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Suggested Citation:"5 Meeting the Mission." National Academies of Sciences, Engineering, and Medicine. 2020. A Framework for Assessing Mortality and Morbidity After Large-Scale Disasters. Washington, DC: The National Academies Press. doi: 10.17226/25863.
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Suggested Citation:"5 Meeting the Mission." National Academies of Sciences, Engineering, and Medicine. 2020. A Framework for Assessing Mortality and Morbidity After Large-Scale Disasters. Washington, DC: The National Academies Press. doi: 10.17226/25863.
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Suggested Citation:"5 Meeting the Mission." National Academies of Sciences, Engineering, and Medicine. 2020. A Framework for Assessing Mortality and Morbidity After Large-Scale Disasters. Washington, DC: The National Academies Press. doi: 10.17226/25863.
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Suggested Citation:"5 Meeting the Mission." National Academies of Sciences, Engineering, and Medicine. 2020. A Framework for Assessing Mortality and Morbidity After Large-Scale Disasters. Washington, DC: The National Academies Press. doi: 10.17226/25863.
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Suggested Citation:"5 Meeting the Mission." National Academies of Sciences, Engineering, and Medicine. 2020. A Framework for Assessing Mortality and Morbidity After Large-Scale Disasters. Washington, DC: The National Academies Press. doi: 10.17226/25863.
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Suggested Citation:"5 Meeting the Mission." National Academies of Sciences, Engineering, and Medicine. 2020. A Framework for Assessing Mortality and Morbidity After Large-Scale Disasters. Washington, DC: The National Academies Press. doi: 10.17226/25863.
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Suggested Citation:"5 Meeting the Mission." National Academies of Sciences, Engineering, and Medicine. 2020. A Framework for Assessing Mortality and Morbidity After Large-Scale Disasters. Washington, DC: The National Academies Press. doi: 10.17226/25863.
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Suggested Citation:"5 Meeting the Mission." National Academies of Sciences, Engineering, and Medicine. 2020. A Framework for Assessing Mortality and Morbidity After Large-Scale Disasters. Washington, DC: The National Academies Press. doi: 10.17226/25863.
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Suggested Citation:"5 Meeting the Mission." National Academies of Sciences, Engineering, and Medicine. 2020. A Framework for Assessing Mortality and Morbidity After Large-Scale Disasters. Washington, DC: The National Academies Press. doi: 10.17226/25863.
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Suggested Citation:"5 Meeting the Mission." National Academies of Sciences, Engineering, and Medicine. 2020. A Framework for Assessing Mortality and Morbidity After Large-Scale Disasters. Washington, DC: The National Academies Press. doi: 10.17226/25863.
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Suggested Citation:"5 Meeting the Mission." National Academies of Sciences, Engineering, and Medicine. 2020. A Framework for Assessing Mortality and Morbidity After Large-Scale Disasters. Washington, DC: The National Academies Press. doi: 10.17226/25863.
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Suggested Citation:"5 Meeting the Mission." National Academies of Sciences, Engineering, and Medicine. 2020. A Framework for Assessing Mortality and Morbidity After Large-Scale Disasters. Washington, DC: The National Academies Press. doi: 10.17226/25863.
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Suggested Citation:"5 Meeting the Mission." National Academies of Sciences, Engineering, and Medicine. 2020. A Framework for Assessing Mortality and Morbidity After Large-Scale Disasters. Washington, DC: The National Academies Press. doi: 10.17226/25863.
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Suggested Citation:"5 Meeting the Mission." National Academies of Sciences, Engineering, and Medicine. 2020. A Framework for Assessing Mortality and Morbidity After Large-Scale Disasters. Washington, DC: The National Academies Press. doi: 10.17226/25863.
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Suggested Citation:"5 Meeting the Mission." National Academies of Sciences, Engineering, and Medicine. 2020. A Framework for Assessing Mortality and Morbidity After Large-Scale Disasters. Washington, DC: The National Academies Press. doi: 10.17226/25863.
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Suggested Citation:"5 Meeting the Mission." National Academies of Sciences, Engineering, and Medicine. 2020. A Framework for Assessing Mortality and Morbidity After Large-Scale Disasters. Washington, DC: The National Academies Press. doi: 10.17226/25863.
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Suggested Citation:"5 Meeting the Mission." National Academies of Sciences, Engineering, and Medicine. 2020. A Framework for Assessing Mortality and Morbidity After Large-Scale Disasters. Washington, DC: The National Academies Press. doi: 10.17226/25863.
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Suggested Citation:"5 Meeting the Mission." National Academies of Sciences, Engineering, and Medicine. 2020. A Framework for Assessing Mortality and Morbidity After Large-Scale Disasters. Washington, DC: The National Academies Press. doi: 10.17226/25863.
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Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

5 Meeting the Mission In the wake of a large-scale disaster, from the initial devastation through the long tail of recovery, protecting the health and well-being of the affected individuals and communities is paramount. Obtaining accurate and timely information about mortality and significant morbidity related to the disaster is critical to supporting the efforts of the disaster management enterprise at all stages to save lives and prevent further health impacts and specifically to guide response and recovery priorities and to ensure a common operating picture, real-time situation awareness, public health messaging, and protection of vulnerable populations. Conversely, failure to capture mortality and significant morbidity data accurately and comprehensively undercuts the nation’s capacity and moral obligation to proactively protect its population and acknowledge human suffering in a fair and consistent manner. Additionally, the increasing frequency and intensity of disasters underscores the financial imperative to reduce the direct and indirect costs of disaster by deploying data-guided mitigation and response practices informed by historical and prospective models of mortality and morbidity data. During the interim phase between disasters, mortality and morbidity data provide the foundation for evaluation, prevention, mitigation, and preparedness activities designed to reduce morbidity and mortality during future events. Beyond merely counting and attributing deaths and morbidities more accurately, better data on both the extent and causes of morbidity and mortality can be used to drive changes in policy, practice, and behavior. Disasters are complex and their health consequences are multifactorial. The foundational challenge in the assessment of mortality and morbidity data is the reality that many different approaches exist for quantifying the impact of a disaster and the persistence of the expectation that each disaster is represented by a singular toll. There is no one approach for assessing a disasters impact that can be applied across all disasters, and this inherently exposes mortality counts to manipulation and confusion concerning the true impact of a disaster. Individual counts—which estimate the total number of reported cases at an individual level and attribute the degree of relationship to the disaster for each—and population estimates—which apply statistical methods such as excess death to estimate the disaster impact at a population level—are the two main approaches for estimating mortality and morbidity. As discussed in Chapter 2 and in the subsequent chapters, each approach to assessment has unique benefits, weaknesses, and contexts for application. However, to avoid confusion and limit opportunities for manipulation, the processes for vital statistics, public health, and emergency response data systems must be improved. PREPUBLICATION COPY: UNCORRECTED PROOFS 5-1

5-2 A FRAMEWORK FOR ASSESSING MORTALITY AND MORBIDITY Extracting the maximum value from these data is dependent on having standard practices and systems in place for collecting and reporting accurate information, analyzing it appropriately, and translating data into action. However, it is difficult to coordinate these efforts effectively and uniformly across the disaster management enterprise, which is composed of a vast and intricate network of federal and state, local, tribal, and territorial (SLTT) systems as well as a plethora of stakeholders ranging from emergency management, health care, government agencies, the general public, policy makers, and the public and private sectors. The practices and systems currently in place are not robust, coordinated, or reliable enough to use mortality and significant morbidity data to their fullest potential. Instead, these systems and stakeholders are often splintered, siloed, and unable to rapidly disseminate information to one another. Mortality and morbidity data that are not captured uniformly across jurisdictions and agencies, meaning that identical incidents can generate differing mortality and morbidity figures depending on jurisdiction. Data collected under these circumstances are less conducive to comparative analysis and may exclude valuable data about deaths and morbidities that are indirectly or partially attributable by a disaster. In some cases, available data about mortality and significant morbidity are squandered because they are not or cannot be used to add value to disaster management or because existing systems are not deriving the optimal value from the data. Additionally, the accurate, consistent collection of disaster-related mortality and morbidity data is often not prioritized because critical stakeholders involved may not be aware of its importance. Despite this diverse set of challenges, there exist real opportunities to build stakeholder partnerships and cultivate adaptive systems for assessing morbidity and mortality, including using improvements within existing data (e.g., electronic medical records and claims data) and state and federal reporting systems. There is also great opportunity in investing in and conducting research to test and refine analytical approaches for developing population estimates as well as an opportunity to encourage a broader view of disaster morbidity and mortality and, by extension, a more nuanced understanding of the impact of disasters on human lives. MOVING FORWARD In its review of the current landscape of practices, systems, and tools for assessing mortality and significant morbidity following large-scale disasters, the committee identified several persistent, systemic challenges (see Box 5-1) as well as potential best practices that could be brought to scale. This final chapter of the report responds to these findings with a series of crosscutting recommendations that are intended to serve as a blueprint for moving forward. These recommendations couple short-term actions, which can be undertaken immediately for rapid impact, with long-term priorities, which are geared toward investments in the capacity and capability of the nation to capture, track, and use mortality and morbidity data to inform disaster management and save lives. Recommended immediate actions needed to address current gaps in policy, practice, and infrastructure for mortality and morbidity assessment include 1. Adoption and use of a uniform framework for collecting, recording, and reporting mortality and morbidity data (Recommendations 2-1 and 2-2). 2. Investment in improvements to data systems and tools for collecting, recording, and reporting individual count data at an SLTT level (Recommendations 3-1 and 3-2). PREPUBLICATION COPY: UNCORRECTED PROOFS

MEETING THE MISSION 5-3 3. Update of the Model State Vital Statistics Act and Regulations to facilitate more robust and uniform mortality data collection across the nation (Recommendation 3-2). 4. Creation of a process to develop, validate, and promulgate national standards for reporting on a core set of morbidity impacts specific to the common types of major disasters (Recommendation 3-3). 5. Investment in and development of the capacity to collect and analyze the data necessary for population estimates of mortality and morbidity (Recommendation 4-2) 6. Implementation of new tools and approaches to share and use mortality and morbidity data (Recommendation 4-3). 7. Consideration of a separate Emergency Support Function dedicated to mortality management (Recommendation 3-5). Recommended future priorities to strengthen the nation’s ability to prepare for and respond to disasters and emergencies of all types via the enhanced assessment of individual counts and population estimates of mortality and morbidity include 1. Integration of new technologies, as these become available, into existing electronic data systems and tools (Recommendation 3-1). 2. Investment in research to advance the science of mortality and morbidity assessment (Recommendation 3-1, 4-1, and 4-2). 3. Development and dissemination of resources for training professionals in the medicolegal death investigation system and for inclusion in SLTT disaster management (Recommendations 3-4 and 3-5). BOX 5-1 Foundational Challenges to the Assessment of Mortality and Morbidity Following Large-Scale Disasters • Pervasive variation across the nation in data collection and recording and reporting practices for mortality and significant morbidity at the SLTT level) (see Chapters 2 and 3). • A lack of prioritization of the accurate and consistent collection, recording, reporting, analysis, and use of data on mortality and significant morbidity by stakeholders across the enterprise (see Chapters 3 and 4). • Poor functionality of data systems to effectively capture, record, and report mortality and morbidity data across multiple stakeholders in a uniform manner (see Chapter 3). • A need for enabling and training on data collection, recording, and reporting and other support for medicolegal death investigation system professionals and SLTT agencies (see Chapters 3 and 4). • Individual counts and population estimation data that are available are not being used or lack usability for providing value to disaster management, and SLTT entities lack access to actionable data (see Chapters 3 and 4). • A need for additional research to develop and evaluate analytical methods for assessing mortality and morbidity and to create and test new tools (see Chapter 4). Applicability of the Committee’s Recommendations Beyond the Stafford Act As described in Chapter 1, the Statement of Task narrowed the intended focus of this report to disasters declared under the Stafford Disaster Relief and Emergency Assistance Act (Stafford Act), with infectious disease-related disasters determined to be not the primary focus of PREPUBLICATION COPY: UNCORRECTED PROOFS

5-4 A FRAMEWORK FOR ASSESSING MORTALITY AND MORBIDITY the committee’s deliberations.1 While the committee’s report reflects this guidance, the recommendations laid out in this chapter are broadly applicable to all types of disasters, including those of infectious origin, such as the COVID-19 pandemic. The committee shaped its recommendations around the development of the capabilities needed at a SLTT and federal level to improve the function and value of the nation’s systems and structures for mortality and morbidity assessment and to improve the use of the data from these assessments, regardless of disaster type or the even the presence of a disaster. Therefore, investment in the implementation of the policies and practices laid out in these recommendations represents a broader investment in the overall function and flexibility of the nation’s existing death investigation and registration system, in novel opportunities to collect and use data to protect human life and health and in supporting the kind of cross-agency coordination and partnership that can be tapped in a time of crisis. Guiding System Precepts In developing its recommendations, the committee members defined a series of guiding precepts that synthesize the ethos and key characteristics of their vision for a highly effective and responsive system (see Box 5-2) and the discrete steps that should be taken to move toward achieving this vision. These precepts prioritize access to detailed data to support mortality and morbidity attribution for all cases; real-time availability of data; interoperable data systems; functional tools to aid decision making using mortality and morbidity data; access to training and professional support; and universal stakeholder buy-in; among others. BOX 5-2 Guiding System Precepts A highly effective system for assessing morbidity and mortality of major disasters would: Collect and use data for community health protection as an essential component across all phases of disaster management The fundamental responsibilities of emergency management and public health—at every level and capacity—are to protect human health, support recovery, and prevent similar consequences from occurring in the future. High quality mortality and morbidity data can improve preparedness, mitigation, response, and recovery capabilities if they are widely accessible, appropriately analyzed, and used effectively. Efforts to improve the timeliness and accuracy of mortality and morbidity data should be underpinned by the broader ethos of saving lives, protecting health, and preparing for future disasters. Incorporate both individual counts and population estimates to better understand a disaster’s true effect The two primary approaches for assessing disaster-related mortality and morbidity, individual counts and population estimates, have important and complementary value. The committee sought to 1 The Stafford Act has very rarely been used to access federal support due to an infectious disease pandemic or epidemic. Unlike a natural disaster, which is likely to be localized or regionalized in its impact, a pandemic is likely to—and in the case of the ongoing COVID-19 pandemic shown to—rapidly and simultaneously overwhelm states, localities, tribal areas, and territories across the nation, necessitating coordinated federal assistance (see Chapter 1). PREPUBLICATION COPY: UNCORRECTED PROOFS

MEETING THE MISSION 5-5 balance the two approaches in contributing to a comprehensive picture of a disaster’s true effects. These estimation approaches have different uses, advantages, and drawbacks, but both are critical for accurately and comprehensively assessing and describing a disaster’s impact on human health and for developing and improving approaches to limit the future consequences of disasters. Leverage morbidity data as well as mortality data to support response, recovery, mitigation, and preparedness Focusing exclusively on disaster-related mortality—the traditional outcome of interest—is shortsighted. Using morbidity data—both during the crisis and in the inter-disaster period—to evaluate and guide disaster management efforts provides greater opportunities for reducing future mortality outcomes and increasing the resilience of the community. Build on and use existing systems, capacities, and methodologies Efforts to drive systems-level improvements benefit from using existing capabilities and capacities as well as identifying shared goals and existing resources to support stakeholders across fields and disciplines. Failure to strengthen the broader system for collecting, recording, and reporting mortality and morbidity data weakens the ability of the nation to respond effectively to changing health threats. Changes that occur only in siloes or at certain levels will be insufficient to optimize the use of mortality and morbidity data. Commit to the continuous improvement of systems over time Access to valuable individual counts and population estimates of morbidity and mortality is foundational to understanding a disaster’s impact. The specific data needs, appropriate tools, effective practices, and key stakeholders evolve over time; thus, systems need to respond by evolving in parallel. Adopting a systems-level learning approach can provide a foundation for continuously improving the integrity and interpretation of mortality and morbidity data, thus enabling greater protection of human life. Adopt an enterprise approach to activate stakeholders and systems in times of crisis as well as during the inter-disaster period Effectively collecting and using mortality and morbidity data requires collaboration across the disparate institutions and organizations that are directly and indirectly involved in disaster response, recovery, mitigation, and preparedness. An enterprise approach across the disaster management enterprise would unite stakeholders under common goals and mitigate the complexity of operationalizing improved practices and methods. Support the resilience and strength of historically disadvantaged populations by using data to understand, mitigate, and eliminated inequalities in disaster impacts Mortality and morbidity data can offer valuable contextual information about population-specific vulnerabilities and provide evidence for targeted mitigation and preparedness efforts in order to protect and improve the resilience of these populations. PREPUBLICATION COPY: UNCORRECTED PROOFS

5-6 A FRAMEWORK FOR ASSESSING MORTALITY AND MORBIDITY CONCLUSIONS AND RECOMMENDATIONS2 Organizational Leadership and an Enterprise Approach Critical to the success of the recommendations presented in this report is that the coordination of these disparate yet essential changes across multiple systems cannot be the responsibility of any one entity. All stakeholders are needed to commit to a coordinated enterprise approach, which allows all entities to overcome fragmentation, particularly in a time of crisis, and work toward a mutual goal. At present there is no singular federal entity or standard system that exists to oversee the operation of disaster-related mortality and morbidity reporting practices; these duties are largely in the domain of states, territories, and counties, and there are inadequate incentives for collaboration. However when a major disaster happens, federal agencies, which have existing systems and capabilities to carry out their non-disaster-related missions, could pivot and apply these resources to improved disaster reporting (e.g., Census Pulse survey; Epidemic Intelligence Service). This will require focused and clear leadership at the federal level. Such action will also encourage SLTT agencies to coordinate their efforts, develop and promulgate national standards for case definitions, adopt guidance on death record reporting, compile cross-state data, provide rapid training and develop education, and support materials for medical certifiers, among other outcomes. The organizational and logistical complexity of this problem will require all stakeholders—government agencies, medicolegal systems, public health offices, emergency preparedness offices, etc.—and particularly the leadership of each of these groups, to look beyond the day-to-day function of their respective independent agencies and organizations and apply, with creativity and purpose, those tools that they have at their disposal to force change for the benefit of the nation. While it is essential that federal agencies’ leadership consistently champion and invest in these improvements, the committee acknowledges that SLTT entities have a corresponding obligation to recognize the value of these changes and facilitate their operationalization. The committee stresses that no lasting change will be possible without this mutual commitment and coordination across systems and stakeholders. The individual recommendations presented in this chapter assign certain key actors to specific actions, but the successful implementation of these recommendations will require broad commitment from all entities and their leadership to rise up to meet the challenge of their collective mission. Conclusion 3-4: The implementation of an enterprise approach for improving the assessment of mortality and morbidity following large-scale disasters is essential to the implementation of systemic improvements involving a multiple, siloed stakeholders. Leadership at all levels—federal, state, local, tribal, and territorial—will be responsible for championing change. 2 Note that conclusions and recommendations are indicated in Chapter 5 by the chapter number and then by the order in which they first appear in that chapter. For example, Recommendation 3-1 is the first recommendation found in Chapter 3. The committee has developed 12 recommendations, which are presented collectively in this final chapter of the report. PREPUBLICATION COPY: UNCORRECTED PROOFS

MEETING THE MISSION 5-7 Conclusion 5-1: Times of crisis necessitate the adoption of cross-agency responsibilities designed to meet the mission for domestic action during disasters and emergencies. Uniform Framework and Terminology for Attribution Prior chapters have explored the multitude of terms that have been used to denote total mortality and to attribute the degree of a relationship between a death, injury, or illness and disaster as well as the reasons for the variety of terms. There is widespread variation in what is being assessed and the context in which it is being assessed as well as in how to record the strength of association of a case to a known disaster (see Chapter 2). Fundamentally, the lack of a consistently used framework of approaches for attributing mortality and morbidity across the nation results in inconsistent collection and reporting of data on the scope and causes of mortality and morbidity over time and across disasters. Conclusion 2-1: Current terminology and case definitions used to describe disaster-related mortality and morbidity fail to capture the differences in assessment methods used and the totality and temporality of disaster-related deaths and significant morbidity. The lack of a uniform framework for assessing disaster-related health impacts undermines the quality and usability of these data in informing disaster management. In response to this critical gap, the committee has provided a framework as a guide, which is based on the two main approaches for assessing disaster-related mortality and morbidity—individual counts and population estimates and parses out individual case definitions to characterize the level of attribution for all deaths (see Recommendation 2-1). The committee also emphasizes that each approach—individual counts and population estimates—represents an estimation of impact at a distinct point of time, within a specific context, and based on particular assumptions. Both approaches encompass distinct methods and techniques. Individual counting methods are valuable for understanding the immediate impact of disasters but are susceptible to weaknesses in the accuracy of recorded and reported data, and they fail to count certain individuals, such as those who die of natural causes during a disaster but who would not have died but for the disaster. By contrast, population estimates are critical for obtaining a full understanding of the health impact of a disaster, but they cannot say which individuals died of the disaster and which would have died even if the disaster had not arisen (see Chapter 2). The adoption of a framework that acknowledges the value of both individual counts and population estimates for quantifying and describing morbidity and mortality is foundational to the development of uniform practices for data collection, reporting, and recording of robust data that can be used to save lives. As such, adoption of and compliance with this framework may necessitate dedicated federal funding. Recommendation 2-1: Adopt and Support the Use of a Uniform Framework for Assessing Disaster-Related Mortality and Morbidity The Department of Health and Human Services and the Department of Homeland Security, including the Office of the Assistant Secretary for Preparedness and Response, the Centers for Disease Control and Prevention, the Centers for Medicare & Medicaid Services, and the Federal Emergency Management Agency, PREPUBLICATION COPY: UNCORRECTED PROOFS

5-8 A FRAMEWORK FOR ASSESSING MORTALITY AND MORBIDITY should adopt and support the use of a uniform framework for assessing disaster- related mortality and morbidity before, during, and after a disaster by state, local, tribal, and territorial (SLTT) entities; public health agencies; and death investigation and registration systems. To implement this uniform framework nationally, the National Center for Health Statistics in conjunction with state and local vital records offices, medical examiners and coroners, medical certifiers, and all relevant professional associations should jointly adopt and apply this framework to practice, including the routine use of uniform case definitions and data collection, recording, and reporting practices. Additionally, all Stafford Act declarations should require affected states and regions to comply with the reporting requirements for individual count and population estimation approaches as described in the framework. Timely guidance should be disseminated to SLTT entities regarding the proper certification of individual deaths with provision for direct, indirect, and partially attributable deaths following a large-scale disaster. The following terminology and approaches for defining mortality and morbidity following large-scale disasters should be adopted immediately: • Total reported mortality and morbidity estimation using individual counts: Individual counts are point-in-time estimates of disaster-related mortality and morbidity derived from reported cases. o Direct death or morbidity: A death or morbidity directly attributable to the forces of the disaster or a direct consequence of these forces. o Indirect death or morbidity: A death or morbidity not from a direct impact but due to unsafe or unhealthy conditions around the time of the disaster, including while preparing for, responding to, and during recovery from the disaster. o Partially attributable death or morbidity: A death or morbidity that cannot be tied definitively to the disaster but where the disaster more likely than not has played a contributing role in the death. o Unrelated death or morbidity: A death or morbidity that is unassociated or cannot be attributed to the forces of a disaster. • Total mortality and morbidity derived from population estimates: Population estimates are point-in-time estimates of the impact of a disaster at a population level derived using various statistical methods and tools, including sampling. Recommendation 2-2: Report Both Individual Counts and Population Estimates Both individual counts and population estimates should be used as accepted standards for reporting by state, local, tribal, and territorial entities and supported by the federal agencies as indicators of mortality and morbidity to determine the impact of disasters over time. State and federal reporting of total mortality and morbidity estimates following disasters should use both individual counts of direct and indirect deaths and population estimates of mortality and morbidity as these data become available following a disaster. Individual count data should be referred to as reported cases or reported deaths and should not be referred to as reflecting total mortality or a death toll. Total mortality estimates should be derived from population estimation methods, which provide a more complete assessment of overall impacts of large-scale disasters. PREPUBLICATION COPY: UNCORRECTED PROOFS

MEETING THE MISSION 5-9 Strengthening Systems and Practices for Conducting Individual Counts The collection of consistent and accurate mortality and morbidity data is dependent on the function and ability of the systems used to do so. Therefore, the absence of standard practices for attributing and recording reported individual-level disaster-related mortality information across SLTT entities is a significant barrier to the accurate estimation of disaster impact and the use of these data to save lives. As outlined in the chapter, there are several structural, operational, and philosophical reasons for the persistence of inconsistent policies and practices for the attribution and reporting of disaster-related mortality. Most challenging of these is the decentralized structure of the nation’s medicolegal death investigation and death registration systems, which provides an environment in which a diversity of data collection and recording practices are dependent on the structure of the local or state medicolegal system, the professional philosophies of the policy makers and practitioners within each system, and local professional education and training requirements (see Chapter 3). The committee stresses that the disjointed nature of the death investigation and registration systems is a detriment to the uniform and accurate collection and recording of mortality data and that uniform practices, system, tools, and professional standards are needed to strengthen the collection and attribution of individual disaster deaths at the local level. Conclusion 3-1: The heterogeneity of the nation’s systems of death investigation and registration prevents the accurate recording and reporting of disaster-related mortality data and impedes the meaningful analysis and use of these data to improve disaster management. Adoption of uniform practices for collecting, recording and reporting mortality data is needed, as is improved vertical coordination across stakeholders and improved interoperability of electronic systems among medical certifiers, state vital recorders offices, and the national vital statistics system. The committee recognizes that the inherent variation in death investigation systems and death certification significantly impairs the collection of quality mortality data and that medicolegal death investigation systems that feature a centralized medical examiner system may be better equipped to address the needs of the medicolegal system and specifically the assessment of disaster-related mortality (see Recommendation 3-4). However, the committee also acknowledges that the restructuring of the nation’s medicolegal death investigation systems is a long-term process that would require considerable federal intervention and legislative changes. Therefore, in the following recommendations the committee highlights other actions that could be undertaken immediately to address the need for uniformity in data collection and to move toward the development of coordinated or regionalized medical examiner systems as standard. These include the implementation of expanded responsibilities for federal agencies and SLTT entities to develop standards for and make improvements to data collection and reporting practices and systems. Recommendations 3-1 and 3-2 address a variety of operational, administrative, and data system challenges noted by committee members over the course of their deliberations. These challenges result from the breadth of different terminology and attribution practices in use across SLTTs and by different medical certifiers (also see Recommendation 2-1 for the committee’s recommended framework and terminology), poor prioritization of robust disaster-related mortality and morbidity data collection and PREPUBLICATION COPY: UNCORRECTED PROOFS

5-10 A FRAMEWORK FOR ASSESSING MORTALITY AND MORBIDITY recording, data system inadequacies for both medical examiner coroner electronic data systems and state electronic death record systems, a lack of access to data and tools for decision-making support, and the absence of a federal requirement for inclusion of disaster death information in the death registration process (see Chapter 3). Significant opportunity exists to rapidly enhance the baseline quality of data collected on mortality and morbidity following all disasters by SLTT entities through the universal adoption of a uniform process for data collection and reporting. In the case of individual-level mortality assessment, the committee feels strongly that these changes are unlikely to be achieved through mere modifications to the death certificate, which is a legal document that is legislated by each individual state. Instead, the committee recommends that the National Vital Statistics System should directly initiate the introduction of minimum data requirements by updating the Model State Vital Statistics Act to require medical certifiers to supply certain types of descriptive data to improve the attribution of a death to a particular disaster (see Chapter 3). Electronic data system improvements represent another area of promise for mortality assessment, specifically in relation to the reduction of the administrative burden on medical examiners and coroners, to the enhancement of coordination across systems and stakeholders, and to the improvement of electronic decision-making support for all medical certifiers. Efforts should be made to improve and build onto exiting systems wherever possible, rather than developing new data systems. Recommendation 3-1: Strengthen Existing Systems to Improve Individual-Level Mortality Data Quality The Centers for Disease Control and Prevention, through the National Center for Health Statistics (NCHS), should lead an enterprise-wide initiative to strengthen existing death registration systems to improve the quality of disaster-related mortality data at state, local, tribal, and territorial (SLTT) levels. These efforts should prioritize the standardization of methods for data reporting and recording and to improve the capacity of death investigation and registration systems to capture more detail on contributing causes of death following disasters. The following immediate actions should be undertaken: • NCHS should fund and support the transition of the remaining states and territories with paper-based death registration systems to electronic death registration systems (EDRSs) and lead, in collaboration with state vital records offices, the integration of best practices for capturing and coding disaster-related death data into state-based EDRSs. • NCHS should directly fund improvements in and the standardization of medical examiner and coroner (ME/C) death e-filing systems and require interoperability with these systems and state EDRSs. Similarly, NCHS and state registrars should require that EDRSs adopt the following standard improvements: o Automatic filing of death information with state EDRSs via ME/C e-filing systems to reduce the administrative burden on medical examiners and coroners o Automated and uniform alert flags, prompts, drop-down options, and decision-making support for use by medical certifiers when entering data into a death record in both a routine and just-in-time capacity PREPUBLICATION COPY: UNCORRECTED PROOFS

MEETING THE MISSION 5-11 o Offline data entry and other continuity mechanisms o Geocoding of deaths based on both place of residence and location of death The following long-term actions should be prioritized: • NCHS should fund and adopt where appropriate artificial intelligence technologies to improve the throughput of its automated medical coding systems so as to improve the throughput of ME/C deaths to a level equivalent to that of other natural causes of death. • State vital records offices and medical examiner and coroner offices, with the support of CDC, should develop continuity plans to sustain the functions of these offices during emergencies. Recommendation 3-2: Standardize Data Collection and Reporting of Individual- Level Reported Disaster-Related Mortality The National Center for Health Statistics (NCHS), working with the states, should update the Model State Vital Statistics Act to drive uniformity of data collection and recording with respect to disaster-related mortality. To promote uniformity in definitions and practices for collecting and recording disaster-related mortality data and enhance the quality and comparability of these data, NCHS should revise the Model State Vital Statistics Act to provide clear guidance and data standards to state vital records offices and medical certifiers. These changes should include the use of automated flags, prompts, and drop-down options to collect data on the relationship of a death to a recent disaster and provide decision-making support for medical certifiers. Standards for Morbidity Data Collection Collecting data about disaster-related morbidities presents its own set of challenges, given the broad definition of disaster-related morbidities; the influence of pre-existing and co- morbid conditions on post-disaster health outcomes; variation across disaster types; and logistical challenges associated with mining morbidity data from across a broad network of unique federal, SLTT, and local health care systems. Assessing health outcomes is a critical component in improving rapid responses following a disaster though the allocation of resources and targeted public health messaging as well as for improving prevention and mitigation activities during the inter-disaster period. When acted on appropriately, morbidity data can help to reduce mortality (i.e., by preventing morbidities from becoming mortalities) and can be used to help shape public health messaging and medical preparedness. For end users in the field of disaster management, in particular, estimates of morbidity resulting from a disaster may actually be of more value than mortality data in informing life-saving mitigation and preparedness activities and in enhancing real-time response. An exclusive focus on mortality data, the traditional outcome of interest, at the expense of morbidity data is tantamount to focusing only on the worst cases. Morbidity data collection and recording presents different challenges than the collection and recording of mortality data. First, although mortality data collection and recording systems require extensive improvement, the basic structure of these systems and their supporting administrative and methodological processes for collecting individual level mortality data already exist. This is not the case for disaster-related morbidity data. Additionally, morbidity involves a wider range of data and data sources, such as hospital admissions data, electronic PREPUBLICATION COPY: UNCORRECTED PROOFS

5-12 A FRAMEWORK FOR ASSESSING MORTALITY AND MORBIDITY health records and syndromic surveillance systems, records from disaster medical assistance teams, and data from sheltering operations. The types and severity of the significant morbidities that occur following an disaster also vary widely and tend to be disaster-specific (e.g., burns are not likely to spike following a major flood and near-drowning incidents are unlikely to occur during a wildfire) making it difficult, but not impossible, to standardize policies and practices for data collection for reported cases of morbidities. Despite this variation, past research into disaster-related morbidity suggests that key morbidities may exist across common types of disasters and further suggests that these morbidities could be used to define a standard set of data that could be tracked to inform disaster management policy and practice. Defining what morbidity data to collect is a critical first step to building the capability to collect and use these data. Therefore, investment in an ongoing process is needed to develop, validate, and disseminate national standards for data collection of key morbidities caused or exacerbated by specific types of disasters. Conclusion 3-5: Collecting morbidity data presents an additional challenge due to the large quantity of possible outcomes and data available across multiple unique systems. Understanding which data are of greatest value and how these data can be used to inform disaster management requires more research. Conclusion 3-6: Standards for morbidity data are needed across different types of disasters. A standard data set by disaster type would dramatically improve the uniform collection of morbidity data. This will improve the usability and actionability of these data. Recommendation 3-3: Develop a Set of Standards for Morbidity Data Collection The Centers of Disease Control and Prevention, in collaboration with the Centers for Medicare & Medicaid Services, the Council of State and Territorial Epidemiologists, and the National Association of County & City Health Officials should establish and promulgate national standards for the collection of disaster- related morbidities before, during, and after disasters. These activities should include investment in research to identify common morbidities that occur as a result of or are exacerbated by the conditions of specific types of disasters (e.g., floods, hurricanes, blizzards, radiation events, pandemics, etc.) and across multiple disaster types. This should include the identification of minimum timelines for data collection, the development and validation of morbidity data systems for use by the disaster management enterprise, and pilot testing and implementation of approaches to collect these data in a standardized manner. Improving the Use of Analytical Methods for Population Estimates Statistical estimation methods, in contrast to individual counting approaches, generate a more complete picture of the total impact of a disaster on health outcomes, but they do not yield an allocation of individual cases into mutually exclusive categories of death or illness resulting from the disaster versus from other causes. Given the variation in ways of attributing the cause of any death and morbidity, there can be more than one appropriate approach for answering the question “How many deaths and severe morbidities were caused by this disaster?” Still, these PREPUBLICATION COPY: UNCORRECTED PROOFS

MEETING THE MISSION 5-13 estimates can be more complete than those derived from case-counting methods, which tend to systematically undercount morbidity and mortality in major disasters, and they are thus critical for understanding the total impacts of disasters. There is no standard method for generating mortality or morbidity estimates. Nevertheless, methodological best practices can be specified, and a national research program is vital to further develop and validate these and to indicate appropriate circumstances for their uses. As in all areas of research, these practices would benefit from clarity in the specification of study objectives and definition of terms, by transparency in the statement of assumptions and the sourcing of data used in the study, and by great caution in advancing any particular measure or method as a perfect solution. Conclusion 4-1: Given the variation in ways for attributing the cause of any death and morbidity, there can be more than one appropriate approach to answering to the question “How many deaths and severe morbidities were caused by this disaster?” Nevertheless, methodological best practices can be specified, and a national research program is urgently needed to identify, further develop, and validate these practices. As in all areas of research, these best practices are characterized by (1) clarity in the specification of study objectives and definition of terms, (2) transparency in the statement of assumptions and the sourcing of data used in the study, (3) continued testing and improvement of the accuracy of measures, and (4) caution in advancing any particular measure or method as the single perfect solution. Developing an effective data and information structure for studying disaster impacts on mortality and morbidity should be a cornerstone of the nation’s operational disaster response function. Because the necessary analytical sophistication and high-quality fieldwork are generally beyond the capabilities and time availability of most SLTT health departments, the Department of Health and Human Services (HHS) should build and sustain the capacity of the nation’s existing research and survey infrastructure to support the collection of survey data on the health effects of disasters. Conclusion 4-2: Developing an effective data and information structure for studying disaster impacts on mortality and morbidity should be a cornerstone of the nation’s operational disaster response function. Because the necessary analytical sophistication and high-quality fieldwork are generally beyond the capabilities and time availability of most SLTT health departments, it is essential that federal partners work to build and sustain the capacity of the nation’s existing research and survey infrastructure to support the collection of survey data on the health effects of disasters. Recommendation 4-1: Fund and Conduct Research on Analytical Methods for Population Estimates The Centers for Disease Control and Prevention, the National Institutes of Health, and the National Science Foundation should establish a national research program to advance analytical methods for conducting population-level estimates of mortality and morbidity related to disasters. This national research program should include the development and refinement of minimum standard methods and protocols for PREPUBLICATION COPY: UNCORRECTED PROOFS

5-14 A FRAMEWORK FOR ASSESSING MORTALITY AND MORBIDITY conducting population-level mortality and morbidity assessments as well as the creation and testing of tools for use by researchers, states, and localities to enhance their capabilities to carry out and use these analyses. • Academic departments and institutes, which can be more flexible in initiating and conducting studies, should be included in these research efforts. • Since many of the estimates in the literature result from “one-off” efforts that do not build on or seek comparability with previous disasters, an initial step in this research should be a careful comparison of different estimates from the same emergency to gain an understanding of how methodological choices and assumptions affect the estimates. Recommendation 4-2: Enhance Capacity to Collect and Analyze Population Estimates for Mortality and Morbidity The Department of Health and Human Services, together with state, local, tribal, and territorial (SLTT) agencies, should proactively develop partnerships to enhance the capacity to collect and analyze population-level disaster-related morbidity and mortality information. This includes the identification of appropriate mortality and morbidity datasets and sampling frames that might be brought to bear and the pre- negotiation of data-sharing agreements to ensure access to these data when needed. The following immediate actions should be undertaken: • The Secretary of Health and Human Services should push forward the collection of survey data on disaster-exposed and comparison populations to provide population-representative data on how disasters and their contributing stressors affect morbidity and to build the evidence base on differences in mortality and morbidity impacts across types of disasters. • The federal statistical system, including the Centers for Disease Control and Prevention (CDC), the Substance Abuse and Mental Health Services Administration, and others should harness existing survey infrastructure and develop standard, institutional review board-approved sampling frames and methods for dealing with methodological challenges, such as population migration, for use by researchers conducting population estimates following large-scale disasters. • The stakeholders listed above should address issues with informed consent procedures under the Common Rule, respondent burden issues under the Paperwork Reduction Act, and privacy under the Health Insurance Portability and Accountability Act Privacy Rule in advance and ensure alternative arrangements to protect privacy and confidentiality. • SLTT agencies and academic research centers with the capability of conducting population estimates of disaster impact should formalize working relationships, data-sharing agreements, and Institutional Review Board approvals in advance of a disaster to reduce delays in access to health data needed to conduct population estimates following a disaster and develop baseline assessments during the inter- disaster period. • CDC and the Federal Emergency Management Agency should integrate frontline public health practitioners (e.g., epidemiologists and others) in the disaster PREPUBLICATION COPY: UNCORRECTED PROOFS

MEETING THE MISSION 5-15 response teams to help gather data and begin detailed analyses of mortality and morbidity data early in the disaster. Access to and Use of Mortality and Morbidity Data The committee strongly believes that the collection of mortality and morbidity data should be founded on the intention to use those data for the protection of human life and, in particular, that the data should be used in a manner that supports the resilience of vulnerable populations. Because disaster-related mortality and morbidity data are not yet systematically used in disaster management by SLTT entities, significant opportunity exists to formalize the use of mortality and morbidity data as an essential component of the practice of disaster management. The successful operationalization of accessing and using mortality and morbidity data on a large-scale highlights the need for the adoption of an enterprise approach by all relevant stakeholders and support for leadership to initiate change (see Conclusion 3-4). In their review of current practices and barriers, the committee noted the need for improved access to actionable data by SLTT stakeholders to federal data and tools before, during, and after a disaster. Because the capability to analyze and act on these data and access to resources varies across SLTTs, certain entities may require greater support, beyond just data access, from federal agencies than others. Several current and proposed practices have been identified that could be brought to scale to facilitate access to actionable data that could be used at the SLTT level (e.g., the data systems used by Ventura Country). For example, stakeholders, particularly those at the state and local levels, could establish data-sharing agreements during the inter-disaster period to facilitate data access across actors and systems during an emergency. There is often an expectation that localities are responsible for providing data to state and federal authorities without reciprocity. The committee instead encourages the bi-directional flow of data because the fundamental purpose of collecting data is its meaningful use. However, streamlining data access is insufficient without supporting under- resourced local entities in developing the tools and capacities needed to analyze and act on these data. Without prioritizing actionability alongside access, the delivery of large quantities of federal or state data is a distraction at best (see Conclusion 3-7). Additionally, investment in research is needed to develop an understanding of what data are most valuable to various stakeholders at different times and to demonstrate how these data could be used to inform policy and practice throughout the disaster management cycle. For example, certain contextualizing data delivered alongside morbidity data could provide critical information about the characteristics of a specific zip code and lead to enhanced responses through more targeted public health interventions that raw individual counts of morbidity would be unable to provide alone. Research priorities include the initiation of pilot projects with evaluative components, cost-effectiveness research to secure the support of policy makers, and implementation research to evaluate the function of data systems and practices for using individual and population level mortality and morbidity data. The development and piloting of new tools, such as data dashboards and other electronic tools for analysis by lay users, for acting on mortality and morbidity data to inform decision making by local entities is also needed (see Chapter 3). Conclusion 3-7: Access to federal and state mortality and morbidity data is essential but data access does not equate to actionability of these data at the local level. If data are to be actionable, localities require the tools needed to read, PREPUBLICATION COPY: UNCORRECTED PROOFS

5-16 A FRAMEWORK FOR ASSESSING MORTALITY AND MORBIDITY analyze, and display data received from the federal or state level in a meaningful way as well as the expertise and capacity to use these data in decision making. Recommendation 4-3: Facilitate Access to and Use of Actionable Mortality and Morbidity Data by State, Local, Tribal, and Territorial (SLTT) Entities • The Department of Health and Human Services (HHS) should work with the Centers for Disease Control and Prevention, the Federal Emergency Management Agency (FEMA), the Office of the Assistant Secretary for Preparedness and Response (ASPR), and other federal agencies to facilitate access to essential mortality and morbidity data to SLTT entities and academic research institutions throughout the disaster cycle. These data should be provided proactively and in a manner that is actionable for situational awareness and disaster response at a state and local level. • Additionally, state and federal agencies should fund the development and testing of analytical tools and work collaboratively with local entities to use mortality and morbidity data in meaningful ways. • The following immediate actions should be undertaken to ensure SLTT access to and use of mortality and morbidity data: o National Center for Health Statistics (NCHS) should code and automatically provide, with the assistance of FEMA and ASPR, location- specific, baseline mortality data and up-to-date data on disaster deaths following a declared disaster and upon request, as well as offer ready-to- use tools within a set timeframe following disasters to states and localities. o NCHS should make available to researchers and SLTT investigators the mortality data from the National Death Index. o NCHS and state vital records offices should retrospectively geocode death registry entries in select areas that were previously affected by large-scale disasters to provide sample data for modeling future impact and other research. o ASPR and CDC should provide state and local officials with guidance on standard practices for assessing mortality and morbidity and facilitate the analysis of these data by state and local health and emergency management officials. o CDC in collaboration with FEMA and ASPR should fund and conduct research to establish standard practices for analyzing disaster-related causes of death and its contributing causes, including guidance on standard timelines for data analysis (e.g., 30 days) and geographic parameters for defining a disaster’s geographic scope. o CDC and the Centers for Medicare & Medicaid Services (CMS) should use existing systems to pilot the collection of relevant morbidity data following disasters to serve as an inter-disaster baseline. o CMS, in collaboration with electronic health record companies and health systems, should pilot and evaluate the inclusion of disaster-related ICD-10 codes in electronic health records. PREPUBLICATION COPY: UNCORRECTED PROOFS

MEETING THE MISSION 5-17 o HHS should use both existing and novel data sources to improve mortality and morbidity data acquisition and reporting, including the use of surveys, artificial intelligence, machine learning, and other big data methods. Use of Morbidity Data Currently, electronic health records and systems are exceptionally varied, and many lack the capability to push priority data on morbidities to the relevant parties in real time. Therefore, the aggregation and analysis of large volumes of morbidity data to support real-time decision making across these disparate data systems is not yet a reality. As with mortality data, data- sharing challenges and the lack of interoperability of data systems at all levels remain substantial barriers to the use of morbidity data. Opportunities exist to use existing federal systems, such as CMS data systems, to collect valuable morbidity data following emergencies. Testing and then implementing processes for monitoring, evaluation, and assessment of the collection and use of morbidity data would help to identify gaps and best practices in order to guide the evolution of existing electronic systems to be able to capture and report morbidity data. Professional Training and Support Medicolegal professionals, charged with completing death certificates for unnatural or unexplained deaths, are not universally equipped to implement the preceding recommendations. As described above and in Chapter 3, the medicolegal death investigation system within the United States is composed of a patchwork of different systems and professionals at the SLTT level that are responsible for establishing their own policies, practices, and setting standards for the minimum professional requirements for medical examiners, coroners, justices of the peace, and other medical certifiers. Many different stakeholders are involved in the collection and recording of mortality data, and each requires the appropriate training and professional support. Although there is no federal agency responsible for the oversight of these SLTT medicolegal systems, CDC, in collaboration with state vital records offices and professional organizations, is well positioned to serve in this training and support role. The collection and recording of disaster-related mortality data requires the medicolegal workforce to value the need for these data and to have the capacity and capability to adopt standardized definitions, practices, and systems. The committee recognizes that medical examiners are key to the function of the system and, because of their medically oriented education and professional backgrounds, are best suited to perform the essential functions of the medicolegal death investigation system and support the consistent and accurate assessment of individual deaths following disasters. However, the number of individuals in this profession is in decline. Therefore, while outside of the direct scope of the report, it is critical to the integrity of the medicolegal system that the challenges facing the medical examiner profession, in particular burn out and lack of access to basic resources to perform job functions, be addressed. Conclusion 3-2: The collection and recording of disaster-related mortality data requires the medicolegal workforce to value the need for these data and to have the capacity and capability to adopt standardized definitions, practices, and systems. PREPUBLICATION COPY: UNCORRECTED PROOFS

5-18 A FRAMEWORK FOR ASSESSING MORTALITY AND MORBIDITY Recommendation 3-4: Strengthen the Capacity of the Medicolegal Death Investigation System to Assess Disaster-Related Mortality The Centers for Disease Control and Prevention (CDC), in collaboration with state agencies and professional associations, should strengthen the value, capacity, and capability of the medicolegal death investigation system to improve investigation, training, data development and collection, and case management. The following immediate actions should be undertaken: • CDC should fund and re-launch the Medical Examiner and Coroner Information Sharing Program to provide guidance and support to medical examiners, coroners, and other medical certifiers. • The National Association of Medical Examiners, the International Association of Coroners & Medical Examiners, the American Board of Medicolegal Death Investigators, and state-based medical examiner and coroner professional organizations should support the proposed framework for collecting and recording uniform mortality and morbidity data, encourage the use of existing CDC tools and guidance by all professionals, and provide continuing education courses for their members that reflect this guidance. • CDC, through the National Center for Health Statistics, along with appropriate licensing bodies should provide standardized training and materials designed for medical certifiers (physicians, nurse practitioners, physician assistants, and others as applicable by state) who encounter natural deaths and are responsible for entering death information into the death record. • Death investigation systems should develop relationships with state or university- based demographers and epidemiologists to formalize proactive data collection and sharing agreements for natural disasters that are typical for the state as well as mass mortality and morbidity due to disease. • To promote more accurate death certification, the above agencies should incentivize and support the conversion of coroner systems to regionalized medical examiner systems staffed by forensic pathologists and medicolegal death investigators professionally trained to identify and classify disaster-related deaths per the framework described in Recommendation 2-1. Recommendation 3-5: Strengthen the Role of the Medicolegal Death Investigation and State Death Registration Systems in the Disaster Management Enterprise State, local, tribal, and territorial public health and emergency management departments should integrate the professionals and agencies from the medicolegal death investigation and death registration systems in all aspects of preparedness and planning. This should involve the consideration of moving mortality management out of Emergency Support Function #8 (ESF8) and creating a separate ESF dedicated to mortality management. This new function could complement ESF8 and ensure focused attention on assessing mortality during and after disasters, while those charged with ESF8 responsibilities are focused on providing services to survivors. This new function could include the involvement of medical examiners, coroners, and other relevant professionals in planning drills for mortality management; effective, efficient, and unbiased data collection during disasters; trainings for family assistance centers; and standards for after- action reports and other mortality data reporting activities. PREPUBLICATION COPY: UNCORRECTED PROOFS

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In the wake of a large-scale disaster, from the initial devastation through the long tail of recovery, protecting the health and well-being of the affected individuals and communities is paramount. Accurate and timely information about mortality and significant morbidity related to the disaster are the cornerstone of the efforts of the disaster management enterprise to save lives and prevent further health impacts. Conversely, failure to accurately capture mortality and significant morbidity data undercuts the nation's capacity to protect its population. Information about disaster-related mortality and significant morbidity adds value at all phases of the disaster management cycle. As a disaster unfolds, the data are crucial in guiding response and recovery priorities, ensuring a common operating picture and real-time situational awareness across stakeholders, and protecting vulnerable populations and settings at heightened risk.

A Framework for Assessing Mortality and Morbidity After Large-Scale Disasters reviews and describes the current state of the field of disaster-related mortality and significant morbidity assessment. This report examines practices and methods for data collection, recording, sharing, and use across state, local, tribal, and territorial stakeholders; evaluates best practices; and identifies areas for future resource investment.

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