Comprehensive data collection, along with timely reporting and dissemination, are required to inform decision makers, empower stakeholders, and support improvements in cardiac arrest survival rates and outcomes (IOM, 2015). In the 2015 Institute of Medicine (IOM) report Strategies to Improve Cardiac Arrest Survival: A Time to Act the committee stated that “given the large health burden of cardiac arrest, a national responsibility exists to facilitate dialogue about cardiac arrest that is informed by comprehensive data collection and timely reporting and dissemination of information” (IOM, 2015, p. 8), as described in Recommendation 1 (see Box 2-1).
The Centers for Disease Control and Prevention Perspective
Robert K. Merritt, Centers for Disease Control and Prevention
The Centers for Disease Control and Prevention (CDC) joined the cardiac arrest surveillance efforts in 2004 when it sponsored the Cardiac Arrest Registry to Enhance Survival (CARES), began Robert Merritt. CARES was designed as a Web-based registry platform that captures data from 911 dispatch systems, emergency medical services (EMS) systems, and hospitals that work together to treat out-of-hospital cardiac arrest (OHCA) (CARES, 2016). When CARES was launched, it was part of a
broader, national cardiovascular surveillance initiative being undertaken by CDC, said Merritt. Its mission is “to help communities determine standard outcome measures for out-of-hospital cardiac arrest (OHCA) allowing for quality improvement efforts and benchmarking capability to improve care and increase survival” (CARES, n.d.). Merritt indicated
that this mission was nested within CDC’s overarching principles for surveillance, which focus on the collection, analysis, interpretation, and dissemination of data to advance CDC’s programmatic and policy goals. However, in 2012, funding for CARES shifted from CDC to a group of private funders, including the American Heart Association, the American Red Cross, Medtronic Foundation Heart Rescue Project, and ZOLL Medical Corporation (CARES, 2016). As of the date of this workshop, CARES is a subscription-based registry that covers more than 90 million people in the United States and includes 17 state-based registries and 50 communities in 22 states (CARES, 2016).
The resuscitation activities that are currently supported by CDC are typically managed in conjunction with state and local grantees. The funding is directed toward improving surveillance efforts overall; increasing public awareness, with an emphasis on the use of cardiopulmonary resuscitation (CPR) and automated external defibrillators (AEDs); and promoting public access to defibrillation, explained Merritt. Under the umbrella of surveillance, CDC maintains two publicly available surveillance portals—Data Trends & Maps and the Interactive Atlas of Heart Disease and Stroke—that assemble and display data from various surveillance systems and data sources (CDC, 2016a,b). Merritt noted that, moving forward, the CDC surveillance initiatives will promote accelerating and enhancing the standardization of data and data exchange systems, the use of electronic health record (EHR) systems, and the implementation of electronic lab reporting and mortality surveillance systems.
Barriers and Goals for the Future
In considering the implementation of the first recommendation from the IOM’s report, Merritt highlighted two main challenges for CDC. First, there are limited resources available for chronic diseases (e.g., cardiovascular diseases) overall, with greater support usually available for prevention and health promotion activities (e.g., smoking cessation and blood pressure control). Second, emerging or politically supported priorities (e.g., Ebola and Zika) often take precedence over specific areas of surveillance, such as cardiac arrest or stroke.
More broadly, Merritt described barriers that will face the resuscitation field as it attempts to establish a comprehensive national cardiac arrest surveillance system. For example, reaching consensus on goals that are both reasonable and achievable, while also agreeing on standardized performance measures, will be difficult. Merritt stated that, from a data collection standpoint, barriers are likely to arise when ensuring the following:
- data are collected in an accessible, efficient, and timely manner;
- data systems and registries are compatible and interoperable;
- data linkages across platforms are possible; and
- data can be coordinated across levels (e.g., state, county, city/town).
Merritt also noted that accounting for the underrepresentation of special populations and overcoming disparities will pose additional challenges. A priority from the CDC perspective, and also a potential challenge, is developing a publicly available portal that can organize data visually (e.g., maps) and at various levels (e.g., state, county, city/town).
In considering how to merge databases, Merritt urged the resuscitation field to agree on how much data and which measures are actually needed and what the core dataset will include. He stressed the importance of having an accurate numerator and denominator for cardiac arrest and being able to analyze that information across demographic groups. In terms of funding surveillance, Merritt reiterated that Congress and other government leaders are unlikely to support a new data system. However, developing a reportable framework through state and territorial epidemiologists—similar to the model used in the cancer community—could create a catalyst and engage the broader public health community. Merritt described how, in the cancer community, multiple registries came together through data harmonization efforts and now serve as a better source of data. In order to advance national cardiac arrest surveillance efforts, Merritt said the resuscitation field will need to establish strong public− private partnerships and develop a strategy to leverage and expand existing surveillance efforts.
In a hypothetical scenario in which Merritt received $10 million in unrestricted funds to advance comprehensive cardiac arrest surveillance, he suggested dedicating resources to a few priority areas. His top priorities would be to establish an inclusive public−private partnership and to fund a dedicated data manager/coordinator for each state who focused solely on cardiac arrest surveillance. Next, he would allocate resources for developing a core set of standardized performance and outcomes measures, and then he would define shared technical specifications for data storage and transmission. Merritt would also ensure that the data collected were freely available and used as decision-making and accountability tools at the national, state, and local levels. Rather than starting from scratch in these efforts, Merritt urged stakeholders to build on and leverage existing public and private data systems whenever possible. In closing, Merritt emphasized that if the resuscitation field pursues making cardiac arrest a reportable event, stakeholders must unite and agree on
next steps. The field will need to determine whether to go through the Council of State and Territorial Epidemiologists, a state epidemiology mechanism, or state legislatures. Regardless of the approach used, this goal would need to be carried out in a meaningful and coordinated way, Merritt concluded.
The National Highway Traffic Safety Administration Perspective
Noah Smith, National Highway Traffic Safety Administration
The goal of the National Emergency Medical Services Information System (NEMSIS) is to “improve care through the standardization, aggregation, and usage of point-of-care EMS data at local, state, and national levels,” said Noah Smith. This multifaceted information system incorporates a documentation standard that is applied by all emergency medical technicians (EMTs) and paramedics when collecting data on patients across the country. The data captured by local EMS systems move from local repositories to state databases and then to the National EMS Database, which is fully available online and is managed by the National Highway Traffic Safety Administration (NHTSA) (NEMSIS Technical Assistance Center, 2016b). Since its inception more than 2 decades ago, NEMSIS has evolved and is currently undergoing a transition to version 3 in 2016. The version 3 standard will place more emphasis on data usage for increased public research rather than on simply collecting the data, explained Smith. The new version will encompass a larger number of data elements and will allow almost real-time data submission from ambulances responding to calls directly to the National EMS Database. Smith also pointed out that the new NEMSIS standard is Health Level-7 compliant, thus ensuring standardized data collection and enabling interoperability across other types of health care data.
The 2015 dataset from version 2 of NEMSIS covered approximately 80 percent of all 911 ground-based EMS activations in the United States, Smith said, representing more than 30 million records from nearly 10,000 EMS systems across 49 states and territories (Smith, 2016).1 Due to the implementation process occurring predominantly within the next 2 years, Smith stated that the 2015 dataset from version 3 of NEMSIS includes several hundred thousand records from four EMS agencies across eight states. As version 3 is rolled out on a larger scale, EMS systems will collect information for dozens of data elements relevant to cardiac care,
1 Numbers updated through personal communication, N. Smith, NHTSA, October 24, 2016.
including 19 specific data elements recorded only in the event of a cardiac arrest, said Smith (NEMSIS Technical Assistance Center, 2016a). These elements were developed in collaboration with CARES and several other stakeholders to ensure that data captured meet the needs of the resuscitation field without duplicating efforts, though they do not match exactly. These data elements will include, for example, information on etiology of the arrest, resuscitation attempts, use of CPR and AEDs, return to spontaneous circulation, and outcomes, explained Smith. The majority of the elements (13 elements) will be available at the national level, while a small portion will be available only at the state level (3 elements) or will be optional (3 elements).
Barriers and Goals for the Future
As confirmed by Smith, many of the barriers facing the resuscitation field with regard to improving surveillance are not unique to cardiac arrest or to registries, NEMSIS, EMS, or hospital care in general. The first barrier is a perceived, or actual, lack of return on investment (ROI) for data users and providers when it comes to health information technology (HIT) investments. For example, EMTs and paramedics are not always involved in planning phases when data initiatives are launched or evolve. Therefore, these key players are “left wondering whether the extra time and extra effort are actually worth it,” said Smith. At the local level, if the connections between data entry and care improvement are not made clear, these efforts are likely to fail. This challenge of perspectives may also contribute to underuse, a problem that NEMSIS has had to regularly overcome.
The second barrier, according to Smith, is that registries are not always discussed within the context of other HIT initiatives and innovations. Rethinking data collection in light of new initiatives could foster creative approaches to extract cardiac arrest data from health information exchanges and other trusted HIT infrastructures across the spectrum of care—prehospital/EMS, in-hospital, and post-discharge care. These new approaches could supersede the need for establishing another registry. Smith noted that the resuscitation field is not the only field currently weighing options to merge existing surveillance efforts. The trauma field is also considering how to create a unified registry focused on trauma care. Smith said, there are many pros and few cons to combining these efforts and resources. He offered NEMSIS as a prehospital dataset that could serve as a valuable data source for cardiac arrest surveillance efforts. Smith challenged the resuscitation field, as a whole, to devise and agree
on meaningful, incremental goals that everyone can work toward, even down to the local level across individual providers. Although there are overarching goals within the resuscitation field to improve care, enhance outcomes, and save lives, those goals may not be tangible enough to encourage action at the community level, said Smith.
Smith was also asked to consider the hypothetical scenario in which he received $10 million in unrestricted funds to advance comprehensive cardiac arrest surveillance. He suggested first conducting a pilot test of a state-level sudden cardiac arrest registry under the most progressive, well-established state health information exchange. The registry should comprise data compiled exclusively from that exchange, thus serving as a proof of concept that would demonstrate ROI for all users, including patients. The data could be used to develop and benchmark standardized performance measures across the spectrum of care through the NHTSA-funded EMS Compass process. Smith also suggested that EMS and hospital software packages be certified together based on a set of standards related to collecting, exchanging, and submitting standard data elements on cardiac arrest. He noted that these efforts should be tied to meaningful use. Furthermore, if the resuscitation field is looking to achieve a comprehensive census of cardiac arrest, Smith suggested looking to other successful censuses in the United States, including NHTSA’s Fatality Analysis Reporting System. This program pays an analyst in every state for the sole purpose of populating data into the reporting system. Smith warned against creating an added burden on health care providers in the form of data collection requirements or a cumbersome system.
Smith reiterated the value of using existing data linkage programs, such as CARES, as trusted data sources for possible expansion. “If we continue to think about registries as individual relationships between hospitals and some database in the sky, they are not going to be successful in the future,” he said. Another workshop participant supported the expansion of CARES, but encouraged a more unified approach to engaging EMS systems and hospitals, rather than “the sort of guerrilla tactics [currently being used]—going EMS agency to EMS agency, hospital to hospital.” The participant said that EHR vendors at both the EMS and hospital levels could be involved in developing a meaningful use approach to expanding coverage from 27 percent to 100 percent of the population. In closing, Smith encouraged the resuscitation field to collaborate with others and build on the previous successes, such as the standards that already exist within EMS, rather than starting from scratch.
Results of the National Heart, Lung, and Blood Institute’s Sudden Cardiac Death Prevention Working Group
Christine Albert, Brigham and Women’s Hospital
Each year in the United States, approximately 250,000 individuals suffer a sudden cardiac death, began Christine Albert.2 Although sudden cardiac death is a relatively rare event with a rate of 60 to 90 per 100,000 person-years, stated Albert, it has a major impact on families and society overall (Albert, 2016; NHLBI, 2016). In the past few decades, reductions in sudden cardiac death incidence have not matched reductions in deaths associated with other types of coronary heart diseases. Albert indicated that there are a number of complicating factors that impede progress and emphasized the need for advances in prevention. For example, most of the sudden cardiac deaths occur within low-risk populations—individuals with no history of cardiac disease (55 percent of men and 64 percent of women)—making it difficult to define target populations for prevention. Additionally, a majority of cardiac arrests are not witnessed (50 percent) and/or occur in homes (70 percent), posing sizable barriers to immediate and effective treatment, asserted Albert, further emphasizing the importance of prevention (Albert, 2016).
Due to the complexity and persistence of sudden cardiac death, the National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health (NIH) assembled an expert working group focused on prevention in May 2016. Albert noted that the group was tasked with identifying research barriers, considering innovative solutions, developing recommendations to advance research efforts, and establishing short- and long-term goals for preventing sudden cardiac death in the general population. The working group divided its deliberations across four subgroups and areas of focus, which resulted in the development of the following five recommendations:
- NHLBI Working Group Recommendation 1: Sudden cardiac death should be classified as a reportable condition—a recommendation, noted Albert, that is similar to recommendations coming from the resuscitation field for cardiac arrest. This recom-
2 As defined in Chapter 1, sudden cardiac arrest is “a severe malfunction or cessation of the electrical and mechanical activity of the heart . . . [which] results in almost instantaneous loss of consciousness and collapse” (IOM, 2015, p. 1). Sudden cardiac death is “defined as death due to a cardiac etiology or cardiac involvement in a noncardiac disorder, in a person with or without a known pre-existing disease, and in whom the time and mode of death are unexpected” (IOM, 2015, p. 27, citing Myerburg and Castellanos, 2015).
mendation also calls for a standard lexicon, reporting procedures, death certificate elements, and postmortem examinations.
- NHLBI Working Group Recommendation 2: Use existing and new datasets (e.g., NHLBI datasets, the Patient-Centered Clinical Research Network, the Precision Medicine Initiative, cardiac arrest registries) to identify and confirm cases and subtypes of sudden cardiac death. This would require data elements that capture information on possible risk factors that preceded the death (e.g., age, health status, comorbid conditions), noted Albert.
- NHLBI Working Group Recommendation 3: Engage in collaborative analysis to compile and analyze sizeable datasets that allow for the exploration of subphenotypes, while minimizing heterogeneity, and target preventive approaches.
- NHLBI Working Group Recommendation 4: Establish a sudden cardiac death registry for adults, paralleling the Sudden Death in the Young Case Registry, which could incorporate data from autopsies or EMS and hospital records.
- NHLBI Working Group Recommendation 5: Facilitate the development and validation of scalable sensors/monitoring devices that can be used to identify risk factors and triggers of sudden cardiac death and sudden cardiac arrest.
Albert observed that having multiple databases often leads to inefficiencies because the data may be collected in different ways based on different definitions, which then leads to different answers to the same research questions. Registries focus on the variables connected with the arrest, said Albert, whereas epidemiologists want to know more about the factors preceding the event. This disconnect hinders opportunities for collaboration and melding data.
Next, Albert noted that both cardiac arrest and sudden cardiac death have a range of diverse characteristics. She again called for making sudden cardiac death a reportable condition and described the factors that would be required to achieve that goal. Albert said that a set of rudimentary details about what happened before the person died (e.g., how long did symptoms last, medical history) would need to be collected in a standardized way to facilitate collaborative study. She emphasized the importance of common definitions for cardiac arrest and sudden death, which would need to be consistently applied across death reporting and death certificates—admittedly a huge undertaking. A more cost-effective approach to improving surveillance of sudden cardiac death, Albert suggested, would be to incorporate sudden cardiac death into future large-scale cohort studies.
To merge databases effectively, leadership and collaboration will be
needed. Albert said the accuracy of the data captured in the database needs to be a priority. She suggested that CARES could be expanded, but that the covered population would also need to be expanded, as well as the areas in which data are collected. For example, the registry would also need to collect data on sudden death and the circumstance of the arrest, said Albert.
The Paul Coverdell National Acute Stroke Registry: How to Overcome Shared Pitfalls
Michael Frankel, Emory University
Sometimes it is easy to lose sight of the fact that cardiac arrest is as much about the brain as it is the heart, Michael Frankel observed. Cardiac and neurologic outcomes are equally important and cannot be viewed as being mutually exclusive. Frankel urged leaders, researchers, and other stakeholders to better integrate these two organ systems and outcomes when discussing data collection strategies. Like stroke, cardiac arrest must also be viewed from the public health perspective. In Georgia, for example, the stroke community applies an interconnected model for improving public health (see Figure 2-1). Disease surveillance and basic science discoveries serve as a basis for decisions at the public health level. The work of NIH’s StrokeNet—a collaborative of 25
regional stroke centers that enhance recruitment for clinical trials—combined with evidence from the clinical trials are used to inform consensus opinions. In turn, the consensus opinion statements released by professional organizations stimulate quality and education initiatives at the local and hospital levels, such as those that operate under the Coverdell Stroke Registry, the Georgia Stroke Professionals Alliances, and the Joint Commission.
As described in previous IOM work, there is “a gap between what we know and what we do,” said Frankel, and this is the gap that the Coverdell Stroke Registry is trying to bridge. Despite its name, the Coverdell Stroke Registry is not a disease surveillance registry; it is a surveillance tool dedicated to quality improvement. CDC launched the registry in 2001 with funding allocated by Congress in honor of Senator Paul Coverdell (R-GA), who died following a stroke in 2000. The overarching goal of the state-based registry, continued Frankel, is to collect data on stroke care in order to promote the implementation of the highest quality care and reduce mortality. The registry began as a pilot study run by Emory University, but today includes hospitals in nine states.
Challenges and Opportunities
The Coverdell Stroke Registry collects data on a set of evidence-based quality indicators in areas that include the timeliness of treatment, use of prophylactic treatments during hospitalization, screening for other risk factors, stroke education, assessment for rehabilitation, and discharge treatment plans. Future efforts will focus on data collection beyond hospitalization and into the recovery phases by linking datasets. One of the biggest challenges, said Frankel, is capturing data on long-term neurologic outcomes. Fragmentation and silos across the continuum of care from before to after hospitalization pose major barriers, and hospitals will need to be more engaged in post-hospital data collection. However, dwindling resources and a lack of leadership within hospitals continue to present sizable difficulties that the Coverdell Stroke Registry must overcome. A number of data-related obstacles have also presented challenges, said Frankel. For example, lack of rigor and validation, along with missing data, undermine improvement efforts. Data-sharing limitations associated with the Health Insurance Portability and Accountability Act also pose additional regulatory barriers, noted Frankel.
In part, the successes of the Coverdell Stroke Registry in Georgia can be credited to the collaborative efforts among the American Heart Association, the American Stroke Association, the Joint Commission, and participating hospitals, said Frankel. If existing registries (e.g., CARES, Get With the Guidelines) are to be leveraged in building a cardiac arrest
surveillance system, strong partnerships will need to establish standardized quality and outcome metrics and merge existing data infrastructures. In closing, Frankel suggested that the CDC model of funding for the stroke registry could be used to select a sample of representative states to participate in a registry designed for both surveillance and quality improvement efforts.
Cognitive Computing as a Cardiac Arrest Surveillance Strategy
Laura Langmade, IBM Watson Health
Watson Health is a cognitive computing system that is capable of understanding, reasoning, and learning, according to Laura Langmade. For health care, structured data include easily quantifiable data points that can be found in EHRs, such as vital signs and lab results, whereas unstructured data refers to blocks of text found in published literature, social media, and images. In practical terms, this means that Watson could read and understand the more than 7,000 articles generated from a PubMed literature search for cardiac arrest risk factors faster and more efficiently than the average person. This is new and exciting territory, asserted Langmade, given the large body of literature that is produced every day. Watson is also able to analyze available data and offer evidence-based care options for providers’ considerations, thus demonstrating its ability to reason. Cognitive computing systems, such as Watson, are also dynamic and able to learn over time based on inputs—a type of collaboration between technology and humans, remarked Langmade.
Cognitive systems excel at a number of tasks that are incredibly useful in the practice of medicine—pattern identification, natural language processing, locating information and knowledge, and eliminating bias. Through computing, all of this can be accomplished at high rates of speed and with endless capacity, indicated Langmade. Watson could also be used by researchers to glean insights from numerous data sources (Chen et al., 2016). Data become powerful when useful insights, or actionable knowledge from data, can be found. Insights in the future could help guide decisions about data elements and quality metrics that need to be collected moving forward. Although Watson is capable of many things that could reshape medicine, Langmade pointed out that several traits are uniquely human and cannot be substituted by technology—having and applying common sense, morals, ethics, compassion, and imagination; managing abstraction; and making generalizations.
As part of Watson Health’s efforts, Langmade also noted that IBM acquired a data management platform called Explorys, which can be deeply integrated into EHR systems and allows various levels of analytics and reporting, population assessments, and application of risk models. Among other things, Explorys uses big data across health care settings to help providers improve the delivery of health care (IBM, 2016). Additionally, to support Vice President Joe Biden’s Cancer Moonshot Initiative, IBM Watson Health has established a public−private partnership with the Department of Veterans Affairs, which provides Watson for Genomics to the organization in an effort to help expand their precision medicine efforts to combat cancer.
Barriers and Lessons Learned
When considering how elements from cognitive computing and technological advances could be applied to the development of a cardiac arrest registry, Langmade encouraged developers to think about how the data are generated and collected, how those data will be mapped and moved across systems, how the data can be scrubbed of technically implausible information, and how to accomplish ongoing monitoring and validation of the data. Langmade identified three main barriers that will need to be overcome in order to design a national registry: the diversity of data sources, the volume of data, and the variety of data.
Data exist all along the chain of survival—from collapse and initial resuscitation efforts to the 911 call and EMS arrival and through hospital and postdischarge care. This diversity of data may result in silos of information that need to be bridged and integrated. However, Langmade described this as not only a barrier but also an opportunity to gain new insights from connections that are made across various datasets. The sheer volume of data generated across all cardiac arrests nationwide is going to be a challenge, noted Langmade. The strengths and weaknesses of the existing datasets should be evaluated before making a decision about how to merge the databases. The variety of data—both structured and unstructured—will need to be managed. Overcoming these barriers could be possible through technological advances, such as cognitive computing systems, and through public−private partnerships. Langmade also emphasized the importance of collaborating with the public and viewing the public as a key stakeholder along the way, suggesting that merging databases could lead to new insights that are not possible with the current fragmentation.
Lance Becker and Dianne Atkins, Planning Committee Members3
Lance Becker and Dianne Atkins led the two breakout sessions focused on envisioning national surveillance and strategies for advancing the IOM’s recommendation on surveillance. In considering possible barriers for implementation, Becker noted that large quantities of data feed into numerous registries. However, the data are not always shared, and there is not a standardized dataset that is collected nationally for cardiac arrest. A cardiac arrest survivor pointed out that, although crime statistics—including murder rates—are readily available and reported throughout every community in the United States, cardiac arrest statistics are difficult to obtain. Some breakout session members highlighted the need to be able to track 100 percent of the population in order to document every cardiac arrest, regardless of location of arrest, treatment administered, and whether or not EMS was called. Atkins reported that interoperability challenges across EMS and hospital records will need to be solved in order to comprehensively collect data from prehospital through post-hospital care and outcomes.
Both groups considered different options to enhance a cardiac arrest surveillance system. There is no definition of an optimal registry, stated Becker. Atkins’s breakout session considered the benefits of building a new national dataset. Some breakout session members suggested that a new dataset, populated by mandatory reporting and transparent processes, could lead to a cost savings in the long run. Developing a national surveillance system could be a resource-intensive process, reported Becker. Atkins noted that much of the necessary work has already been done; thus building a database from scratch could be a waste of valuable resources.
Some members of Becker’s breakout group encouraged an efficient, scalable state-based registry model. A few participants presented CARES as an existing, rigorous, affordable tool that has had documented, positive impacts on processes and outcomes. CARES uses a secure platform and produces high-quality data and results. However, there are some downsides to building on existing initiatives, noted Atkins. A few breakout session members echoed Albert’s concerns about data fragmentation
3 Breakout session presenters were asked to summarize the major ideas and opinions proposed by individual participants during their respective breakout sessions. Individual statements described below are not necessarily the position of the presenter and should not be interpreted as consensus statements from the breakout group as a whole or of the National Academies of Sciences, Engineering, and Medicine.
and accuracy. Some individuals also noted that funding and levels of collaboration are variable, and more importantly, the existing registries are all voluntary. Some breakout group members suggested that advancing surveillance would be easier if cardiac arrest was established as a mandatory reportable condition.
Both Becker and Atkins highlighted the need for accountability and sustainability, noting that funding and sustainability are always inextricably linked. Several participants in Atkins’s group suggested applying the Centers for Medicare & Medicaid Services model in which providers are not paid unless they participate in measurement and process requirements. Members of Atkins’s breakout group also encouraged a built-in feedback feature that would allow EMS, hospitals, and communities to track their progress. Becker and Atkins noted that data entry and reporting must not be onerous, and any efforts to expand surveillance would need to be cost-effective. Atkins underscored the importance of defining a minimum dataset with optional elements that could be added, depend-
ing on available time and resources regardless of format, and emphasized how data linkages and automated data entry could be used to minimize time requirements. Becker emphasized that all communities need to be given an opportunity to improve their chains of survival and outcomes—building on lessons learned from better cardiac arrest surveillance.
Both breakout sessions were asked to brainstorm lists of potential partners to engage in building a national cardiac arrest surveillance system. Atkins pointed out that the existing datasets and registries have already demonstrated value in terms of building partnerships and documenting changes in disease patterns. Box 2-2 includes examples of the types of stakeholders that could be approached. Becker and some members of his breakout group suggested that emphasis be placed on government agencies with a degree of accountability and nongovernmental organizations with missions directly related to cardiac arrest.
Albert, C. 2016. NHLBI Sudden cardiac death prevention working group: Focus on prevention in the general population. Presentation at the Dissemination Workshop on the Report Strategies to Improve Cardiac Arrest Survival: A Time to Act, Washington, DC. http://www.nationalacademies.org/hmd/~/media/Files/Activity%20Files/PublicHealth/TreatmentofCardiacArrest/JULY%202016%20Workshop/Albert.pdf (accessed October 30, 2016).
CARES (Cardiac Arrest Registry to Enhance Survival). 2016. Cardiac Arrest Registry to Enhance Survival program. Paper prepared for the Dissemination Workshop on the Report Strategies to Improve Cardiac Arrest Survival: A Time to Act.
______. n.d. About CARES: The Cardiac Arrest Registry to Enhance Survival (CARES). https://mycares.net/sitepages/aboutcares.jsp (accessed October 30, 2016).
CDC (Centers for Disease Control and Prevention). 2016a. Data trends and maps. http://www.cdc.gov/dhdsp/maps/dtm/index.html (accessed October 30, 2016).
______. 2016b. Division Atlas of Heart Disease and Stroke. http://www.cdc.gov/dhdsp/maps/atlas/index.htm (accessed October 30, 2016).
Chen, Y., E. Argentinis, and G. Weber. 2016. IBM Watson: How cognitive computing can be applied to big data challenges in life. Clinical Therapeutics 38(4):668–701.
Frankel, M. R. 2016. Closing the gap: The Georgia Coverdell Acute Stroke Registry. Presentation at the Dissemination Workshop on the Report Strategies to Improve Cardiac Arrest Survival: A Time to Act, Washington, DC. https://www.nationalacademies.org/hmd/~/media/Files/Activity%20Files/PublicHealth/TreatmentofCardiacArrest/JULY%202016%20Workshop/Frankel.pdf (accessed October 30, 2016).
IBM (International Business Machines). 2016. About Us. https://www.explorys.com/aboutus.html (accessed October 30, 2016).
IOM (Institute of Medicine). 2015. Strategies to improve cardiac arrest survival: A time to act. Washington, DC: The National Academies Press.
Myerburg, R. J., and A. Castellanos. 2015. Cardiac arrest and sudden cardiac death. Chapter 39 in Braunwald’s heart disease: A textbook of cardiovascular medicine, 10th ed. Edited by R. O. Bonow, D. L. Mann, D. P. Zipes, and P. Libby. Oxford, UK: Elsevier.
NEMSIS (National EMS Information System) Technical Assistance Center. 2016a. NEMSIS data dictionary: EMS data standard (version date: July 13, 2016). Washington, DC: NHTSA. http://nemsis.org/media/nemsis_v3/release-3.4.0/DataDictionary/PDFHTML/DEMEMS/NEMSISDataDictionary.pdf (accessed October 30, 2016).
______. 2016b. The NEMSIS Technical Assistance Center. http://nemsis.org (accessed October 6, 2016).
NHLBI (National Heart, Lung, and Blood Institute). 2016. Sudden Cardiac Death Prevention. https://www.nhlbi.nih.gov/research/reports/sudden-cardiac-death-prevention (accessed October 30, 2016).
Smith, N. 2016. The National EMS Information System. Presentation at the Dissemination Workshop on the Report Strategies to Improve Cardiac Arrest Survival: A Time to Act, Washington, DC. http://www.nationalacademies.org/hmd/~/media/Files/Activity%20Files/PublicHealth/TreatmentofCardiacArrest/JULY%202016%20Workshop/Smith.pdf (accessed October 30, 2016).
This page intentionally left blank.