring) and its goal is expanded over time. He cautioned, however, that not all purposes are compatible and raised concerns that the social and political issues involved in financial compensation for victims could interfere or complicate the public health monitoring purpose of a registry.
Advance agreement among stakeholders on the roles and responsibilities for setting up a radiation registry would help plan for a framework to which everyone subscribes. This common framework would alleviate confusion, duplicative or conflicting efforts, and competition for available resources that are expected to be scarce, especially following a mass casualty incident that also poses a threat to national security.
The question of “who is in charge?” was raised a number of times during the workshop. Two high-level officials from HHS (Drs. Yeskey and Sosin) acknowledged that currently the roles and responsibilities for setting up long-term health monitoring following a nuclear or radiological incident are ill-defined. Dr. Kevin Yeskey (ASPR) described his agency’s focus on lifesaving medical responses happening during the first days to weeks following an incident and on assisting with transitioning to recovery. Dr. Sosin (CDC) expressed his hope that the workshop would help his agency understand the emergency management community’s views on CDC’s role in setting up and maintaining a radiation registry.
Based on the discussions at the workshop, it became obvious that 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 stakeholders, would develop the framework for setting up a radiation registry, but its implementation is the responsibility of the state or local health authorities. Workshop participants discussed that the framework developed by CDC and others would include guidance, training material, templates of predrafted Institutional Review Board documents, Health Insurance Portability and Accountability Act (HIPAA) privacy and other confidentiality requirements, and data share agreements for setting up and operating a radiation registry. One advantage of this approach might be that it ensures some level of consistency in the setup of the registry. A second advantage is that the states and local jurisdictions affected by the incident lead the registry’s implementation using optimal approaches for the specific communities. One participant added that a third party like a university or a research organization could provide additional support to the state or local public health department tasked with operating the registry. Dr. Andrew Pickett (Pennsylvania Department of Health) compared elements of this approach to the Emergency System for Advance Registration of Volunteer Health Professionals, a federal program created to support states and territories in establishing standardized volunteer registration programs for disasters and public health and medical emergencies.
- CDC, with input from stakeholders, would develop a radiation registry template and then transfer it to the state or local health authorities to set up and operate the registry. Dr. Kagey argued in favor of this model because in her view the federal government has more resources including access to funding to initiate the registry at a time when the state and local agencies are likely still in the process of responding to the incident or in early stages of recovery. She compared elements of this model to the disaster medical assistance team. A drawback of this approach is that there may be multiple registries operated by different state or local health authorities for a single incident, and there will likely be inconsistencies among those registries that complicate communication of results and other activities.
- CDC, with input from stakeholders, would set up and operate the radiation registry. The main argument in favor of this approach was that a major nuclear or radiological incident such as an IND detonation would likely have multi-jurisdictional, statewide, or even multi-statewide consequences as potentially millions of
displaced persons will seek assistance to address their health needs from anywhere in the United States. CDC can ensure that information received from all affected states and local jurisdictions are treated consistently and in a coordinated manner.
- A fourth approach, which to some extent is a hybrid of those described above, was utilized by the U.S. Zika Pregnancy and Infant Registry. However, its potential applicability to a radiation registry was not explicitly discussed at the workshop. Dr. Peggy Honein (CDC), who described the Zika registry, said that CDC provided the framework for data collection and data agreements to the state and local health authorities, but the state and local health authorities performed the data collection. Then these authorities transferred the data back to CDC, which maintained a centralized registry and was responsible for reporting the adverse outcomes of Zika infections. Decisions on how the data were used and reported were made collaboratively through working groups that included federal, state, and local health partners.
Dr. Meghan McGinty (Johns Hopkins Bloomberg School of Public Health), who served as the deputy director of the Big Cities Health Coalition at NACCHO until 2018, noted that the support for one approach versus another will depend on state and local capabilities, and these differ considerably across the United States. She added that it is likely that state and local public health departments that have the resources and expertise may seek relative autonomy in setting up and maintaining the radiation registry, possibly with some federal support. However, state and local health departments that do not have the resources would rely on the federal government to set up and maintain the radiation registry.
Indeed, the New York City Department of Health and Mental Hygiene, one of the largest public health agencies in the United States, took the lead in 2002 in setting up and maintaining the World Trade Center Health Registry with initial financial and administrative support from the Federal Emergency Management Agency (FEMA), the Environmental Protection Agency (EPA), and ATSDR. The registry is now operated solely by the New York City Department of Health and Mental Hygiene with funding from the National Institute for Occupational Safety and Health. Dr. Farfel recognized the importance of collaborating with ATSDR to set up the registry because of the agency’s statutory mandate to perform functions such as health surveillance and registries. ATSDR, among other tasks, helped secure a contractor who assisted with creating the initial survey and then the database of potential registrants.
Ms. Tess Konen noted that the Minnesota Department of Health is well prepared to respond to public health emergencies and that public health
experts including injury and chronic disease epidemiologists are involved in the state’s emergency preparedness program. However, the department does not have experts in tracking psychological effects following a disaster. The Minnesota Department of Health would therefore turn to the federal government for support with that task. Mr. Pickett noted that only recently have public health experts become involved in the emergency preparedness program of the Pennsylvania Department of Health despite the state’s history with responding to the Three Mile Island nuclear power plant accident in 1979.
Dr. Sosin recognized that the United States has a history of government reorganization and changes to agency structures, roles, and responsibilities following major incidents. For example, after 9/11, Congress introduced homeland security legislation and approved a new cabinet-level department, the Department of Homeland Security (DHS), in 2002. After Hurricane Katrina, Congress introduced the Pandemic and All-Hazards Preparedness Act and created ASPR in 2006. Although Dr. Sosin did not explicitly discuss this, similar changes to the federal government could happen following an IND to enhance response and recovery efforts, and, therefore, roles and responsibilities for a radiation registry might need reassessing.
Following a large-scale, mass casualty nuclear or radiological incident, such as an IND detonation, the highest priority is to care for those who are critically injured. First responders who include personnel from the police, fire brigades, and health services will be the first to arrive and provide assistance at the scene of the incident, which could still be a high-threat environment. Mr. John Koerner (ASPR) noted that implementing a strategy to appropriately triage those exposed to high levels of radiation following an IND detonation will be challenging because of the large number of exposed populations. The Exposure And Symptom Triage tool was developed to enable rapid prioritization for appropriate treatment and transport (Hick et al., 2018).
Community Reception Centers (CRCs) or other triage locations are typically established by local and state authorities within 24 hours or so after the incident and are expected to be operating for several days or weeks. These are the locations where a large portion of those affected by the incident will report and be screened for radiation contamination and exposure.
Ms. Angela Leek (Iowa Department of Public Health) and others identified the following goals of CRCs:
- Triage incoming patients and victims to the appropriate care.
- In case of an IND, integrate patients into RITN for specialized treatment (see Sidebar 2.1).
- Identify people who may need further evaluation or need to be followed and evaluated for potential benefits from countermeasures.
- Identify people who are contaminated externally or internally and need to be decontaminated and those who are exposed.
- Collect information of potentially affected populations for possible inclusion in a radiation registry.
A number of workshop participants felt strongly that it is not possible to set up a radiation registry at the same time first responders and CRC staff are dealing with life-saving tasks because it may impact their ability to perform these tasks. Instead, those workshop participants discussed the need for planning in advance for the handoff of information collected during the first few critical days of the incident to registry planners. Three areas of planning were discussed:
- Capturing basic information early
- Screening for radiation contamination and assessing exposure
- Considering data systems needs
These three topics are discussed in the following sections.
Two tools aimed to assist with the initial information collection for long-term health monitoring were described at the workshop.
The first was the Rapid Response Registry (to be replaced by Epi CASE [Contact Assessment Symptom Exposure]), a tool developed by ATSDR to help local and state public health and disaster management agencies register responders and other persons exposed to hazards including nuclear agents from a disaster. This ATSDR tool involves completing a two-page form that can be distributed on paper or electronically and requires 5 minutes or less to collect basic information, such as demographics (e.g., name, age, sex, home address), health information, exposure information, immediate health and safety needs, and health insurance information.
According to the ATSDR website (ATSDR, 2015) for mass casualty events, four critical fields are sufficient to establish an official registry record and require only about 90 seconds to complete for each registrant. These are the registrant’s name, sex, home address, and telephone numbers. One participant argued that pregnancy status also needs to be included in the list of critical fields collected. This type of quick collection of basic information was referred to as “rostering” at the workshop. People who are rostered can be contacted when the community begins to recover and a registry is being set up. At that point, detailed information on the affected populations can be collected through surveys and interviews.
The second tool was the Community Reception Center Electronic Data Collection Tool (CRC eTool). This tool is intended for use at CRCs, and is designed to collect, analyze, visualize, and securely exchange population monitoring data including demographics, radiation contamination measurements, radiation exposure assessment, and health outcomes (HHS-CDC, 2018).
Ms. Leek noted that it is important to communicate with members of the public to keep track of where they were during an incident and also to record personal behavior information following the incident. This information, together with measurements of internal or external contamination performed at CRCs or other triage locations and maps of radiation levels in the contaminated areas, can assist with assessing individual exposures. However, it was evident from the discussions at the workshop that in the case of mass casualty or large-scale incidents, it is unlikely that detailed
exposure information will be collected and assessed soon after an incident. Instead, exposure information will most likely be collected through questionnaires or interviews and assessed later in the recovery phase.
Indeed, it was months after the Fukushima accident, when residents who agreed to participate in the Fukushima Health Management Survey were asked to provide information on their location and movements for the first 4 months following the accident and to identify activities that could have impacted their external exposure. This information was compared to maps of radiation levels in the contaminated areas to develop dose estimates. According to Dr. Koichi Tanigawa (Fukushima Medical University), at that point recollection among participants was faded and the likelihood of recall bias was high. The issue of recall bias was also discussed by Mr. Sury for assessing exposures to populations enrolled in the Deepwater Horizon Oil Spill Study 2 years after the incident.
Mr. Richard Kozub (Middlesex County Office of Health Services, New Jersey) supported the collection of only a few critical fields at CRCs because of the limited time that those who staff the centers will have with each affected individual following a large nuclear or radiological incident. He noted that during the 2017 Gotham Shield Exercise, his office operated a CRC to monitor potentially exposed individuals, decontaminate those exposed, and subsequently register people for follow-up monitoring, medical assessment, or medical management. For the exercise, the goal was to screen 7 million people. It was estimated that it would take 6 months to process that many individuals, if detailed information was collected. That throughput speed was not acceptable by the exercise planners.
Mr. John Koerner (ASPR) cautioned that although a portion of the affected population will report to the CRCs, others may report to local hospitals and medical centers in the vicinity of the incident or to these types of facilities further away. He said that similar to first responders, the burden of setting up a registry cannot be passed on to the health care providers either. Instead, health care providers can be informed that there are a few critical fields that are going to be useful and be prepared to collect and transfer that information to the registry planners.
Mr. Koerner’s comment also raised the issue of transferability of information from a medical or health care center to the registry. One of the lessons learned from the 2017 Las Vegas shooting at the Route 91 Harvest music festival was that transfer of information from health care providers to registry planners warrants pre-planning to ensure compliance with HIPAA. Mr. Jeff Quinn (Southern Nevada Health District) said that due to the high volume of injured citizens following the shootings, local available emergency medical services resources were quickly depleted and the majority of injured (approximately 800 people) were either self-transported or transported by private citizens to hospitals throughout the valley. Hospitals had
no notice of the shooting before the injured started arriving and patient tracking through the Multi-Agency Coordination Center was compromised because hospitals were hesitant to provide the requested information in fear of violating HIPAA. A report (ASTHO, 2018) recommended developing a template of essential elements of shareable information that would detail information that can and should be shared among coalition and community response partners.
Following a nuclear or radiological incident, CRCs and other triage locations will be offering screening for radiation contamination (external or internal), an initial assessment of exposure, and guidance for decontamination. These services are critical for planning for long-term population monitoring as they provide information about the number of contaminated or exposed individuals as well as the level of contamination or exposure. Therefore, they not only inform initial projections about the impact of the incident and its acute and long-term health effects in the community as a whole but also they provide the first evaluation of the effect of the incident on an individual’s health. Contaminated or exposed individuals might be particularly interested in participating in a radiation registry, when this is established, to receive a detailed dose assessment and an assessment of risk to develop disease later in life. For these reasons, a number of workshop participants cautioned that special attention is needed in setting the criterion for screening for radiation contamination and assessing exposure.
Guidance documents from FEMA (DHS-FEMA, 1995, 2002), the National Council on Radiation and Measurements (NCRP, 2005, 2008, 2010), IAEA (2005, 2006, 2011), the Conference of Radiation Control Program (CRCPD, 2006), and EPA (1992, 2013) describe factors to consider in deciding on a contamination screening criterion. Both EPA and NCRP state that the skin decontamination objective is to reduce the level to less than two times the level of background radiation.
CDC does not recommend setting a pre-determined, fixed screening criterion for radiation contamination to be applied to all people for all incidents under all circumstances (HHS-CDC, 2014). However, some workshop participants argued that without uniform standards for screening for contamination across the United States, the response effort may falter, and therefore, some pre-planning and additional guidance is warranted to ensure consistency and avoid confusion in the case of an incident. Ms. Leek made the point that without additional guidance, jurisdictions that establish CRCs will be setting different screening criteria for radiation contamination for those impacted by the same incident. The criteria they set will be based on the experience of those who perform the screening, the type of radiation
detection equipment used, and the number of people that they are expected to screen. Mr. Kozub and Dr. Kagey echoed the need for more specific federal guidance and argued in favor of incident-dependent but consistent screening criteria for radiation contamination across states so that affected populations feel they receive consistent messaging and treatment. Many recognized that the screening criterion for emergency workers might be different from that of members of the public.
The screening criterion for radiation contamination will define survey measurement readings that indicate levels where decontamination is warranted.5 Dr. Kozub noted that decontaminating those exposed is a resource intensive activity but suggested that the overall plans for decontamination following a nuclear or radiological incident remain flexible. He said it is likely that the number of people who will request to be decontaminated regardless of evidence of contamination will be more than anticipated. He reflected on the experience following the 9/11 terrorist attacks when New Jersey’s Middlesex County Office of Health Services was supporting New York with decontaminating individuals exposed to dust or dust clouds from the collapsing buildings. Although the instructions that were given to his office were to decontaminate the people that were obviously exposed, responders ended up decontaminating anyone who requested it.
Workshop participants also discussed the handoff of information from those involved in early response to an incident to those involved in recovery including the registry planners. This handoff raises at least two issues related to data systems that would benefit from pre-planning.
- Systems compatibility for merging information collected by different entities.
- Leveraging existing systems to build a radiation registry.
For (1), some workshop participants suggested that forethought be given to how the initial information (likely just rostering information) collected using different tools and systems by emergency responders, CRCs, medical providers, and others is transferred to the agency responsible for setting up the radiation registry months or years after the incident. A lesson to be learned from responses to past disasters such as Hurricane Sandy was the importance of different response entities having compatible systems to
5 There might be cases where decontamination occurs without survey measurements or an established contamination criterion to ensure prompt exposure reduction of potentially contaminated individuals.
collect information. Dr. Kozub said that in anticipation of and following the hurricane, the American Red Cross, the local jurisdictions, and Federal Medical Stations coordinated by ASPR were collecting information on affected residents using different systems. As a result, state officials who were ultimately responsible for evaluating the overall effects of the hurricane spent weeks hand-entering all of the data into a centralized system because it was not possible to electronically merge the information collected using incompatible systems. Dr. Sosin recognized that the issue of incompatible data systems also exists at the federal level, and that departments with significant responder roles including the Department of Defense, DHS, the Department of State, and HHS lack consistency when gathering information. Therefore, the ability within the federal government to integrate and share information effectively is compromised.
For (2), the time and resources needed to build a registry and collect and process the data can be substantial. Workshop participants therefore noted that pre-planning would also help in adopting existing public health system frameworks, including the processes for data collection and linking to existing data sources to reduce the burden on staff and participants. Without providing details, Dr. Sosin noted that a lesson learned from the response to three public health emergencies, H1N1, Ebola, and Zika, was the need to leverage, scale, and build on the systems that already exist.
Much of the discussion at the workshop was around the appropriateness of establishing a dose threshold as an eligibility criterion for the radiation registry. Choosing a threshold reflects the option to be more inclusive (lower threshold) or to be more resource-efficient (higher threshold) in monitoring the affected populations.
Implementing a radiation dose threshold as an inclusion criterion for a registry implies that a radiation dose is estimated by the registry planners using a common protocol and assigned to the affected members of the public. According to Dr. Till, achieving that requires extensive work to create a central repository of data supporting individual radiation dose assessment that is web accessible; integrate technical methods for radiation dose assessment with source, transport, and exposure scenario information; and implement new techniques and creative approaches to accelerate and facilitate estimates of dose. The assigned doses will likely be uncertain, especially if individual dose assessment happens 1–2 years after the incident, which is when the radiation registry is expected to be set up.
There is little international and no national guidance on the use of a radiation dose threshold for long-term population monitoring. The IAEA’s General Safety Requirements (GSR) Part 76 and the Triage Monitoring and Treatment (TMT) handbook authored by a consortium of European radiation protection organizations and WHO (Rojas-Palma et al., 2009) propose that those exposed to a 100 millisievert (mSv) or higher dose to the whole body are included in a radiation registry. Dr. Eduardo Herrera, who represented the IAEA, noted that the guideline is based on scientific evidence for potential increase in cancer incidence and mortality that derives primarily from the atomic bombing survivor studies. When asked whether the IAEA guideline had been informed by non-scientific considerations or whether it had been audience tested with emergency responders, public health professionals, or members of the public, he responded that it had not.
The three radiation registries presented at the workshop whose main purpose was research and/or public health surveillance did not have a dose threshold criterion for eligibility of participants. Instead, geographic location of exposure defined eligibility. More specifically, experts involved with setting up or analyzing data from these registries noted that:
- The Life Span Study (LSS), which investigates the lifelong health effects of the atomic bombing survivors in Hiroshima and Nagasaki, identified through the national census individuals who were residents in Hiroshima and Nagasaki at the time of the bombings. About 120,000 individuals were selected to participate in the LSS, of which 94,000 were atomic bombing survivors and 27,000 unexposed individuals.
- The Chernobyl State Registry categorizes participants based on whether they participated in clean-up operations; were residents who were evacuated from the 30-kilometer zone during the first 2 weeks after the accident; or were residents of the contaminated areas or children of those people.
- The Fukushima Health Management Survey included anyone living in Fukushima Prefecture at the time of the accident including officials registered in Fukushima and individuals who temporarily visited the prefecture.
Similarly, exposure did not define eligibility to non-radiation registries with research/public health surveillance purposes described at the workshop. For example, the World Trade Center Health Registry relied on recognizable streets and boundaries to determine eligibility for the registry. Dr. Farfel noted that the registry was criticized, particularly by community residents and labor unions, for having boundaries that were too restrictive.
In contrast to the research/public health registries described above, the registry established following the 1987 radioactive contamination accident in Goiânia, Brazil,7 used a tiered dose approach to define eligibility (see Table 2.1 for more information). The primary purpose of that registry was medical follow-up of those exposed to radiation from the accident and provided medical examination as well as monthly compensation that varies depending on the dose received.8 Dr. Luiz Bertelli (Los Alamos National Laboratory) described extensive efforts and approaches to estimating individual doses for those affected by the accident and to assessing the appropriateness of administering Prussian blue9 and its efficacy in decorporation of cesium.
Dr. Sosin argued that the decision about what threshold (if any) is appropriate following an incident in the United States will be a political decision driven by social factors and only partly informed by scientific evidence about radiation health effects. He emphasized the need for pre-planning to balance the scientific with political and social considerations.
Some workshop participants recognized that attempting to be “all inclusive” may be the best approach but others argued that the all-inclusive approach will add cost but not value, resulting in overly burdensome data collection that can compromise the quality of the radiation registry. Dr. Ursano noted that a threshold as an eligibility criterion may work for predicting disease such as cancer but might not address the stress-related psychological effects of the incident, which may occur independently of the dose. Therefore, a threshold as an eligibility criterion may not work for making the community feel safe. He added that if a radiation dose threshold is implemented as an inclusion criterion for a registry, it needs to meet both the community’s need to feel safe and the registry planners’ goals and available resources.
8 Verbal communication between Dr. Ourania Kosti (the National Academies) and Dr. Mel Dunstana (Melohill Technology LLC).
9 Prussian blue is a drug that can help remove radioactive cesium and thallium from the body.
In response to the different opinions on the appropriateness of a radiation dose threshold as an eligibility criterion for a radiation registry, Dr. Sosin proposed a tiered approach for data collection based on the dose received by the affected populations. Based on this approach, all individuals with high and moderate doses are enrolled in the radiation registry but only a sample of those who received low doses is included in the registry. He explained that the sample of the populations who received low doses can confirm that the risks are indeed low or provide new knowledge about the impacts of low radiation doses that may warrant a better designed study to fully examine them. Novel methods for identifying representative samples of a larger population were employed by Mr. Jonathan Sury (Columbia University) and colleagues to examine the physical and psychological effects of Hurricanes Katrina and Sandy and the Deepwater Horizon oil spill.
Given that an IND detonation and other radiological incidents would likely affect many states, workshop participants found that having consistent eligibility criteria for all affected is essential. Ms. Leek expressed her opinion that setting a universal threshold as an eligibility criterion for a radiation registry is unrealistic because the acceptability of radiation differs from state to state and from city to city. Dr. John Till (Risk Assessment Corporation) was optimistic that universal (but perhaps incident specific) criteria for inclusion in a registry could be set. He offered as examples the agreement within the radiation protection community in setting thresholds for administering countermeasures to members of the public and in defining acceptable dose to an emergency responder.
Populations affected by a nuclear or radiological incident will likely be encouraged by their health care providers to follow the screening recommendations of the U.S. Preventive Services Task Force for the general population to detect disease at an early stage and provide a better health outcome than if the disease were diagnosed at a later stage. The decision to perform additional screening, beyond what is recommended for the general population, could be an individual decision considering the person’s specific radiation dose estimate. Some additional screening could be offered by the radiation registry.
A radiation registry could pay special attention to diseases recognized as being associated with radiation exposure, for example, certain types of leukemia and thyroid, breast, and colon cancers, to name a few.
Dr. Steven Woolf (Virginia Commonwealth University) stated that decisions about a radiation registry’s screening policy following a nuclear or radiological incident begin with the core principles of screening, which apply to any condition (see Sidebar 2.2). In addition to balancing scientific evidence in relation to these principles, other considerations affect screening policies including costs of implementation, available resources, public expectations, and ethical and legal factors.
Experience from the Fukushima Daiichi Nuclear Power Plant accident demonstrated the challenges with decisions for screening of those affected. Dr. Tanigawa said that following the accident, thyroid ultrasound examination was offered to children aged 18 or younger to reassure members of the public that the doses received were low,10 and therefore, the health risks from the doses received were also low. However, the examination revealed an unexpectedly large number of thyroid cancers among children screened (200 cases to date) that could not be explained by the relatively low doses received. The screening findings caused public anxiety about the health effects of radiation and raised concerns within the scientific and medical community about over-diagnosis following thyroid screening.11
Dr. Kayo Togawa (International Agency for Research on Cancer [IARC]) noted that the concerns about over-diagnosis led IARC to convene a multi-disciplinary expert group to develop recommendations on long-term strategies for thyroid health monitoring after a nuclear accident. The expert group recommended against population thyroid screening after a nuclear accident but also that consideration be given to establishing a long-term thyroid monitoring program for higher-risk individuals (defined as those exposed in utero or during childhood or adolescence with a thyroid dose of 100–500 mGy or more) after a nuclear accident (IARC, 2018).12
A number of workshop participants pointed to decades of research and real-world experience that show that the public fears exposure to radiation more than any other environmental hazard and that situations involving radioactive materials have a remarkable capacity to produce widespread fear, a profound sense of vulnerability, and a continuing sense of alarm and
10 Dr. Tanigawa reported that the maximum, mean, and median values of estimated external radiation doses for the first 4 months after the accident were 25, 0.8, and 0.6 mSv, respectively.
11 Dr. Kayo Togawa (IARC) explained that screening has the potential to identify benign thyroid nodules and thyroid cancers that will remain indolent as well as those that will become clinically significant.
Dr. Ursano said that following a nuclear or radiological incident, some people will experience complete disruption of their lives, loss of friends or family members, or loss of jobs and social ties. Although most people are resilient and with time will recover from the tragedy, some will develop distress symptoms, changes in health behaviors, and psychiatric illness such as posttraumatic stress disorder, depression, anxiety, and increased alcohol and tobacco use. Exposure (or perception of exposure) to radiation contributes to the deterioration of one’s mental health. Following nuclear plant accidents (including Chernobyl, Fukushima, and Three Mile Island), there was also increased reporting of multiple idiopathic physical symptoms and multiple unexplained physical symptoms at emergency rooms and primary care facilities. Reporting of mental health symptoms was not dependent on
radiation dose received but on whether a person thought that he or she was exposed to radiation.
Dr. Tanigawa noted that the psychological effects of the Fukushima accident were beyond those anticipated. To mitigate these effects, the Fukushima Medical University launched telephone hotlines with clinical psychologists and other specialists who offered counseling to those who showed evidence of mental health deterioration based on responses to the mental health questionnaire of the Fukushima Medical Survey (Kumagai and Tanigawa, 2018). In 2012, the prefectural government established a dedicated center, the Fukushima Mental Health Care Center, to help cope with the prevalence of psychological effects.
Dr. Ursano noted that following a large-scale nuclear or radiological incident in the United States, available resources for large numbers of affected individuals may be limited, and Internet-based resources and treatments may expand care, although with decreased efficacy. He also noted that special programs for addressing the psychological effects of an incident on children not only have positive impacts on children’s well-being but on the well-being of the community as a whole because they provide some needed reassurance that the community’s future is being taken care of.
A common theme among the presenters and panelists was the importance of communications and public engagement at different stages of a response to a nuclear or radiological incident. Similar to other aspects of preparing for a nuclear or radiological incident, a series of tools is available to help with providing early, credible, and consistent information to the public.13 However, risk communicators including Ms. Vivi Siegel (CDC) and Dr. Brooke Rogers (King’s College London) noted gaps in planning for communications during the long-term recovery from an incident including the content of messages and who communicates those messages. Ms. Siegel explained that these gaps are to some extent expected because experts cannot predict future situations and what the communication needs will be. However, she argued that the responder and recovery community can anticipate concerns about long-term health effects including psychological effects within the affected communities and can plan for those.
13 Ms. Jennifer Wieder (EPA) informed the workshop participants that communication resources from different federal agencies are listed on EPA’s website under Protective Action Guide Public Communication Resources. See https://www.epa.gov/radiation/pag-public-communication-resources.
Ms. Jennifer Wieder (EPA) said that successful public communication about long-term health monitoring following a nuclear or radiological emergency will be determined by the ability of the communicators to build and maintain public trust from the start of the emergency. Trust-building within communities needs to start early in the response. Ideally, understanding who the community trusts needs to happen before an emergency occurs, at a time when the public is more likely to hear and understand the messages, compared to during an emergency, which is a high-stress situation. She presented a number of lessons learned from EPA’s experience in communicating with the public and building trust:
- Emotional concerns need to be addressed before providing facts.
- Comparisons of risks need to be chosen carefully.
- Repeating the same message is not effective; provide additional information or context around it, or change the wording to help people understand the message better.
- Empathy is important for trust building. Acknowledge people’s feelings even if scientific evidence related to risks from their exposure indicates that the feelings are unwarranted.
During the early response to an event, much of the communication is one way, and it involves the government or the agency responding to the incident, explaining what the incident is, and what one needs to do to be safe. However, communication during the first few hours of an event might be disrupted by damage to infrastructure including to cell towers and landlines, and slowed satellite communication due to extensive use.
Ms. Siegel said that communicators have done a good job of anticipating through research and audience testing many of the questions that they will receive from members of the public in the immediate aftermath and have pre-planned messages that can address these concerns. For example, the government has developed early guidance messages on social media for nuclear detonation, and they can be found in the ESF #15 Standard Operating Procedures guidelines (DHS-FEMA, 2016c). The public’s reaction to this messaging can impact the effectiveness of emergency response plans because members of the public can act or not act as advised depending on whether they trust the messenger.
Communication during a long-term situation such as recovery from a nuclear or radiological incident involves maintaining trust and building a long-term relationship with the affected populations. Communication experts present at the workshop said that there will be a need for continuing adjustment of the messages based on the evolving situation and the affected populations’ needs. In contrast to communication during the early response phase of an incident, communication during recovery is two way, and input and feedback from those affected is crucial.
The following communication experts offered opinions on the pre-planning needs for messaging related to the radiation registry:
- Mr. Tamer Hadi (New York City Department of Health and Mental Hygiene)
- Mr. Eddie Olivarez (Hidalgo County Health and Human Services Department, Edinburg, Texas)
- Dr. Brooke Rogers (King’s College London)
- Dr. Monica Schoch-Spana (Johns Hopkins Bloomberg School of Public Health)
- Ms. Vivi Siegel (CDC)
- Ms. Jessica Wieder (EPA)
The rapporteur distilled 10 key considerations for pre-planning long-term communications about a radiation registry from the experts’ presentations and comments. These are described in the following sections.
Develop Relationships in the Affected Communities
Every community is different, and understanding the characteristics of those affected is an essential first step to help ensure that a registry runs smoothly and efficiently. Specific groups within a community may require a particular communication tool, message, or strategy. Such groups can include vulnerable populations, those with disabilities, pregnant women, individuals whose first language is not English, and undocumented immigrants. Verbal and written communications about the radiation registry need to be appropriately designed to meet the language, cultural, and other needs of the affected communities.
Communicate Clearly the Purpose of the Registry
Registry planners need to communicate the purpose of the registry and what incentives (for example, free health care or financial compensation)
or links to resources are provided to participants. Similarly, it is important to communicate to participants as they join the registry and throughout the process information on who governs the registry, what health information is recorded, and what happens if something occurs along the way, for example, if a participant is diagnosed with cancer. By clearly articulating this information to those who are considering enrolling and periodically to those enrolled, the chance of setting clear expectations is increased.
Explain Eligibility for the Registry
If participation in the registry is not open to anyone interested but instead is determined by a set of inclusion and exclusion criteria, people who do not meet these criteria but are concerned about the effect of the nuclear or radiological incident to their health will feel that their concerns are neglected and will likely express their dissatisfaction to the registry planners. Their feelings may be intensified if participation at the registry is linked to resources such as health care coverage or financial compensation. On the other hand, there may be people who are eligible for participation but are concerned about the implications of being part of the registry such as “radiation stigma,” a social issue prevalent among Fukushima evacuees (NRC, 2014).
Make Complex Radiation Terms and Measurements Easily Understood by Members of the Public
Communicating eligibility for a radiation registry will likely require explaining the health impacts of different levels of exposure to radiation, how these exposures are determined, and the associated uncertainties. This task is complicated by disagreement within the radiation community about health risks at low doses of radiation and the use of different units by experts (for example, international system versus conventional units) to describe dose (NASEM, 2017). These issues may give the appearance of inconsistent public messaging and ultimately may lead to loss of trust in those who deliver it.
Explain Data Confidentiality and Data Security
Participants will need to know how the data collected are being stored and whether they are accessible to others. Participants will also likely have questions about how biological samples such as blood components and urine are being used if they are collected.
Communicate Findings of the Registry
Registry participants will want to know what the researchers found to feel that their contributions are appreciated and to use the information to make informed decisions about their health. Findings can be disseminated through reports, scientific articles, and other means.
Prepare to Deal with Emotion
For radiation registry participants, concerns about radiation will likely constitute only a part of the overall devastation caused by the incident, especially if the incident was large scale. As noted earlier, it is likely that some people will experience complete disruption of their lives, loss of friends or family members, or loss of jobs and social ties. For them, the registry might be a way to deal with the impact of the incident to their lives and registry planners need to show empathy to them and consider making resources available to the affected populations. Special recognition of the incident’s impacts during anniversaries is important to maintain a trusted relationship with the enrollees.
Prepare to Be Viewed as the Overall Incident Communicator
Experience with the World Trade Center Health Registry and other registries shows that registry communicators are perceived as communicators for the incident overall. This is because years after the incident, the initial communicators have moved on to different tasks, but the registry operators are committed to a long-term activity. Therefore, they are often asked questions about the incident that are unrelated to the registry they operate. Ms. Siegel suggested that registry operators accept how the public views them and prepare to direct people to the various resources for the incident.
Establish Social Media Presence and Build Awareness of Social Media Influences
Mr. Tamer Hadi spoke about the resistance of emergency management organizations, until recently, to embrace the use of social media as a means to communicate messages but also to monitor messages and understand what members of the public, press, and others think about the way in which the agencies communicate messages. Others pointed out that if the organization that operates the registry is not present in social media, then other actors outside the organization will fill the gap, and the lack of message coherence could undermine the radiation registry’s effectiveness. Dr. Schoch-Spana noted today’s trend for laypersons to more readily turn to
one another to share and interpret health experiences via social media as opposed to turning to the experts for information.
The New York City Department of Health and Mental Hygiene has successfully used a social media monitoring team during public health emergency responses including the response to Ebola and Legionnaires’ disease to understand what others think about the department’s response and use the feedback to help strengthen future communication (Hadi and Fleshler, 2016; Hadi et al., 2017). Mr. Hadi said that the concepts and implementations used by the department can be applied by any agency interested in social media monitoring. Agencies that do not have the capability to develop social media monitoring teams in-house can use a virtual operations support team.
Plan for Succession of Registry Communicators
Given the long-term commitment of a radiation registry (likely decades), there will be turnover in staff who manage the registry and communicate about the registry. Effective succession plans will help ensure the continuity of trust between the registry operators and the enrollees, and eliminate to the extent possible feelings of uneasiness and uncertainty among those enrolled during transitions.