INTRODUCTION
Hospital emergency departments (EDs) in the United States serve
a unique role in health care delivery. They are the only institutional providers
mandated by federal law to evaluate anyone seeking care. They are expected at
least to stabilize the most severely ill and injured patients, and they are
primary care providers for vast numbers of people who lack access to a regular
source of health care services. Because of the case mix and volume of patients
they treat, the estimated 4,800 EDs in the United States are well positioned to
provide data for public health surveillance, community risk assessment,
research, education, training, quality improvement, health care administration
and finance, and other uses (Garrison et al., 1994). However, variations in the
way that data are entered in different ED record systems, and even within
individual systems, impede the use of ED records for patient care and deter
their reuse for multiple secondary applications. The content and format of
records differ from site to site, and incompatibilities exist in many data
definitions and codes. Further standardization is needed, particularly if the
rapidly accelerating pace of computerization is to facilitate rather than
complicate aggregation and analysis of data from multiple EDs.
Several related initiatives are under way in the United States
to foster more uniform emergency care data. The Centers for Disease Control and
Prevention’s (CDC) National Center for Injury Prevention and Control
(NCIPC) is coordinating one of these initiatives - a public-private partnership
that has developed recommended specifications for many of the observations,
actions, instructions, and conclusions that are entered in ED records. Data
Elements for Emergency Department Systems, Release 1.0 (DEEDS) is the
initial product of this broad-based, collaborative effort.
Purpose and Scope
DEEDS is intended for voluntary use by individuals and
organizations responsible for maintaining or improving record systems in
24-hour, hospital-based EDs. DEEDS is not a set of mandates, but rather
it is designed to provide uniform specifications for data elements that decision
makers may choose to retain, revise, or add to their ED record systems. The
purpose of DEEDS is not to establish an essential or minimum data set but
to foster greater uniformity among individual data elements chosen for use. If
the recommended data elements are uniformly recorded and the data are made
available with appropriate safeguards to numerous legitimate users, then
problems - such as data incompatibility and high costs of collecting, linking,
and using data - can be substantially reduced. Concurrent with progress toward
more uniform and accessible health data, existing methods of protecting the
confidentiality of patient-, practitioner-, and institution-specific data must
be strengthened (Institute of Medicine, 1994).
To the fullest extent possible, the specifications for
individual data elements in Release 1.0 incorporate existing health data
standards, particularly standards for computer-based records. A major objective
of the DEEDS initiative is to provide uniform data elements that
harmonize with prevailing standards for electronic data entry and exchange.
However, many specifications also are relevant to paper-based records, which EDs
throughout the United States are likely to use to a varying extent for years to
come Release 1.0 is designed to serve as a compendium of data elements
and as a technical reference on automation of ED data. The 156 data elements are
organized into eight sections and numbered sequentially within each section. A
structured format is used to document each data element: a concise
Definition, a description of Uses, a Discussion of
conceptual or operational issues, specification of the Data Type (and Field
Length), a description of when data element Repetition may
occur, Field Values that designate coding specifications and valid data
entries, reference to one or more Data Standards or Guidelines used to
define the data element and its field values, and Other References
considered in developing the data element. Data types and field lengths used
in Release 1.0 conform to specifications in Health Level 7 (HL7),
a widely used protocol for electronic data exchange (HL7, 1996), and
ASTM’s (formerly known as the American Society for Testing and
Materials) E1238-94: Standard Specification for Transferring Clinical
Observations Between Independent Computer Systems (ASTM, 1994). The
Technical Notes at the end of this document provide a detailed description of
data types and conventions for addressing missing, unknown, and null data as
well as recommendations for dealing with data elements that are not applicable
to selected groups of patients. The Appendix outlines how the data elements can
be mapped to HL7 data fields and segments. Readers may refer to the
Technical Notes and Appendix as needed to answer specific questions.
Release 1.0's scope of coverage comprises data elements
that can serve multiple secondary purposes once they have been used for
immediate patient care and administrative functions. Among the most important of
these elements are those diagnoses of patients’ conditions that
practitioners typically record at the end of visits. Because of the clinical
services they provide, ED practitioners often make diagnoses that call for
preventive countermeasures at the individual and population levels. For example,
when some conditions are diagnosed (e.g., suspected child abuse), ED staff are
man-dated by law to communicate findings to agencies that protect the safety of
at-risk individuals. With other ED diagnoses (e.g., meningococcal disease),
staff must transmit data to public health agencies responsible for preventing
and controlling disease outbreaks.
Additional data elements, beyond the scope of Release
1.0, are needed to ensure that records of individual ED visits are complete.
These data elements include documentation of patients’ informed consent to
disclose person-identifiable data to authorized users. The multidisciplinary
process that produced Release 1.0 can be used in the future to develop
specifications for additional data elements.
Several data elements in Release 1.0 are not routinely
recorded in EDs, but interest in their use is mounting. For example, more
routine collection of observations about ED patient outcomes and patient
satisfaction is on the horizon. The patient outcomes and patient satisfaction
data elements in Release 1.0 provide a framework for data entry, but
further work is needed to develop methods of gathering and analyzing relevant
observations.
The scope of Release 1.0 is not limited to data recorded
by physicians and nurses. Patient identifiers entered by registration personnel,
clinical data recorded by allied health professionals, and medical codes
assigned by health information specialists also are included.
How DEEDS Was Developed
The impetus for developing DEEDS was a 1994 national
conference on the status of emergency medicine sponsored by the Josiah Macy, Jr.
Foundation (Bowles, 1995). Numerous Macy conference participants acknowledged
that shortcomings in available data limit our capacity to answer many
fundamental clinical, epidemiologic, and health care service questions about ED
patients. As a result, participants representing the major emergency medicine
and nursing professional associations expressed a keen interest in joining CDC
in sponsoring a national workshop on the development of ED record systems.
CDC invited six professional associations and three federal
agencies to cosponsor, plan, and convene the National Workshop on Emergency
Department Data - the Agency for Health Care Policy and Research, American
College of Emergency Physicians, American Health Information Management
Association, American Hospital Association, Emergency Nurses Association, Health
Resources and Services Administration, National Association of Emergency Medical
Services Physicians, National Highway Traffic Safety Administration, and Society
for Academic Emergency Medicine.
Representatives of these agencies and associations (the workshop
planning group) met in 1994 and 1995 to define the goals for the workshop, set
the agenda, draft the proposed data elements, invite other agencies and
organizations to participate, and select work-shop facilitators. The National
Workshop on Emergency Department Data was held in January 1996, providing a
public forum for review and discussion of an early draft of DEEDS. The
160 workshop participants, among them representatives of 12 federal agencies and
35 professional associations, contributed many valuable recommendations for
improving the document. The workshop planning group and facilitators,
reconstituted as the DEEDS Writing Committee, met in April 1996 and
incorporated as many workshop recommendations as possible into a revised version
of the data elements. Review of this revision began in July 1996. The DEEDS
Writing Committee met again in October 1996 to act on reviewers’ input
and completed work on Release 1.0 in January 1997.
Next Steps
This initial release of DEEDS is intended to serve as a
starting point. Many data element definitions and coding specifications are new,
and field testing is necessary to evaluate them. Systematic field studies are
needed to gauge the usefulness of Release 1.0 for direct patient care and
a variety of secondary purposes, identify optimal methods of data collection,
and specify resource requirements for implementation. Prospective users of
Release 1.0 are invited to contact Daniel A. Pollock, M.D., at NCIPC to
discuss their plans for evaluating or using some or all of the recommended data
elements. Lessons learned through field use and evaluation will be a valuable
source of input for subsequent revisions, but all comments and suggestions for
improving DEEDS are welcome.
For some data elements in Release 1.0, additional
research and development are needed to design coding specifications or to select
a coding system from the available candidates. Work is needed on codes for
emergency contact relationship, chief complaint, medication identifiers,
clinical finding type, procedure indication, procedure result, referral, outcome
observation, and patient satisfaction. Pending this additional work, users can
select from available national or international coding systems, locally
developed codes, or descriptive text entries. Users also may introduce expanded
versions of codes specified in Release 1.0 data elements to meet local
needs for more detailed data. For example, users can expand the codes for
patient ethnicity by subdividing the two specified groups (Hispanic and
Not of Hispanic Origin) into more detailed sub-groups. Users must make
sure that subdivided codes can be combined into parent codes to avoid problems
with data aggregation and comparison.
Another factor that will influence how DEEDS is used is
the movement of many EDs to a paperless or nearly paperless patient record
system, albeit at a pace that differs from facility to facility. Data entry
technology is advancing rapidly, and the proportion of data entered by hand is
decreasing. Direct electronic transmission, telemetry, and increasingly
sophisticated dictation systems will become even more important factors in data
entry. As advances in information technology are introduced, the burden of
entering data will lessen, and the call for more timely, accurate, and useful ED
data will intensify.
Although computerization of ED records offers opportunities to
improve data collection, linkage, and exchange, it also presents challenges to
data security. The prospect of increasing the availability of ED data raises
concerns about the unauthorized acquisition of data. Protection of patient,
practitioner, and institutional confidentiality requires that persons
responsible for implementing or maintaining computer-based ED record systems
guard against unauthorized data access and disclosure (Office of Technology
Assessment, 1993).
Further work will be needed to revise DEEDS as a result
of field testing, new developments in health data standards, advances in
information technology, and changes in ED data needs. To assure that necessary
changes are incorporated in a timely manner, CDC plans to coordinate a
multidisciplinary review of DEEDS beginning 6 to 12 months after
distribution of the initial release. The partnership and process used to develop
DEEDS, Release 1.0 provides a valuable precedent for future review and
revision.
Please send questions or suggestions for improving DEEDS
to:
Daniel A. Pollock, MD
NCIPC (Mail Stop
F-41)
CDC
4770 Buford Highway NE
Atlanta, Georgia
30341-3724
Telephone: (770) 488-4031
Fax: (770) 488-4338
E-mail:
DAP1@CDC.GOV.S
