CARES: Cardiac Arrest Registry to Enhance Survival · EMERGENCY MEDICAL SERVICES/CONCEPTS CARES: Cardiac Arrest Registry to Enhance Survival Bryan McNally, MD, MPH Allen Stokes, BS,

EMERGENCY MEDICAL SERVICES/CONCEPTS

CARES: Cardiac Arrest Registry to Enhance SurvivalBryan McNally, MD, MPHAllen Stokes, BS, EMT-PAllison Crouch, MPHArthur L. Kellermann, MD, MPHFor the CARES Surveillance

Group*

From the Department of Emergency Medicine, Emory University School of Medicine, Atlanta, GA.

Despite 3 decades of scientific progress, rates of survival from out-of-hospital cardiac arrest remain low. The Cardiac ArrestRegistry to Enhance Survival (CARES) was created to provide communities with a means to identify cases of out-of-hospitalcardiac arrest, measure how well emergency medical services (EMS) perform key elements of emergency cardiac care, anddetermine outcomes through hospital discharge. CARES collects data from 3 sources—911 dispatch, EMS, and receivinghospitals—and links them to form a single record. Once data entry is completed, individual identifiers are stripped from therecord. The anonymity of CARES records allows participating agencies and institutions to compile cases without informedconsent. CARES generates standard reports that can be used to characterize the local epidemiology of cardiac arrest and helpmanagers determine how well EMS is delivering out-of-hospital cardiac arrest care. After pilot implementation in Atlanta, GA,and subsequent expansion to 7 surrounding counties, CARES was implemented in 22 US cities with a combined population of14 million people. Additional cities are interested in joining the registry. CARES currently contains more than 13,000 casesand is growing rapidly. [Ann Emerg Med. 2009;54:674-683.]

Provide feedback on this article at the journal’s Web site, www.annemergmed.com.

0196-0644/$-see front matterCopyright © 2009 by the American College of Emergency Physicians.doi:10.1016/j.annemergmed.2009.03.018

RATIONALEOut-of-hospital cardiac arrest is a leading cause of death in

the United States.1 Successful resuscitation depends on rapidperformance of 4 critical actions: notification of emergencymedical services (EMS), rapid provision of cardiopulmonaryresuscitation (CPR), immediate defibrillation of victims foundin ventricular fibrillation or pulseless ventricular tachycardia,and prompt access to definitive care.2 The collective effect ofthese actions is so important that the American HeartAssociation (AHA) coined the term “the chain of survival” morethan 15 years ago.3 Despite universal acceptance of this conceptand more than 3 decades of scientific progress in understandingthe pathophysiology of cardiac resuscitation, the overall rate ofsurvival from out-of-hospital cardiac arrest in the United Statesremains low. For reasons that are not always clear, community-specific rates of survival vary dramatically.4 Reported rates ofsurvival from witnessed ventricular fibrillation range from 2% inChicago to 46% in Seattle.5,6 However, many EMS systems donot collect data, so their managers have no idea how well orhow poorly they are doing.7

In 2004, the AHA called on researchers to developintegrated methods of data collection that will allow for“[U]niform data collection and tracking of data to facilitate

*All members are listed in the Appendix.

674 Annals of Emergency Medicine

better continuous quality improvement in hospitals,emergency medical service (EMS) systems, andcommunities.” The AHA noted that this will “. . .enablecomparison across systems for clinical benchmarking toidentify opportunities for improvement.”8 In 2006, theInstitute of Medicine (IOM) Committee on the Future ofEmergency Care in the US Health System observed thatmany EMS agencies cannot document their effect on thecommunities they serve. To strengthen accountability, theIOM challenged EMS to “collect, analyze and useperformance improvement data.”7 In 2008, the AHA calledfor out-of-hospital cardiac arrest to be made a reportableevent. It recommended that any out-of-hospital cardiac arrestreporting system include data on hospital outcomes.9

The Cardiac Arrest Registry to Enhance Survival (CARES)was developed to serve as a central repository of data aboutcardiac arrests from EMS systems throughout the United States.Through its use, it is hoped that EMS systems of any size will beable to review key performance indicators about their ownresponses to out-of-hospital cardiac arrest, including responseintervals, important aspects of care, and patients’ outcomes.Thoughtful evaluation of the information derived from CARES,including comparing local data with similar systems elsewhere,may identify opportunities to improve out-of-hospital care and
achieve better outcomes.
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http://www.annemergmed.com

McNally et al Cardiac Arrest Registry to Enhance Survival

DESIGNCore Data Elements

CARES represents a collaboration of Emory University, theCenters for Disease Control and Prevention (CDC), theSoutheastern Affiliate of the AHA, and the Sansio Corporation(Duluth, MN). It collects out-of-hospital cardiac arrest–related datafrom 3 sources that help define the continuum of care: 911dispatch centers, EMS providers, and receiving hospitals. Thenumber of mandatory data elements is limited to the minimumrequired to characterize an out-of-hospital cardiac arrest event anddocument its outcome. Candidate variables were drawn from 3existing data sets that focus on out-of-hospital cardiac arrest (asopposed to inhospital arrests)—the Utstein template, developed byan international consensus panel in 1991 and updated in 2004,8,10

the National EMS Information System, created by a panel of USexperts in 2001,11 and the Resuscitation Outcomes Consortium,created by a network of National Institutes of Health–fundedresearch institutions in 2006.12 Each variable was vetted by ourteam, with input from an ad hoc panel of national EMS experts(Appendix E1, available online at http://www.annemergmed.com).Four criteria were used: Is the variable necessary to characterize anout-of-hospital cardiac arrest event? Can it be clearly defined? Canit be objectively measured and reliably reported? Is it relevant toinfluencing or documenting the outcome? For the variable to beincluded in CARES, the answer to all 4 questions had to be yes.

This iterative process produced a core data set of 37elements, which is fewer than the elements required by Utstein,Resuscitation Outcomes Consortium, or National EMSInformation System (Table 1). For the sake of consistency,National EMS Information System data definitions were usedwherever possible. The CARES data dictionary is available athttps://mycares.net. A sample form is depicted in Figure 1.

Data CollectionOnce we defined our core data set, we devised a streamlined

process to collect it. Because out-of-hospital cardiac arresttreatment spans a continuum of care, 3 sources are required tofully characterize an out-of-hospital cardiac arrest event: (1) 911call center data (to document incident address and dispatch andunit arrival times), (2) EMS data (to capture presenting cardiacrhythm and the performance of key interventions) and (3)receiving hospital data (to document outcome at hospitaldischarge). To compile and collate data, CARES uses a secure,Health Insurance Portability and Accountability Act (HIPAA)-compliant, Internet-based data collection system developed bySansio, Inc. and managed by CARES staff. This system providesparticipating 911 call centers, EMS agencies, and hospitals withready access to their own data and the aggregate output of theregistry, but users cannot scrutinize another agency’s orhospital’s data. Unauthorized parties and outside entities cannotgain access to individual records or the performance profiles ofparticipating organizations.

Because 911 call centers, EMS agencies, and hospitalscapture and compile data differently, special procedures were
needed to collect information from each source.

911 Data elements include incident address, the time each 911call was received, the time the first responder and the transportingEMS unit were dispatched, and time each unit reached the scene.911 Center managers can either upload data in batches or submitindividual records for data entry. To ensure accurate reporting fromcommunities with multiple public safety answering points, clocksare periodically synchronized. Once the relevant information isentered, CARES automatically calculates call processing andresponse-time intervals.

EMS providers initiate the reporting process because they arebest positioned to determine that an out-of-hospital cardiacarrest has occurred. To qualify as a case, an out-of-hospitalcardiac arrest must be “worked,” meaning CPR was performedor defibrillation was attempted. If the victim is obviously deador EMS personnel honor a “do not attempt resuscitation”request, the case is excluded. To be entered in the registry, anevent must be presumptively due to cardiac disease. Cases ofasphyxia, drowning, electrocution, drug overdose, trauma, or aprimary respiratory event are excluded.

EMS providers may submit data in any of 3 ways: A 1-pagepaper form can be fed into a special scanner that autopopulatesCARES data fields, EMS services equipped with tablet or laptopcomputers can directly upload data to the CARES Web site, orEMS providers can directly file a CARES report online, using aWeb-based application with embedded error checks to enhancethe accuracy of data entry.

To ensure that no cases are missed, each participating servicecompares the official records of “worked” resuscitations to casesentered in the CARES database. If a case was not reported orkey data are missing, the providers who treated the patient arecontacted and asked to resolve the problem.

Hospital outcome is widely regarded to be the criterion standardfor assessing the effectiveness of out-of-hospital cardiac care.8 Inmost communities, the primary obstacle to securing hospital dataappears to be unwarranted fears of violating federal patientconfidentiality laws.7 Some administrators resist providing outcomedata because they fear that the process will be burdensome andcostly. To allay these fears, we created a simple, HIPAA-compliantprocess that allows hospitals to submit data through the Web. Only5 data elements are requested: emergency department (ED) outcome(admitted, died, or transferred); receiving hospital outcomeinformation (same); patient disposition (discharged home, transferredto a second hospital or rehabilitation unit, released to the morgue);Cerebral Performance Score at discharge, a simple measure offunctional status; and hypothermia treatment (if provided).

To the degree possible, reporting is automated to expedite datacollection. For example, whenever paramedics notify CARES of anew case, the system automatically e-mails the designated liaison atthe receiving hospital that a CARES patient was transported to hisor her facility. When the liaison accesses the hospital’s site throughthe CARES portal, the case is there. It takes only a few clicks toreport the patient’s outcome. If no outcome data are reported by 15days after an out-of-hospital cardiac arrest, the system automatically
sends 2 additional e-mail reminders to the hospital during the next
Annals of Emergency Medicine 675


https://mycares.net

Cardiac Arrest Registry to Enhance Survival McNally et al

Table 1. Data elements comparison: CARES, National EMS Information System, Utstein, and Resuscitation Outcomes Consortiumdata sets related to cardiac arrest information.10

Data Element

National EMSInformation

System, NationalEMS Data Set

UtsteinCardiacArrest

NomenclatureCARES Surveillance

Registry

Resuscitation OutcomesConsortium, Clinical

Trial

Patient informationPatient’s first (given) name Yes No Yes* NoPatient’s middle initial/name Yes No No NoPatient’s last (family) name Yes No Yes* NoPatient’s age Yes Yes Yes YesAge units Yes No Yes YesPatient’s date of birth Yes Yes Yes* NoPatient’s sex Yes Yes Yes YesPatient’s race/ethnicity Yes No Yes Yes

Scene informationIncident address Yes No Yes NoIncident city Yes No Yes NoIncident county Yes No No NoIncident state Yes No Yes NoIncident ZIP code Yes No Yes NoScene zone number Yes No No NoScene GPS location Yes No No NoGeospatial location of event No No No Yes

†

Incident location type Yes Yes Yes Yes911 responder information

Date of cardiac arrest Yes Yes Yes YesEMS agency ID Yes No Yes YesEMS vehicle ID Yes No No YesNumber of EMS personnel Yes No No YesService level Yes No No YesEMS call number Yes No Yes NoFire/first responder service ID Yes No Yes NoOther EMS agencies at scene Yes No No NoOther services at scene Yes No No No

Situation informationComplaint reported by dispatch Yes No No NoCardiac arrest (yes/no) Yes Yes No NoCardiac arrest cause Yes Yes Yes YesContributing factors No No No YesEvidence of implantable defibrillator No No No YesArrest witnessed Yes “arrest

witnessed by”Yes Yes Yes

Arrest after arrival of 911 responder Yes (by abovequestion)

Yes Yes Yes

Resuscitation attempted by 911 responder Yes Yes Yes YesCPR information

Who initiated CPR Yes (by otherCPR questions)

No Yes Yes (by other CPRquestions)

Bystander CPR Yes (by “previousaid preformedby”)

Yes Yes (by “whoinitiated CPR”)

Yes

CPR performed Yes Yes Yes (by “whoinitiated CPR”)

Yes

Chest compressions No Yes No NoChest compressions (by EMS) No No No YesAssisted ventilation Yes (by below

question)Yes No No

Type(s) of airway intervention(s) used Yes No No Yes‡

Reason CPR discontinued Yes No No NoMonitor/defibrillator information

First monitored rhythm of the patient Yes No No No
First arrest rhythm of the patient No Yes Yes No
676 Annals of Emergency Medicine Volume , . : November


Table 1, continued. Data elements comparison: CARES, National EMS Information System, Utstein, and Resuscitation OutcomesConsortium data sets related to cardiac arrest information.10 (continued)

Data Element

National EMSInformation

System, NationalEMS Data Set



Registry


Trial

First arrest rhythm of the patient (monitored by EMS) No No No YesWho first applied AED or monitor/defibrillator Yes (by other

monitor/defibrillatorquestions)

No Yes Yes (by other monitor/defibrillator questions)

Bystander AED/defibrillator applied Yes (by “previousaid preformedby”)

Yes Yes (by “who firstapplied AED ormonitor/defibrillator”)

Yes

Defibrillation attempted Yes Yes Yes (by “who firstapplied AED ormonitor/defibrillator”)

Yes

Was an AED used during resuscitation No No Yes NoAdvanced monitor used Yes No No Yes#

Of AED shocks Yes No Yes No#

Of manual shocks Yes No Yes NoOther out-of-hospital treatment information

Previous aid preformed by (before EMS) Yes No No NoOutcome of previous aid (before EMS) Yes No No NoDrug therapies Yes Yes No YesIV/IO line used Yes No No YesHypothermia Yes No Yes

§Yes

ROSC Yes Yes Yes YesSustained ROSC No Yes Yes Yes

Out-of-hospital disposition informationOut-of-hospital disposition No No Yes Yes (by 4 questions

below)Died at scene or en route Yes No Yes (by “out-of-

hospitaldisposition”)

Yes

Reason not treated or why treatment halted Yes No No YesAlive and not transported by EMS to hospital/ED No No No YesTransported to hospital/mode of transport Yes No Yes (by “out-of-

hospitaldisposition”)

Yes

End of event/patient status at ED No Yes Yes YesHospital information

Date of ED/hospital arrival Yes No Yes YesDestination hospital ID Yes No Yes YesCardiac rhythm on arrival at destination Yes No No NoED outcome Yes No Yes NoInterhospital transfer to another acute hospital No No Yes (by “ED

outcome”)Yes

Date of interhospital transfer to another acutehospital

No No No Yes

Hospital outcome Yes Yes Yes YesDate of discharge or death No Yes No YesDischarge destination No No Yes NoNeurologic status at discharge Yes Yes Yes No

CAD time informationAgency CAD ID No No Yes NoCAD call number Yes No Yes NoEms call received time

�Yes Yes Yes Yes

EMS dispatched time Yes No Yes YesEMS unit notified by dispatch time Yes No No NoEMS en route time Yes Yes

¶No No

EMS on scene time Yes Yes¶

Yes YesEMS on scene time (for first ALS crew) No No No YesEMS arrived at patient time Yes Yes

#No Yes

#
EMS left scene time Yes Yes No Yes
Volume , . : November Annals of Emergency Medicine 677


few days. If outcome data are still missing 30 days after the event,the system prompts a CARES administrator to call the hospitalcontact.

Data Linkage and StorageIf a community’s computer aided dispatch system

autogenerates a common case identifier, CARES uses thisnumber to link 911, EMS, and hospital reports to form a

Table 1, continued. Data elements comparison: CARES, NationConsortium data sets related to cardiac arrest information.10 (c

Data Element

National EInformati

System, NatEMS Data

Transfer to aeromedical time YesEMS arrived at hospital/ED time YesEMS back in service time YesEMS cancelled time YesFirst responder call received time

�No

First responder dispatched time NoFirst responder on scene time Yes “date/ti

initialresponderarrived onscene”

Treatment time informationIncident or onset date/time YesEstimated time of arrest before EMS arrival YesTime of arrest (if EMS witnessed) NoTime arrest confirmed NoTime of first rhythm analysis/assessment of needfor CPR

No

Time of first CPR NoTime of first CPR (by EMS) YesTime when vascular access achieved NoTime tracheal intubation achieved NoTime of EMS shock assessment YesTime of first defibrillation NoTime of first defibrillation (by EMS) YesTime when medication given YesTime of ROSC NoTime of end of ROSC NoTime of awakening NoTime CPR stopped/terminated Yes “time

resuscitatdiscontinu

Time of death No

IV, Intravenous; IO, intraosseous, ROSC, return of spontaneous circulation.This table does not represent a full, comprehensive summary of all the fields andsortium. It is intended only for general comparison between the data sets.*CARES only temporarily collects patient identifiers (name and date of birth) to erecord is deemed complete by the CARES staff, the record is deidentified of nam†The Resuscitation Outcomes Consortium uses a combination of census tract, lathe cardiac arrest incident.‡The Resuscitation Outcomes Consortium collects data for bag-valve-mask, esopgeal obturator airway, oral endotracheal, cricothyrotomy, ventilator, nasal endotra§CARES will start collecting hypothermia data starting summer 2008.�Call received time (for EMS and first responder) may vary by organization, depening point call time, depending on what times are locally recorded or available.¶Utstein: Indicates recommended as supplemental data element.#Utstein: Indicates in original data set but removed in newer version.

complete record. If a community’s computer aided dispatch


system lacks this capability, reports are linked by probabilisticmatching. In most instances, reports are matched by patientname and the incident’s time, date, and location. Once linkageis complete, the record is reviewed for accuracy. At this point,the case’s individual identifiers are permanently stripped fromthe record. Once a record is permanently entered in the CARESdatabase, no further edits can be made.

The anonymity of CARES data is a major advantage.

MS Information System, Utstein, and Resuscitation Outcomesnued)



Registry


Trial

No No YesYes

#No Yes

No No NoNo No NoNo Yes NoNo Yes NoNo Yes No

No No NoNo No NoYes No YesYes

#No No

Yes No No

Yes No NoNo No YesYes

¶No No

Yes#

No NoNo No YesYes No NoNo No YesYes

#No No

Yes¶

No YesYes

#No No

Yes#

No NoYes No Yes

Yes No No

elds in the National EMS Information System or Resuscitation Outcomes Con-

accuracy in matching the EMS records with the hospital outcomes. After thedate of birth./longitude, and universal transverse Mercator (UTM) to capture the location of

l-tracheal twin-lumen airway device (Combitube)/laryngeal mask airway/esopha-continuous positive airway pressure, and rapid sequence intubation.

n local CAD structure. This may be a primary or secondary public safety answer-

al Eonti

MSonionalSet

me

ioned”

subfi

nsuree andtitude

hageacheal,

ding o

Because the registry contains only deidentified reports and uses


S E


HIPAA-compliant procedures, Emory University’s institutionalreview board ruled that participating agencies and institutionsmay collect data without informed consent.

Analysis and Production of ReportsCARES allows its users to generate standard reports or

conduct custom queries. Because CARES data are anonymous,aggregated reports can be shared without fear of compromisinga patient’s or service’s confidentiality. Each organization has24-hour access to its own profile but not individual access toothers. However, participating organizations are able tocompare their performance against that of their peers bybenchmarking against a regularly generated summary nationalreport. Outside parties cannot gain access to patient- or service-specific data. They can only examine reports at the aggregate

1 - Street Address (Where Arrest Occurred)

1 - City

Cardiac Ar

14 - Location Type

Farm

Mine / Quarry

Industrial Place

Recreation/Sport

Street/HwyPublic Building

Educational Inst. Airport

Home/ Residence

Nursing HomeResidence/InstitutionPhysician Office/Clinic

Hospital

Jail

Other

SH3001 (1 of 1), Rev 3, 04/06 Copyright 20

Arrest Information

First Responding Agency

Witnessed Arres

Unwitnessed Arr

15 - Arrest Witnessed

32 - First Name

5 - Date of Birth

YesNo

18 - Resuscitation Attempted by EMS

Ventricular Fibrillation

Ventricular Tachycardia

Asystole

Idioventricular/PEA

23 - First Arrest Rhythm of Patient

Unknown Shockable Rhythm

Unknown Unshockable Rhythm

Resuscitation Information

First Cardiac Arrest Rhythm of Patient and ROSC Information

26Yes

No

24 - ROSC

Yes

No

25 - Sustained ROSC

YesNoAED Present but not U

21 - Was an AED Used D

AED Malfunctioned

# 0f AED Shocks

# 0f Manual Shocks

Not Applicable

Lay Person

Lay Person Family Member

Lay Person Medical Provider

First Responder

Responding EMS Personnel

Hospital Destination

Part A : Dem ographic Inform ation

Part B : Run Inform ation9 - Call #8 - Date of Arrest

/ /

4 - AgeDays

Months

Years

11 - Fire/First Responder

20 - Who Initiated CPR

Figure 1. CARE

level.


Standard CARES output includes histograms thatgraphically depict 911 call handling and response intervals.“Call to Dispatch” histogram provides insight into the efficiencyof a community’s 911 call center. The “Dispatch to UnitArrival,” histogram depicts the intervals required for the firstpublic safety provider to reach the scene (whether it is fire,police, or EMS). The “Call to Unit Arrival” interval depicts thesystem’s overall response time (Figure 2).

CARES also captures incident location data so that EMSsystem managers can assess where and in what type of locationsout-of-hospital cardiac arrest occurs. This can be used to guidecommunity-level interventions, such as neighborhood-specificCPR training programs, public access automated externaldefibrillators, and first-responding fire companies. In the nearfuture, geographic information system software may be added to

1 - State 1 - Zip Code

t Registry

io (Page 1)

Presumed Cardiac Etiology

Trauma

Respiratory

Drowning

17 - Presumed Cardiac Arrest Etiology

Electrocution

Other

Yes

No

6 - Arrest After Arrival of EMS

ame

6 - GenderMale

Female

Dead in Field

Pronounced Dead in ED

Ongoing Resuscitation in ED

27 - End of the Event

itation not initiated at scene due to signs of death, DNR, resuscitationred futile, or resuscitation is not

d

itation terminated at scene due tol control order, protocol/policyments completed

orted to Hospital with or without

f Hospital Disposition

esuscitation

Lay Person

Lay Person Medical ProviderFirst Responder

22 - Who First Applied Monitor/Defibrillator, AEDNot Applicable

Lay Person Family Member

Destination Hospital

AsianBlack/African-American

American-Indian/AlaskaNative Hawaiian/Pacific IslanderWhite

Unknown28 - Race/Ethnicity

Responding EMS Personnel

Hispanic/Latino

MS data form.

res

08 Sans

1

t

est

- Last N

Resuscobviousconsiderequire

Resuscmedicarequire

TranspROSC

- Out o

sed

uring R

12 -

enable participating cities to map events and display them in



relation to neighborhood landmarks and various physical andsocial characteristics.

PILOT IMPLEMENTATIONOnce the registry was created, we first implemented it in

Atlanta, GA, a city served by a single advanced life support EMSservice (Grady EMS), 1 first-responding fire department (theAtlanta Fire Department), a single 911 computer aided dispatchcenter (Fulton County 911), and a relatively small number ofhospitals. After a 12-month period of pilot testing andrefinement, during which CARES collected and linked data onmore than 600 cases of out-of-hospital cardiac arrest, theregistry was expanded to 7 surrounding counties, an areaencompassing 2,000 square miles and a population of roughly 3million. This phase provided a stringent test of the registry’scapacity to identify and link cases in a complex,multijurisdictional setting.

Historically, hospitals and EMS services in metro Atlanta werereluctant to share data. The sheer number and diversity of 911centers, EMS agencies, fire departments, and hospitals posed asignificant challenge. To satisfy the needs of participants, CAREShad to be flexible enough to accommodate multiple methods ofdata submission and still link records from different jurisdictions.Nearly every EMS service that participated in this phase of theproject works with multiple first-responding services. Many receivecalls from more than one 911 center. Strategies were devised toovercome all of these difficulties (Appendix E2, available online at

Figure 2. A sample EMS response time report. The respectitime to be viewed separately from the ambulance responseintervals can also be generated.

http://www.annemergmed.com)


EARLY EXPANSIONFor many EMS systems, this is their first effort to

systematically collect and evaluate data related to the continuumof care for out-of-hospital cardiac arrest.

CARES was expanded to more than 21 communities outsideGeorgia. Additional communities have expressed an interest injoining. Currently, CARES is processing data from 32 computeraided dispatch centers, 108 first-responder agencies, 31 EMSsystems, and more than 200 receiving hospitals in 13 states(Figure 3). Approximately 14 million people reside incommunities that are participating in CARES.

CASE REPORTINGTo date, CARES has compiled data on more than 13,000

cases of out-of-hospital cardiac arrest. The typical time fromevent to EMS data submission is 1 week (daily in a few siteswith electronic patient care records). Delinquent reports andcases with missing data are requested at the end of each calendarmonth. According to initial audits and feedback from CARESsite directors in 15 participating cities, we estimate that theregistry is capturing at least 95% percent of eligible cases. Withthe exception of race, a social construct largely determined byself-report,13 every element of the CARES data set is beingconsistently reported. The proportion of missing data rangesfrom a high of 25% for victim race to a low of 1% for patientname (permanently stripped from each record once data linkageis completed). Hospitals are reporting outcome data in more

tervals are provided that allow for the dispatch process. A report for first responder times using these same

ve intime

than 99% of cases. In 40 months of operation, there have been



urren


no breaches of confidentiality and no patient or family membercomplaints. No call center, EMS service, hospital, orcommunity has withdrawn from the registry.

LIMITATIONSCARES’ greatest strength—simplicity—is also its greatest

weakness. It is designed to collect the minimum number ofvariables required to characterize the treatment and outcome ofan out-of-hospital cardiac arrest event. Participating systemsmay choose to collect additional data elements for their ownuse, but CARES is not intended to be all things to all people.

Determining that a cardiac arrest is due to heart disease issubjective. The AHA has conceded that “no uniformly applieddefinition of cardiac arrest exists.”9 In general, out-of-hospitalcardiac arrest is ascribed to heart disease unless there is anobvious alternate cause, such as major trauma, drowning,electrocution, drug overdose, asphyxia, or exsanguination.Because few victims are autopsied, it is often impossible toassign a definitive cause of death.

The anonymous nature of CARES records precludes theregistry from being used for patient-specific inquiries or casereviews. CARES cannot be used to contact survivors for long-term follow-up. Had we desired this capability, we would havehad to secure written, informed consent from every patient orthe legally authorized representative, a prohibitive task.

DISCUSSIONThe CDC defines public health surveillance as “the ongoing,

CARES S

Designates sites active prior to December 1, 2008

Figure 3. CARES national map of c

systematic collection, analysis, interpretation, and dissemination


of data about a health-related event for use in public healthaction to reduce morbidity and mortality and to improvehealth.”14 According to the CDC, surveillance serves a numberof public health functions, including supporting case detectionand public health interventions, estimating the effect of a diseaseor injury, portraying the natural history of a health condition,determining the geographic distribution and spread of illness,generating hypotheses and stimulating research, evaluatingprevention and control measures, and facilitating planning.15

CARES satisfies many aspects of this definition. We designed itto facilitate the timely collection, analysis, and interpretation ofout-of-hospital cardiac arrest data so it can be quickly sharedwith those who need to know.16

The concept of making a noncommunicable disease such asout-of-hospital cardiac arrest a “reportable event” may beperplexing to some. Out-of-hospital cardiac arrest is notimmediately preventable and, for individual victims, the event isfinal. But out-of-hospital cardiac arrest reporting can produceseveral benefits. First, consistent collection of performance andoutcome data can pinpoint opportunities to improve treatmentof the next cardiac arrest victim. Second, the system’sbenchmarking features, which allow communities to comparehow well they perform relative to other communities, may fostergreater support for EMS. And third, ongoing monitoring of theincidence and outcomes of this particularly lethal form of heartdisease may help local public health officials focus the public’sattention on the value of primary prevention. Over time,

ES 2009

Designates sites added since December 1, 2008

t sites with active data collection.

IT

CARES may allow participating communities to document the



beneficial effects of population interventions, such as enactmentof an indoor air ordinance or improved access to primary care.17

As a public health surveillance system, CARES differs fromtypical research databases (Appendix E3, available online athttp://www.annemergmed.com). Research databases aredesigned to answer hypotheses, rather than monitor populationhealth.18 They are generally more complex, costly, and laborintensive than a typical surveillance system.

The Resuscitation Outcomes Consortium is a prime exampleof a research database. 12 Created by a national network ofresearch institutions, with funding provided by the NationalInstitutes of Health, the Resuscitation Outcomes Consortium isdesigned to test promising treatments for out-of-hospital cardiacarrest and life-threatening trauma. CARES was not created forthis purpose. It was designed to help communities monitor theirsuccess at achieving each link in the AHA’s “chain of survival”3

to identify opportunities to improve rates of out-of-hospitalcardiac arrest survival. If and when the Resuscitation OutcomesConsortium identifies a new technique for treating out-of-hospital cardiac arrest, it will be important to quicklydisseminate it throughout the nation and assess its effect.CARES is ideally suited to this task. Its core data set can besupplemented at any time. For example, several cities currentlyparticipating in CARES have recently added a single dataelement to document out-of-hospital initiation of hypothermia.

There is a clear need for tools to help communities monitor andimprove delivery of emergency cardiac care. AHA has observed that“[t]here is extensive variation in reported outcome after the onset ofcardiac arrest. . .This disparity in survival rates reemphasizes that aneffective EMS system can decrease disability and death from acutecardiovascular events in the out of hospital setting.”9 Nichol et al4

observed that if out-of-hospital cardiac arrest survival could beincreased throughout the United States to the level reported by thehighest-performing community in their study of out-of-hospitalcardiac arrest outcomes, 15,000 premature deaths could beprevented each year.4

The National EMS Information System is not a researchdatabase, but it also differs markedly from CARES. UnlikeCARES, which focuses on a single condition, the National EMSInformation System is designed to capture the full spectrum ofEMS encounters. It is therefore larger and much more complex.And the National EMS Information System has an importantlimitation: unlike CARES and the Resuscitation OutcomesConsortium, it does not collect data on hospital outcomes.

Communities wary of tackling the National EMSInformation System may make their initial foray into electronicdata collection through CARES. A favorable experience mayencourage them to adopt the National EMS InformationSystem at a later date. In the meantime, many EMS managersmay opt to use out-of-hospital cardiac arrest as a sentinelcondition to assess their system’s capabilities to manage time-critical events. In Emergency Medical Services at the Crossroads,7

the IOM Committee on the Future of Emergency Care
endorsed this approach:

“While a full-blown data collection and performancemeasurement and reporting system is the desired ultimate outcome,the committee believes a handful of key indicators of regionalsystem performance should be collected and promulgated as soonas possible. These could include, for example, indicators of 911 callprocessing times, EMS response times for critical calls, andambulance diversions. In addition, consensus measurement of EMSoutcomes could be applied to two to three sentinel conditions. Forexample, emergency and trauma care systems across the countrymight be tasked with providing data on conditions such as cardiacarrest, pediatric respiratory arrest, and major blunt trauma withshock. Data from different system components would allowresearchers to measure how well the system performs at each level ofcare (911, first response, and ED).”7

CONCLUSIONAn adage from the business world states, “You can’t manage

what you can’t measure.”19 This concept is equally applicable toEMS. The IOM Committee on the Future of Emergency Careenvisions a day when our nation will be served by “coordinated,regionalized and accountable emergency care systems.”7 Thiscannot happen without uniform procedures to collect and analyzeperformance improvement data. We created CARES to helpcommunities of every size assess their treatment of out-of-hospitalcardiac arrest, with the goal of improving rates of survival. For someof our participating systems, CARES represents their first effort tosystematically collect, link, and evaluate data related to care of out-of-hospital cardiac arrest. We hope that others will follow.

Technical assistance from the CDC staff was provided byMichael D. Matters, MD, MPH, and Jing Fang, MD, MPH.

Supervising editor: Theodore R. Delbridge, MD, MPH

Funding and support: By Annals policy, all authors are requiredto disclose any and all commercial, financial, and otherrelationships in any way related to the subject of this articlethat might create any potential conflict of interest. See theManuscript Submission Agreement in this issue for examplesof specific conflicts covered by this statement. Funding for theCardiac Arrest Registry to Enhance Survival (CARES) isprovided by cooperative agreement from the Centers forDisease Control and Prevention grant number MM-0917-05/05. The American Association of Medical Colleges is the grantadministrator for CARES.

Publication dates: Received for publication June 29, 2008.Revisions received December 30, 2008, and March 7, 2009.Accepted for publication March 11, 2009. Available onlineApril 25, 2009.

Address for reprints: Bryan McNally, MD, MPH, Department ofEmergency Medicine, Emory University School of Medicine,531 Asbury Circle Annex, Suite N340, Atlanta, GA 30322;
E-mail [email protected].


mailto:[email protected]


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Circulation. 1989;79:756-765.2. 2005 American Heart Association guidelines for cardiopulmonary

resuscitation and emergency cardiovascular care. Circ. 2005;112:iv-20.

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4. Nichol G, Thomas E, Callaway C, et al. Regional variation in out-of-hospital cardiac arrest incidence and outcome. JAMA. 2008;300:1423-1431.

5. Rea TD, Eisenberg MS, Sinibaldi G, et al. Incidence of EMS-treated out-of-hospital cardiac arrest in the United States.Resuscitation. 2004;63:17-24.

6. Eisenberg MS, Horwood BT, Cummins RO, et al. Cardiac arrestand resuscitation: a tale of 29 cities. Ann Emerg Med. 1990;19:179-186.

7. Institute of Medicine of the National Academies Committee onthe Future of Emergency Care in the United States HealthSystem. Emergency Medical Services at the Crossroads.Washington, DC: National Academies Press; 2007:207-230.

8. Jacobs I, Nadkarni V, Bahr J, et al; International LiaisonCommittee on Resuscitation; American Heart Association;European Resuscitation Council; Australian Resuscitation Council;New Zealand Resuscitation Council; Heart and Stroke Foundationof Canada; InterAmerican Heart Foundation; ResuscitationCouncils of Southern Africa; ILCOR Task Force on Cardiac Arrestand Cardiopulmonary Resuscitation Outcomes. Cardiac arrest andcardiopulmonary resuscitation outcome reports: update andsimplification of the Utstein templates for resuscitation registries:a statement for healthcare professionals from a task force of theInternational Liaison Committee on Resuscitation (American HeartAssociation, European Resuscitation Council, AustralianResuscitation Council, New Zealand Resuscitation Council, Heartand Stroke Foundation of Canada, InterAmerican HeartFoundation, Resuscitation Councils of Southern Africa).Circulation. 2004;110:3385-3397.

9. Nichol G, Rumsfeld J, Eigel B, et al. Essentials features ofdesignating out-of-hospital cardiac arrest as a reportable event.Circulation. 2008;117:2299-2308.

10. Cummins RO, Chamberlain DA, Abramson NS, et al.Recommended guidelines for uniform reporting of data from out-of-hospital cardiac arrest: the Utstein Style. A statement forhealth professionals from a task force of the American HeartAssociation, the European Resuscitation Council, the Heart andStroke Foundation of Canada, and the Australian ResuscitationCouncil. Circulation. 1991;84:960-975.

11. National Emergency Medical Services Information System.NEMSIS Data Dictionary version 2.2.1. National EmergencyMedical Services Information System Web site. Available at:http://www.nemsis.org/softwareDevelopers/downloads/
datasetDictionaries.html. Accessed March 6, 2007.

12. National Institutes of Health News. New federally funded researchprogram aims to improve survival from cardiac arrest and severetrauma. US Department of Health and Human Services. ReleasedMarch 24, 2006.

13. Mays VM, Ponce NA, Washington DL, et al. Classification of raceand ethnicity: implications for public health. Annu Rev PublicHealth. 2003;24:83.

14. Centers for Disease Control and Prevention. Updated guidelinesfor evaluating public health surveillance systems:recommendations from the guidelines working group. MMWRMorb Mortal Wkly Rep. 2001;50:RR-1.

15. Teutsch SM, Churchill RE. Principles and Practice of Public HealthSurveillance. 2nd ed. Oxford, England: Oxford University Press;2000.

16. Teutsch S, Thacker S. Planning a public health surveillancesystem. Epidemiol Bull. 1995;16:21.

17. Cesaroni G, Forastiere F, Agabiti N, et al. Effect of the Italiansmoking ban on population rates of acute coronary events.Circulation. 2008;117:1183-1188.

18. Thacker SB, Berkelman RL. Public health surveillance in theUnited States. Epidemiol Rev. 1988;10:164-190.

19. Alter M. You can’t manage it if you can’t measure it. NationalFederation of Small Business. Available at: http://www.nfib.com/object/IO_23800.html. Accessed April 3, 2009.

APPENDIX. CARES Surveillance Group.Mike Levy, MD (Anchorage, Alaska (Anchorage Fire Depart-

ment/EMS, Anchorage, AK); Ian Greenwald, MD, Earl Grubbs,MD, Eric Ossmann, MD (Clayton, Cobb, Douglas, Fulton,Gwinnett, Newton, and Rockdale Counties, Metropolitan At-lanta, Georgia ); Louis Gonzales, BS, EMT-P (Austin TravisCounty EMS, Austin, TX); David Hall, MD (Baytown EMS,Baytown, TX); Peter Moyer, MD, Sophia Dyer, MD, (BostonEMS, Boston, MA); Donald Locasto, MD (Cincinnati Fire De-partment—EMS, Cincinnati, OH); David Ross, MD (Multi-agency EMS, Colorado Springs, CO); David Keseg, MD (Co-lumbus Fire Department–EMS, Columbus, OH); Joe Barger,MD (Contra Costa County EMS, Contra Costa County, CA);Chris Colwell, MD (Denver Health Paramedic Division, Denver,CO); James Leaming, MD (Penn State Life Lion EMS, Hershey,PA); David Persse, MD (Houston Fire Department—EMS,Houston, TX); Joseph Salomone, MD (Metropolitan AmbulanceServices Trust, Kansas City, MO); Dave Slattery, MD (Las VegasFire-Rescue, Las Vegas, NV); Corey Slovis, MD (Nashville FireDepartment—EMS, Nashville, TN); Bob Swor, MD (WilliamBeaumont Hospital, Oakland County, MI); Brent Myers, MD(Wake County EMS, Raleigh-Durham, NC); Joe Ornato, MD(Richmond Ambulance Authority, Richmond, VA); Karl Sporer,MD (San Francisco Fire Department—EMS, San Francisco,CA); Jeff Luther, MD (Sioux Falls REMSA, Sioux Falls, SD); BenOsborne, MD (Multi-agency EMS, Springfield, MA); Angelo
Salvucci, MD(Multi-Agency EMS, Venture County, CA).
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APPENDIX

Mickey Eisen

Arthur Yance

683.e1 Anna

E1. CARES data element ad hoc panel (blinded).

berg, MD, PhD, University of Washington School of Medicine
Ray Fowler, MD, University of Texas SouthwesternIan Greenwald, MD, Emory University School of MedicineRichard Hunt, MD, Center for Disease Control and PreventionGreg Mears, MD, University of North Carolina School of MedicinePeter Moyer, MD, PhD, Boston University School of MedicineEric Ossmann, MD, Emory University School of Medicine
y, MD, MPH, Emory University School of Medicine

of data elements and linkage CARES.
Appendix E2. Diagram: importance
ls of Emergency Medicine Volume , . : November

Appendix E3. Distinctions between public health surveillance and epidemiologic research.

Public Health Surveillance Epidemiologic Research

Reason for initiating data Problem detection Hypothesis testing
collection Problem description
Identify cases for epidemiologic studiesMay be legally requiredMonitor geographic and temporal

trends in disease occurrence

Problem description

Frequency of datacollection

Ongoing Usually time-limited

Method of data collection Established systems or proceduresMany persons involvedTraditionally depends on voluntary

participation

Special procedures tailored to hypotheses orquestions of interest

Fewer persons involvedDepends on paid, supervised employees

Amount of data collectedper case

Usually minimal Can be considerable and usually detailed

Completeness of datacollected

Often incomplete Usually complete

Analysis of data Traditionally simplePrimarily to detect change in incidenceUsually historical comparison groups

Can be complexHypothesis testing often requires statistical

methodsConcurrent controls

Dissemination of data TimelyRegularReview in public health agencyTargeted to public health and clinical

audience

Not timelySporadicExternal reviewTargeted to academic as well as public health

and clinical audienceUse of data Identifies a problem

Triggers interventionSuggest hypothesesCommonly used to evaluate programsEstimates magnitude of a problem

Describes a problem in detailProvides etiologic informationTests hypotheses, suggests additional

hypothesesLess often used to evaluate programs

Adapted from Table 1 in Thacker SB, Berkelman RL. Public health surveillance in the United States. Epidemiol Rev. 1988;10:164.

Volume , . : November Annals of Emergency Medicine 683.e2

Documents

CARES: Cardiac Arrest Registry to Enhance Survival · EMERGENCY MEDICAL SERVICES/CONCEPTS CARES: Cardiac Arrest Registry to Enhance Survival Bryan McNally, MD, MPH Allen Stokes, BS,