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A Findings Model for an Ambulatory Pediatric Record

Essential Data, Relational Modeling, and Vocabulary Considerations
Richard N. Shiffman, M.D., M.C.I.S.
Center for Medical Informatics and the Department of Pediatrics
Yale School of Medicine, New Haven, Connecticut

Effective, computer-based representation of Clinical Environment
clinical observations requires balancing the advantages The Department of Pediatrics at the Yale School
of structured, coded descriptions against those offree of Medicine has established a center for the care of
text narrative. An essential data set of relevant signs Children with Special Health Care Needs (CSHCN).
and symptoms was defined by a multidisciplinary It provides diagnostic and therapeutic services to
group based on management goals published in a pediatric patients who have a broad range of disabling
national guideline to meet the needs of clinicians in conditions, including spina bifida, cerebral palsy,
the Spina Bifida Clinic at Yale-New Haven Hospital. congenital and acquired heart disease, cleft lip and/or
These core data elements are stored in a structured palate, rheumatoid arthritis, and cystic fibrosis. A
format. Additional material is stored as free text. replicable and extensible information architecture was
A relational schema was devised that permits needed to manage the clinical, research, and
storage of both coded findings and narrative. administrative data generated in caring for children
Symptoms and signs are represented as subtypes of a with these chronic diseases. A prototype clinical
supertype patient finding entity; they inherit common information system has been developed using
attributes and specialize others. Microsoft Access Version 2.0 (Microsoft Corp.,
The IVORY vocabulary was supplemented and Redmond, Wash.) with a plan to migrate to a client-
modified to provide terms that describe relevant server architecture.
clinical observations. For this application, fields were Initially, the system is being implemented in the
added that enable predictive data entry of findings Spina Bifida Clinic at Yale-New Haven Hospital.
based on patient age and gender. Comprehensive care of children who have spina
bifida-a congenital disorder that results from
INTRODUCTION abnormal intrauterine development of the central
nervous system and spine-requires coordination of
A major challenge that faces the designers of a multiple disciplines, including neurosurgery,
computer-based medical record is to effectively orthopedics, urology, pediatrics, nursing, social
represent the clinical data that are captured during a services, physical and occupational therapy, orthotics,
health care encounter. Free-text narrative, the and genetic counseling. The clinical information
conventional representation in the paper-based record, requirements in this clinic are therefore quite
is flexible, expressive and familiar to clinicians [1]. extensive and should be representative of the needs of
With current technology, however, computers are able other ambulatory care environments.
to make only limited use of information stored in a
free-text format [2]. On the other hand, coded data- CORE DATA SET
precisely defined and based on controlled
vocabularies-can be used to organize the medical Several initiatives in the United States and
record for efficient search, retrieval, and display, to Europe have focused on the specification of basic
aggregate data for research and administrative information to support clinical services. For the
functions, and to trigger decision support. However, ambulatory setting, the Uniform Ambulatory Care
coded data may be insufficiently expressive and Data Set defines a common core of data items and
structured data entry may be unwieldy. provides standard definitions [3]. Likewise, the
This paper describes an approach that was applied Advanced Information in Medicine Program of the
to balance these representations in a computer-based European Economic Community has defined
ambulatory record. A core data set was prospectively minimum data sets to characterize clinical
identified that is maintained in coded format to meet information requirements and constraints and to
the needs of clinicians, followed by those of enhance uniformity [4]. Both are predicated on an
researchers and administrators. Additional information assumption that there is a core of data common to the
is maintained in free-text format. We describe the needs of multiple users that should have a priority for
process for choosing the core data sets, the standardization. However, neither of these multi-
development of a relational architecture for storage of purpose data sets is sufficiently detailed to adequately
these data, and the selection of a controlled vocabulary describe the findings observed during a clinical
for representation of the core data. encounter.

0195-4210/95/$5.00 C) 1995 AMIA, Inc. 411

This definition was applied to prospectively the representation of medical concepts related to define data relevant to clinical management and radiography [11] and their publications have outcomes assessment for the CSHCN program.g. and pediatrics identified 17 Standard ASTM E1384-91 identifies the essential symptoms and 22 signs that are directly relevant to content and logical structure of an electronic primary the above-mentioned clinic goals. and Clinical management pertinent to these goals requires users. it is based on an infancy through adolescence focus on 3 major goals: understanding of how the information is used without * maintenance of normal intracranial pressure consideration of specific processing patterns. In this work. Halle was applied to the logical design of a findings maximize the potential to participate in society. A skeletal user view is Comparatively little attention has been paid to created to define and model the major relevant data data management for the most fundamental objects-initially without supportive detail. The American Society of Testing and Materials neurosurgery. methodology systematically analyzes and graphically and discipline-specific recommendations to health care models information requirements and translates the providers. However. developers. complex. and the FINDINGs estimated that these findings lead to a diagnosis in themselves. and are available in clinical reports. an patient and reported by the patient or a surrogate area of increasing concern in the current managed care historian. Additional findings data that are collected components that define clinical observations during during clinical encounters can be captured as free text encounters are minimal. Symptoms tests and imaging procedures [10]. His use of a serve as a basis for decision support [7]. Findings data are represent phenomena experienced subjectively by the also essential to characterize clinical outcomes. suggest that an essential data set be aggregated or used for record organization. SYMPTOMs and SIGNs are subtypes of 90% of cases. RELATIONAL DESIGN making. This foster independence [9]. Signs are objectively observed by environment. and regular consideration and documentation of a flexible database. The guidelines provide age. of symptom and sign data. sponsoring organization. attention is focused on modeling examination observations. but they cannot Moidu et al. e. these publications are only indirectly knowledge resource. The For example. It was agreed that health record [5]. The data elements included are these data elements would be coded in a structured extremely broad-based and appear comprehensive. should include "just as many data elements as required to provide the essential foundation for decision. prevent secondary disabilities. and endoscopy Well-crafted guidelines represent a valuable [15]. Such information can be Recently. Clear. [and] to monitor and evaluate the impact of the care provided" The Canon group has focused collaboratively on [6]. the development of knowledge-based systems and can polyhierarchical representation [16].e.. clinicians. representatives from 412 . The end-result is a consistent. which are intended to maintain The approach described by Fleming and von optimal health status.. Bifida Clinic database. ENCOUNTERs. Each of these subtype instances represents For the neurosurgical component of the Spina the same "object" in the real world as the supertype. [12. i. The Spina Bifida Association of America has published guidelines for the management of patients Structured Coding of Findings Data with spina bifida. significant number of historical findings and In this report. in the clinical history and physical examination. but manner. without requiring the expense and the supertype entity FINDING (as are LAB discomfort associated with supplemental laboratory RESULTs and IMAGING RESULTs). single table to store symptoms. the Neurosurgical guidelines from procedure is data-driven. It is PROVIDERs. and model for the Spina Bifida Clinic database [17]. multi- reused to define an essential data set for an ambulatory table design but manipulation of the data is more patient record [8]. and knowledge from a published practice guideline was relationships is simpler than a conventional. modifiers. * recognition of presence of the Chiari malformation graphical diagrams are produced that facilitate * recognition of evidence of cord-tethering symptoms communication among designers. 13]. Other efforts to model clinical observations have dealt with Use of Guidelines to Define Core Data the realms of laboratory medicine [14]. They provide up-to-date applicable to pragmatic issues of database design for information that has been sanctioned by the symptom and sign identify the need for care. concentrated on that domain. model into a stable relational implementation. sharable. Dolin has presented a high-level used to break the knowledge acquisition bottleneck for conceptual model of symptoms that uses a nested. nursing. . The observations made by clinicians-information elicited entities of interest in this model include PATIENTs.

General. Encounter Figure 1. e.. etc. * EnteredBy. Logical model of findings for the Spina Bifida Clinic database. although the converse need not include: be true. smaller typically described by a type of service and a site of than. and Date.g. for common to all occurrences of the supertype. Rector's example of angina one-to-many with both ENCOUNTER and a evoked by walking past the frozen food counter. SYMPTOMs. The next step in the creation of the logical model * Absent: this Boolean attribute allows expression of is to add non-key attributes to each entity (Figure 1). following normalization principles.. negation Fleming and von Halle recommend that non-key * Certainty: this attribute expresses various levels of attributes be placed as high as possible in the logical certainty. ENCOUNTERs and FINDINGs description to capture the richness of the clinical are related many-to-many. of another finding with which the current finding is Non-key attributes for PATIENT and compared PROVIDER entities are implementation specific and * Comparison operator: the relationship of the current beyond the scope of this paper. possible. SIGNs. a unique numeric identifier. patients may report key. TimeStamp: The identifier of the user time (an alternate. 413 . * Finding ID: a pointer to the clinical vocabulary term Relationships link these major entities. e. patient ID. there exists exactly one non-key attributes that are pertinent to all findings instance of FINDING. each instance of the subtype. list (see below) PATIENTs and PROVIDERs are linked one-to-many * Comment: this attribute permits free-text to ENCOUNTERs. composite key).. or FINDING list. probable. and. service. The context field identifies the specific supertype FINDING entity. elicited by the examiner in response to deep or Each instance of these entities is defined by a superficial palpation. and IMAGING RESULTs represent data item. e. This text field can be used to modify entity (PATIENT_FINDING) is defined that relates specific findings. The primary key of wheezing or clinicians may detect it on auscultation each subtype entity is the same as that of the of the chest. ENCOUNTERs are finding to the comparison finding. each associated 1:1 with the SYMPTOM reported by the patient and as a SIGN supertype. Likewise. mutually exclusive categories of * Context: abdominal pain may occur both as a PATIENT_FINDING.g. P=. LAB it can store narrative not associated with any coded RESULTs. an associative encounter. each subtype instance has all the properties of the Non-key attributes for the FINDING entity are supertype plus some additional properties. >=.75 model. milder than.g. and the time the finding is recorded. source of the finding. Therefore. as well as provider ID. each must * Comparison with: this attribute stores the identifier be fully determined by the entire primary key.

right _Severity bilateral |Location[) is|FindnglD * Quality: e.. matted. On the * Measured values other hand. caloric stimulation * U Cl'linical Ybcabulary * Relieved by: e. originally derived from the Wisconsin vocabulary lacks terms for 22 and has marginal Ambulatory Research Project. caution that the use of a limited progress note tool [19]. Both SYMPTOMs and SIGNs are modified by: symptoms of increased intracranial pressure in infancy * Intensity. e. severity. This necessitated adding attributes to the continues vocabulary terms (Figure 2). Tables are created to represent each entity. chest pain can radiate to the left arm QuIkylD FindngiD and the left jaw QudlyName QuakylD * Elicited by: e. The fact that the finding redefinition of columns and tables. i.. attributes are classified as child entities: * Location: a modifier may be necessary when the finding does not connote location. accelerating head THE SIGN entity adds specializations for: circumference growth rate and sunset sign. 1 year ago signs relevant to a given patient's age group and * Duration: the length of time a SYMPTOM gender. Of the 43 has been lacking. Indexing.g. Ortolani's maneuver. a topographic modifier..g. and aggravating factors. These are pertinent only when the patient is female. the (Units). * U bowel movement. Many of the modifiers match symptoms and signs is the fact that symptoms are attributes in the relational model described here.. Relational structure of the modified The logical model depicted in Figure 1 can be controlled vocabulary.g. constant. the symptoms and signs that indicate * Trend: unchanging. Additionally. indolent. include a full anterior fontanel. was modified by semantic matches for another 2. blurred vision. "There are VOCABULARY no existing controlled vocabularies that can be Encoding data related to symptoms and signs has recommended without reservation for even selected been challenging because the concepts are often elements of the automated patient record" [21] The IVORY vocabulary lacks many of the terms necessary complex and a comprehensive controlled vocabulary for the Spina Bifida Clinic application. This neurosurgical component of the database.. readily transformed into a relational implementation.g. 1 flight of steps.g. worsening the outcomes of interest change. abrupt. above attributes from the FINDING entity and adds Findings terms are linked by associative tables to specialized attributes.g.. the IVORY vocabulary.g. left. a rash may ModHifers Associative Tables be present on the right arm and left leg. older children may complain of headaches * Units and suffer from memory disturbance. fontanel closes. denormalization. 120 (Measured value) millimeters of mercury and decreased school performance. Grade include irritability. A identifiers for 966 findings terms and a large number facility is included in the database that allows the of modifier terms grouped by categories such as 414 . Signs II/VI.g.. The described by temporal modifiers. * Onset: e.. coarse |Location Name | LocalorlD ! * Radiation: e. lethargy. sitting up. copious. disabling. predictive data entry "forms" * Past history: references previous episodes of a were designed to display only the symptoms and SYMPTOM. seasonal development. improving. Columns Such restrictions are easily added as fields to the in these tables represent each attribute. Campbell and Musen for use in their IVORY Moorman et al. rare. OTC analgesics.e. Similarly. The SYMPTOM subentity inherits all of the location. A primary difference between relevant modifiers. 2 weeks For this application. We modified the IVORY terms required to encode core data for the vocabulary for use in this application [18]. e.g. moderate.g. Figure 2. head circumference does not change in Some SYMPTOM and SIGN attributes are response to acute pressure changes. and vomiting. gynecologic terms several modifier values simultaneously. For instance.. and papilledema is multi-valued. set of modifiers prohibits domain completeness and The IVORY vocabulary includes unique results in a limited descriptive level of detail [20].. e. SevertylD Severky Nanie | FindingiD * Laterality.. papular.g. meals. identifier carries no contextual information (as it does and other "tuning" procedures may then be performed in hierarchical classification systems such as ICD-9- to meet performance requirements. a given FINDING may take on more easily ascertained. As noted by Lindberg and Humphreys. deep * U palpation. e. e. CM and SNOMED) facilitates addition of new terms. With human growth and * Frequency: e. frequency. one day.. red. IVORY findings vocabulary. These attributes expressiveness of this vocabulary makes it a include: reasonable choice for basic terminology.

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