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Suggested Citation:"Summary." 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:"Summary." 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:"Summary." 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.
×
Page 7
Suggested Citation:"Summary." 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.
×
Page 8
Suggested Citation:"Summary." 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.
×
Page 9
Suggested Citation:"Summary." 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.
×
Page 10
Suggested Citation:"Summary." 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.
×
Page 11
Suggested Citation:"Summary." 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.
×
Page 12
Suggested Citation:"Summary." 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.
×
Page 13
Suggested Citation:"Summary." 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.
×
Page 14
Suggested Citation:"Summary." 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.
×
Page 15
Suggested Citation:"Summary." 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.
×
Page 16
Suggested Citation:"Summary." 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.
×
Page 17
Suggested Citation:"Summary." 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.
×
Page 18
Suggested Citation:"Summary." 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.
×
Page 19
Suggested Citation:"Summary." 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.
×
Page 20
Suggested Citation:"Summary." 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.
×
Page 21
Suggested Citation:"Summary." 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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Page 22

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Summary1 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 critical to supporting situational awareness for the disaster management enterprise and driving public health action to save lives and prevent further health impacts. Conversely, failure to capture mortality and morbidity data accurately and consistently undercuts the nation’s capacity to protect its population. Information about disaster-related mortality and morbidity adds value at all phases of the disaster management cycle. As a disaster unfolds, these 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. Public health messaging shaped by accurate morbidity and mortality data is critical for communicating vital information to the public, protecting them from ongoing and future hazards, and prompting protective actions from policy makers and other leaders. During the interim between disasters, these data provide the foundation for evaluation, prevention, mitigation, and preparedness activities designed to reduce morbidity and mortality when future events arise. In some instances, these data might also inform actions that can even prevent future disasters, such as through prompting actions to mitigate the risk of climate-related disasters. In sum, accurate assessment of mortality and morbidity from disasters is not merely an academic or historical exercise: the timely and accurate counting and attribution of deaths and morbidities can improve disaster response and lead to a more accurate assessment of the extent, types, and causes of morbidity and mortality in disasters, and drive changes in policy, practice, and behavior that will prevent suffering and save lives. Extracting the maximum value from these data depends on having standard practices and systems in place for collecting and reporting accurate information, analyzing it appropriately, and translating the data into action to protect disaster-affected communities. However, it is challenging to coordinate these efforts effectively and uniformly across the disaster management enterprise, which comprises 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 inadequately robust, 1 This Summary does not include references. Citations for the discussion presented in this Summary appear in subsequent chapters. PREPUBLICATION COPY: UNCORRECTED PROOFS S-1

S-2 A FRAMEWORK FOR ASSESSING MORTALITY AND MORBIDITY coordinated, or reliable to leverage mortality and morbidity data to their fullest potential. Instead, these systems and stakeholders are often splintered, siloed, and unable to rapidly share information with each other. As a result, the same incident can generate dramatically different estimates of mortality and morbidity depending on the policies and practices of the home jurisdiction. Data that are not captured uniformly across jurisdictions, federal and SLTT agencies, and professions are less conducive to comparative analysis and may exclude valuable information about deaths and morbidities that are indirectly or partially attributable to a disaster. In other cases, available data about mortality and morbidity are squandered because they are not or cannot be acted on to add value to disaster management or because existing systems are not deriving the optimal value from the data to guide action. Additionally, the consistent and accurate collection of disaster-related mortality and morbidity data is often not prioritized because the stakeholders involved may not be aware of its importance. Multiple approaches exist to assess disaster-related mortality and morbidity. Also, of critical importance, is the reality that stakeholders may have certain vested interests to selectively use data to depict the estimated impacts of a disaster in a certain manner. Whether explicit or inadvertent, this can lead to controversy and confusion. Avoiding these problems requires improving processes for vital statistics, public health, emergency management and emergency response data systems; integrating these data sources with other sources of health data, including indicators of the social determinants of health (especially where morbidity data are concerned); and, perhaps most important, standardizing the way these data collection processes are implemented in SLTT agencies throughout the United States. The entire disaster management enterprise would benefit from changes in practices and policies to strengthen the systems and structures involved in the consistent assessment of mortality and morbidity data during and following large-scale disasters. The increasing frequency and severity of disasters worldwide underscores the need for improvement and standardization of these systems and for stakeholders to be more flexible, coordinated, and adept to meet the core mission of protecting the health and well-being of people impacted by disasters and bolstering community resilience. BACKGROUND AND RECOMMENDATIONS While it is impossible to know definitively the full impact of a large-scale disaster on the people directly and indirectly affected, this report attempts to highlight how the administrative, organizational, logistical, and analytical components associated with each of the major estimation approaches can be improved to produce more accurate and complete reflections of the disaster’s true effect. As such, the committee’s recommendations for improving the function and value of the nation’s systems and practices for assessing mortality and morbidity following large-scale disasters span the organizational, operational, analytical, and professional domains. To structure the process of developing their recommendations, the committee established a set of guiding precepts that synthesize the ethos and key characteristics of their vision for a highly effective system (see Box S-1). PREPUBLICATION COPY: UNCORRECTED PROOFS

SUMMARY S-3 BOX S-1 Guiding System Precepts—Abridged 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. • Incorporate both individual counts and population estimates to better understand a disaster’s true effect. • Leverage morbidity data and mortality data to support response, recovery, mitigation, and preparedness. • Build on and use existing systems, capacities, and methodologies. • Commit to the continuous improvement of systems over time. • Adopt an enterprise approach to activate stakeholders and systems in times of crisis and during the inter-disaster period. • Support the resilience and strengths of historically disadvantaged populations by using data to understand, mitigate, and eliminate inequalities in disaster impacts. Organizational Leadership and an Enterprise Approach Successfully implementing the recommendations set forth in this report will hinge on strong organizational leadership to foster mutual commitment across stakeholders to achieve a coordinated, enterprise-wide approach—aligning the programs and priorities of multiple stakeholders under a shared mission of improving the assessment of mortality and morbidity following large-scale disasters. The full spectrum of systemic changes needed to achieve this improvement across multiple—and often siloed—stakeholders and systems will not be realized unless these agencies, entities, and their leadership rise to meet this collective mission. Leadership at the federal and SLTT levels must buy-in as champions to drive lasting changes across multiple systems and overcome fragmentation. Throughout the disaster management cycle, cross-agency responsibilities will need to be adapted to meet this mission for domestic action. No federal entity or standardized system is singularly responsible for coordination or oversight of the practices for collection, reporting, and dissemination of disaster-related mortality and morbidity data at the national level in the United States. Rather, these responsibilities are primarily the domain of states, territories, and even counties, creating a patchwork of data systems, standards, and processes. Furthermore, the systems and incentive structures currently in place are inadequate to facilitate collaboration among those entities. But in the face of a disaster, these entities must be nimble enough to flex and adapt beyond their day-to-day functions to contribute their unique tools and capacities to a shared enterprise. The leadership of federal agencies is critical in championing for and investing in the necessary systems improvements as well as setting national standards, but federal leadership will not be enough: in view of the underlying structures of public health systems in the United States. SLTT entities will need to PREPUBLICATION COPY: UNCORRECTED PROOFS

S-4 A FRAMEWORK FOR ASSESSING MORTALITY AND MORBIDITY promote the value and facilitate the operationalization of these activities in tandem with federal efforts. Uniform Philosophy for Attribution Across professions and jurisdictions, multiple terms are used to denote a death or injury as related to a disaster and, if so denoted, the degree to which it is related. These different terms are often conflated, which can lead to misunderstandings and mischaracterization of the estimated impact of a disaster. It also undercuts the ability to appropriately compare assessments of disaster-related mortality and morbidity over time and across disasters. As discussed in Chapter 2, there is widespread variation in what is being assessed and the context in which it is being assessed. The current terminology and case definitions used to describe disaster-related mortality and morbidity do not adequately capture the differences in assessment methods used or the totality and temporality of disaster-related deaths and morbidity. The lack of a uniform framework for assessing disaster-related health impacts undermines the quality and usability of these data to inform disaster management, and it leads to confusion about or even misrepresentations of the impacts of disasters. The committee recommends the immediate adoption of consistent framework, which includes approaches for assessment and case definitions, as well as a comprehensive understanding for how these approaches and definitions should be applied to the assessment of mortality and morbidity following large-scale disasters (see Recommendations 2-1 and 2-2). Framework for Assessing Disaster-Related Mortalities and Morbidities To contribute to improving the quality and utility of these data, the committee developed a framework to serve as an initial guide for (1) describing the two primary approaches for developing quantitative indicators of total mortality or morbidity and (2) parsing out individual case definitions that can be used to uniformly characterize the degree to which an individual death or morbidity is attributed to a disaster. First, quantitative indicators of an event’s impact can be generated using two basic approaches: counts of affected individuals or population estimates. One approach is not always better than the other and both produce estimates of a disaster’s impact at a distinct point of time, within a specific context, and based on particular assumptions. Each approach also encompasses a variety of methodologies and tools, each of which has its own unique timelines, challenges, and targets. Estimating total mortality or morbidity by using counts of affected individuals uses data from record keeping systems such as death registration systems or case counts reported to public health agencies. While individual counting methods produce very precise estimates of mortality and morbidity (generally reported to the exact number), the accuracy of this approach is contingent on (1) a complete count of bodies or ill or injured individuals, and (2) accurate attribution of mortality or morbidity to the disaster using consistent case definitions. Because these preconditions are not always met, the committee recommends the adoption of the definitions provided in Box S-2 (see Recommendation 2-1 for the complete recommendation text) as a starting point. The second basic approach to estimating mortality and morbidity is to use statistical methods, such as survey, sampling, or excess mortality methods. These methods typically generate more comprehensive data than the individual counting approach—because they PREPUBLICATION COPY: UNCORRECTED PROOFS

SUMMARY S-5 inherently include both direct and indirect deaths, injuries, or illness—and produce results that are generalizable to the population level. They will typically also include confidence intervals to indicate the exact level of imprecision in the estimations. BOX S-2 Uniform Case Definitions for Attributing Individual Deaths to a Disaster (See Recommendation 2-1) • Direct death: A death directly attributable to the forces of the disaster or a direct consequence of these forces. • Indirect death: A death 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. • Partially attributable death: A death that cannot be definitively tied to the disaster but where the disaster more likely than not has played a contributing role in the death. Approaches for Assessment: Counts and Estimates These two general approaches (individual counts from administrative records and population estimates based on statistical approaches) both provide essential information in the face of a disaster. Each approach has its own strengths, weaknesses, appropriate uses, and methodologies and each approach makes assumptions and is subject to bias. These approaches are similar in that they pertain to a time period and to a geographical area, and estimates from both can be refined over time. Estimates based on individual counts of deaths recorded in administrative systems are valuable for understanding the immediate impact of disasters, but their accuracy depends on the completeness with which individual cases are recorded and reported. The individual counting methods within this approach often fail to capture certain types of disaster-related deaths including individuals who would not have died but for the disaster (e.g., carbon monoxide poisoning from a poorly placed generator or a fatal heart attack during disaster clean up). More about methods and considerations for conducting individual counts can be found in Chapter 3. Comparatively, population-based estimation methods are crucial for capturing a full understanding of the impacts of a disaster on health and mortality. These methods may incorporate less precise information on cause of death, and in some applications (e.g., estimates of “excess” deaths) cannot distinguish which individuals would have survived in the absence of the disaster from those who would have died during the period regardless. A review of methodologies and tools associated with population estimates can be found in Chapter 4. The complex nature of disasters and the multiple pathways through which they affect human health make it difficult to quantify the impact of a specific disaster on human health with precision. Together, however, the two approaches can provide both timely information and a far more comprehensive picture of the health and mortality impacts of a disaster (see Recommendation 2-2). PREPUBLICATION COPY: UNCORRECTED PROOFS

S-6 A FRAMEWORK FOR ASSESSING MORTALITY AND MORBIDITY 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, 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 PREPUBLICATION COPY: UNCORRECTED PROOFS

SUMMARY S-7 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. Sometimes, the availability of different estimates for assessing mortality and morbidity can create confusion, and at worst, the impression that impact of the disaster is being minimized or exaggerated by certain stakeholders via the selective use of data. This was a major public concern following Hurricanes Katrina and Maria, and more recently during the COVID-19 pandemic. When this happens, it is important to realize that the variation in estimates may reflect different, but appropriate, methods and targets. For example: does the count include deaths that are indirectly or partially attributed to the disaster, over what time period, and in what geographic area are death or morbidities being estimated? However, while there are legitimate reasons for analysts to use different approaches and methods for assessing the impact of a disaster, a certain approach or method may be more appropriate than others in specific instances: this report describes the efforts needed to select the most appropriate approaches, methods, and tools according to the context. Differences in estimates of mortality and morbidity often reflect the great variation in the public health and emergency response data systems at the state and local level in the United States. What is required for an individual death to count as being caused by a hurricane, for example, depends on the clarity and specificity of case definitions used within a jurisdiction and on the professional judgements of those making determinations. Whether an individual with respiratory illness is included in the COVID-19 case count depends on whether a test was available and reported. This variability provides an opportunity for intentional or inadvertent selective use of data to minimize or exaggerate the number of cases based on stakeholder interests. This report describes how this problem can be addressed by improving processes for vital statistics, public health, and emergency response data systems and standardizing the way they are implemented and reported in state, local, tribal, and territorial agencies throughout the United States. Operationalize Uniform Systems, Tools, and Practices for Assessing Individual-Level Mortality In addition to widespread inconsistency in the practices and case definitions used to attribute deaths to a disaster, the quality and value of those data are threatened by variability in how deaths are registered and reported across the United States. Mortality data are currently collected and reported through a byzantine process that spans a disjointed network of federal and SLTT-level systems for death investigation and registration. No federal or nationally standardized system exists for death investigations; instead, these are carried out through a patchwork of different medicolegal death investigation systems that are governed at the SLTT PREPUBLICATION COPY: UNCORRECTED PROOFS

S-8 A FRAMEWORK FOR ASSESSING MORTALITY AND MORBIDITY level and thus vary by jurisdiction. For example, states may use a coroner system, medical examiner (ME) system, or a combination of both for certifying deaths—and there are notable differences in levels of training, appointment processes, and political standing for coroners and medical examiners, each of which can impact the quality of death investigations. In some states, these systems are centralized at the state level and in others these systems are decentralized at the county or district level. After a death is certified within the medicolegal death investigation system, it is registered at a state-level vital records office to create a death record. It is then shared with the National Center for Health Statistics (NCHS) via the National Vital Statistics System (NVSS). As described in Chapters 3 and 4, this heterogeneity across systems and lack of uniform standards for attributing mortality and morbidity to a disaster across different systems impedes meaningful analysis and undermines the value of these data in improving disaster management. The committee identified multiple gaps in death investigation and registration systems that limit the accuracy and comparability of the individual-level data collected. For instance, different SLTT systems use incongruent definitions for what counts as a disaster-related death. Medical certifiers of death play a crucial role on the front lines of this process, as they are responsible for assessing whether and the degree to which a death is attributable to the disaster and then inputting that information such that the appropriate information flows up through state- level death registration system and NCHS. Despite their essential role, training for medical certifiers is inconsistent and often inadequate. Due to the variation in the types of medicolegal death investigation systems that exist throughout the United States, the qualifications of these certifiers vary from being a registered voter with a high school diploma and free of a felony conviction in some coroner systems to forensic pathologists with 4–6 years of postgraduate medical training and board certification working in medical examiner systems as autopsy physicians and public health officers (see Chapter 3 for discussion of variation in the medicolegal death investigation system). Additionally, the current medicolegal death investigation and registration systems were not designed to capture information in a way that facilitates interoperability and timely data sharing within and across SLTT and federal levels. This adds to the administrative burden on medical examiners and coroners (ME/Cs) who are often required to enter data on a death into multiple systems. Electronic registration and coding of causes and contributors of death can streamline the process of death registration, but not all ME/C jurisdictions have electronic case management systems nor do all states have fully electronic death registration systems (see Recommendations 3-1 and 3-2). The committee also identified opportunities to address these gaps through a series of immediate and future priorities for investment to promote the adoption of standard and uniform practices for collecting, recording and reporting these data. For example, all jurisdictions would benefit from collecting a set of standard baseline data points about a death (e.g., geocoding of place of death and place of residence; description of contributing factors of death practices). The NVSS is well positioned to drive many of the necessary systemic changes to improve vertical coordination across stakeholders and the interoperability of electronic systems between themselves, medical certifiers, and state vital records offices. Additional federal-level requirements could help ensure that these baseline data are collected uniformly and accurately by medical certifiers, so the information can be coded and entered into the national database.2 This 2 This does not warrant changes to death certificates, which are legal documents governed at the state level. PREPUBLICATION COPY: UNCORRECTED PROOFS

SUMMARY S-9 will also require supporting those states without electronic death registration systems to put them in place. 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 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. PREPUBLICATION COPY: UNCORRECTED PROOFS

S-10 A FRAMEWORK FOR ASSESSING MORTALITY AND MORBIDITY 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 Defining and Collecting Morbidity Data Morbidity is a complex concept that covers a range of health outcomes from the physical to psychological, including cardiovascular, gastrointestinal, and respiratory diseases; physical injuries; and mental health outcomes. Collecting data about disaster-related morbidities presents its own set of challenges beyond those described for mortality data, given the broad definition of disaster-related morbidities, variation across disaster types, and logistical challenges associated with mining morbidity data from across broad network of unique federal, SLTT, and health care systems. Capturing disaster-related morbidity data is further complicated by several inextricably linked factors: For example, disasters can exacerbate pre-existing conditions and create additional health complications (e.g., the closing of dialysis centers in a disaster will create morbidity among people with kidney disease requiring dialysis); co-morbidities can predispose certain at-risk individuals to additional diseases in the post-disaster environment (e.g., individuals with diabetes are at additional risk for cardiac disease); and multiple social determinants of health (SDOH) can profoundly impact both mortality and morbidity in disasters. The appendixes to this report provide several case examples that explore these complications. Appendix D describes the impact of SDOHs on disaster-related morbidity and mortality through two case examples. Appendix C provides a focused case study of the challenges in assessing mortality and morbidity during the early stages of the COVID-19 public health emergency. Both provide additional support for the report’s core recommendations.3 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 actions, including community health education, and medical preparedness (see Chapter 2 for additional uses of morbidity data). 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 recovery, mitigation, and preparedness activities; enhancing real-time response; and providing information on health care utilization. Therefore, exclusive focus on mortality data, the traditional outcome of interest, at the expense of morbidity data is tantamount to focusing only on the most severe cases. 3 The Federal Emergency Management Agency, the study’s sponsor, provided permission for the inclusion of COVID-19 considerations in the report. PREPUBLICATION COPY: UNCORRECTED PROOFS

SUMMARY S-11 Currently, there is no consensus on which morbidities or indicators should be consistently tracked in common types of disasters (e.g., floods, hurricanes, blizzards, tornadoes, pandemics/epidemics) to provide actionable information to end users such as public health and emergency planners, health care systems, and SLTT and federal agencies. As with all data, different types provide different opportunities for use. The collection of significant morbidity data, defined for the purposes of this report as serious morbidities with high risk of immediate hospitalization and death, could provide critical data on population needs regarding access to health care resources. However, exclusively focusing on significant morbidities would likely fail to capture population trends for less immediately critical but far more prevalent and costly morbidities related to the social determinants of health, such as respiratory impacts, mental health outcomes, and exacerbation of existing comorbidities (see Appendix D). Defining what data to prioritize for collection 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 (see Recommendation 3-3). 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. Analytical Methods for Population Estimates As indicated in the guiding precepts (see Box S-1), in assessing the impacts of disasters, the committee recognizes the importance of both counting individuals who die and estimating the morbidity and mortality impacts of disasters on the entire population at risk using statistical methods. Accurate counts of individual deaths can provide timely information on the scale of an event and is critical for assigning individual-level benefits, but individual counts rarely provide an adequate picture of a disaster’s impact on the mortality and morbidity of the population as a whole. For a number of reasons (described in detail in Chapter 3 and explored in regard to the COVID-19 case study in Appendix C), individual counting methods typically underestimate the total impact of a disaster on a population. Statistical estimation methods, by contrast, generate a PREPUBLICATION COPY: UNCORRECTED PROOFS

S-12 A FRAMEWORK FOR ASSESSING MORTALITY AND MORBIDITY more complete picture of the total impact of the disaster, but do not always yield an allocation of individual cases into mutually exclusive categories of death or illness resulting from the disaster versus from other causes. Survey and sampling methods and excess death methods are the primary methods encompassed by the population estimation approach. See Chapter 2 for a discussion of both individual count and population estimate approaches as they relate to the value and use of mortality and morbidity data and Chapter 4 for a discussion of population-level methods of estimation. 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 total deaths and significant morbidities were caused by this disaster?” However, while there is no single standard method for generating mortality or morbidity estimates using population estimation, methodological best practices can be specified. A national research program is vital to further develop and validate these best practices and to indicate appropriate circumstances for the use of specific methods (see Recommendation 4-1). As in all areas of research, these practices should be characterized by clarity in the specification of study objectives and definition of terms, transparency in the statement of assumptions and the sourcing of data used in the study, and great caution in advancing any particular measure or method as a most 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 analytical sophistication and high-quality fieldwork necessary to develop and implement data infrastructure nationally is generally beyond the capabilities and time availability of most SLTT health departments, the responsibility of building and sustaining the capacity of the nation’s existing research and survey infrastructure to support the collection of survey data on the health effects of disasters rests at the federal level (see Recommendations 4-1 and 4-2). 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 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. PREPUBLICATION COPY: UNCORRECTED PROOFS

SUMMARY S-13 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 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 To maximize value, data on disaster-related mortality and morbidity should be available to all stakeholders and be provided in a manner that is actionable for informing response, recovery, and mitigation activities at all stages of the disaster management cycle. Ensuring equitable access to timely and actionable data is of particular importance in disaster-impacted PREPUBLICATION COPY: UNCORRECTED PROOFS

S-14 A FRAMEWORK FOR ASSESSING MORTALITY AND MORBIDITY localities that may have limited capacity to carry out their own data collection and analysis. Strategies to broaden access and improve the utility of these data are described in Chapters 3 and 4. For example, federal agencies (e.g., NCHS, FEMA, Office of the Assistant Secretary for Preparedness and Response, CDC) have the responsibility to actively support partners at the SLTT levels by providing them with actionable, location-specific information from the federal database, including baseline comparison mortality data and up-to-date data on disaster deaths (see Recommendation 4-3). Access to data does not equate to the actionability of data. For data to be actionable, the stakeholder requires the tools, capacity, and expertise to analyze these data and act appropriately. Therefore, investment in the development and deployment of ready-to-use tools that are tailored for use by SLTT stakeholders is critical to ensuring action (see Recommendation 4-3). Leveraging federal data and expertise to address limitations of federal mortality and morbidity data, such as routine mortality and morbidity surveillance, continuous quality improvement of data collection and integration systems, and retrospective geocoding of death registry entries in certain disaster-impacted areas would also enhance the accuracy and actionability of these data (see Recommendation 4-3). 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 PREPUBLICATION COPY: UNCORRECTED PROOFS

SUMMARY S-15 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. 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. Professional Training and Support A broad range of stakeholders across professions and jurisdictions is involved in capturing, recording, analyzing, and using disaster-related mortality and morbidity data. Major barriers identified by the committee include the ongoing siloing of death investigation and registration systems from the disaster management enterprise, disparate levels of professional training and expertise across medical certifiers, and poor continuing education regarding attribution and recording of disaster-related deaths. Cumulatively, these shortcomings hinder the ability of the nation to procure accurate and complete individual counts of reported deaths following a disaster. Supporting medical certifiers will require federal resources for ongoing guidance, education, and training to enable their accurate input of data into death records and to appreciate the importance of their part in the enterprise. Additionally, structural changes in medicolegal death investigation systems may be warranted (e.g., transition to systems staffed with MEs and promulgation of standardized education and continuing training requirements) to ensure that this critically important system is staffed by professionals with medically oriented training and professional backgrounds. This will ensure that these professionals are equipped to perform essential system functions and support the consistent and unbiased assessment of individual deaths following disasters. Federal agencies and medical examiner/coroner professional organizations are essential to engaging and supporting this workforce and making the essential changes (see Recommendations 3-4 and 3-5). 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, PREPUBLICATION COPY: UNCORRECTED PROOFS

S-16 A FRAMEWORK FOR ASSESSING MORTALITY AND MORBIDITY 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

SUMMARY S-17 MEETING THE MISSION 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 as well as potential best practices that could be brought to scale. Chapter 5 offers a set of crosscutting recommendations intended to serve as a blueprint for moving forward. Box S-3 provides a high-level synthesis of these recommendations stratified into immediate actions and future priorities. PREPUBLICATION COPY: UNCORRECTED PROOFS

S-18 A FRAMEWORK FOR ASSESSING MORTALITY AND MORBIDITY BOX S-3 Recommended Immediate Actions and Future Priorities 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 a state, local, tribal, and territorial (SLTT) level (Recommendations 3-1 and 3-2). 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 (see 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 (Recommendations 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). 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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