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 disaster’s 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.
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 mean 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 to 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.
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
- Adoption and use of a uniform framework for collecting, recording, and reporting mortality and morbidity data (Recommendations 2-1 and 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).
- 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).
- 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).
- Investment in and development of the capacity to collect and analyze the data necessary for population estimates of mortality and morbidity (Recommendation 4-2)
- Implementation of new tools and approaches to share and use mortality and morbidity data (Recommendation 4-3).
- 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
- Integration of new technologies, as these become available, into existing electronic data systems and tools (Recommendation 3-1).
- Investment in research to advance the science of mortality and morbidity assessment (Recommendations 3-1, 4-1, and 4-2).
- 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).
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 Robert T. Stafford Disaster Relief and Emergency Assistance Act (Stafford Act), with infectious disease-related disasters determined to not be the primary focus
of 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 coronavirus disease 2019 (COVID-19) pandemic. The committee shaped its recommendations around the development of the capabilities needed at SLTT and federal levels 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 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.
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
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).
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.
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 multiple, siloed stakeholders. Leadership at all levels—federal, state, local, tribal, and territorial—will be responsible for championing change.
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 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.
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 is 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, systems, 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 records 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 recording, data system inadequacies for both medical examiner and 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.
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 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 a 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.
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 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 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.
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, 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.
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 and
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 require 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 burnout 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 require the medicolegal workforce to value the need for these data and to have the capacity and capability to adopt standardized definitions, practices, and systems.
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