Standardization of Data Formats

14.2.1.1 Types of Health Care Data

Medical Data

Patient Data Administrative

Data

Data in Health Care

Figure 18: Data Types in Health Care.

Before standards of data formats are discussed, a general overview is given about the main data types in health care. The distinction should allow a correct classification of health care data. The figure above illustrates the fundamental types of health care data and systems.

The first ones are the administrative systems. Administrative systems are the most advanced in health care . No surprise, since here is where the data is stored for the man-agement of the ‘cash input’ such as payment catalogues, insurance regulations and forms, as well as structured data for controlling purposes. The second is the patients data. This is data, as the term is already showing , which is closely related to the patient, like the

patient’s address, admission and release date, payment data (like insurance of patient), age, sex, etc. The third is medical data. This is case-related, examination-related, diagnosis-related, and physician-related data, for example the medical history of a patient, the entrance diagnosis, physical symptoms, laboratory test data, data about diagnostic and therapeutic procedures and results, drug reactions, outcome - in other words, all data which is needed for proper documentation of the treatment process of a case [Shore, 1994].

Whereas administrative and patient data is mainly in textual form, medical data contain

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audio and image data too [Wyman, 1994]. (Rough overview of data fields see appendix II, tables 1 and 2). Most data in telepathology is medical data, in the form of textual data, images, voice, as well as information to control remote equipment. However administrative data and patient data is also necessary for documentation and billing.

There is a data flow between the different data types and storage. For example, the admin-istrative system needs the patient’s admission data and medical treatment data to perform the billing. Or the medical system needs the patient data, to create a medical record, in which all medical data of a patient are stored. Unfortunately such data exchanges are often executed in ‘paper’ form, since the data formats and the participating computer systems are often not compatible. The need for standardization and fast, smooth data exchanges be-comes obvious [Wray, 1995, p. 274; Martin, 1996, p. 458]. This was also mentioned in this study; several participants claimed this integration of different sources and applications for the creation of satisfying work conditions.

14.2.1.2 Standardization of Medical Records

Patient information, pathological procedures, results and images have to be carefully documented in a file - the medical record. These data are necessary for the patient’s case tracking, for legal purposes as well as for scientific research findings. Altogether patho-logical data has to be seen in the context of the whole medical history of a patient and as an information source of a comprehensive medical record system. The meaning of medical records for telemedicine - equivalent telepathology - has been described in the chapter about telepathology service introduction (see chapters 4.3.7 and 14.2.1). To summarize, the medical record is the backbone of each telepathology system.

In Europe the development and acceptance of data and medical record standards is less progressed than it is the case in North America. That is why US-standards are often adopted or are taken as a guideline for the Europe standard developments. For example, member countries of the European Committee for Standardization (CEN) have agreed that compatibility with standards specified by the USA Technical Committee addressing medi-cal informatics (CT 251) is a criteria to be used in purchasing medimedi-cal systems and equip-ment. These developments are comparable to the introduction activities of electronic medi-cal records in Europe.

Since the US-standards have a huge influence in medical system’s compatibility, the activities in the USA are described in more detail.

History of Medical Record’s Standardization in the USA

In 1991 the Institute of Medicine created an organization - the Computer-Based Patient Record Institute, Inc. (CPRI) - to advance the development and implementation of a com-puter-based patient record. This Organization was set up to solve specific issues, which are problematically for medical record development and management. It also articulates visions of how computer-based patient records could advance information management in health care. In April 1993 the CPRI published a paper⁷⁸, where four elementary process categories

78 Computer-Based Patient Record Institute, Inc., position paper: Computer-based patient record standards; American Health Information Management Association, Chicago, 1993. It describes four elementary categories: first, uniquely identify patients, providers, care sites, and payers; second, specify the patient record content and structure (outline of contents); third, code the content of the record (vocabulary), and fourth, transfer data between computers and across networks (message structure).

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were named, and specific standards for each of them were recommended. The recommen-dations of this report were adopted by the American Medical Informatics Association⁷⁹ (AMIA). In summary, both, the CPRI and the AMIA recommend the use of the consensus standard E1384 for the specification of the content and structure of patient records.

Parallel to the activities of the CPRI, in November 1991, the Secretary of Health and Human Services and the American Hospital Association also set up a ‘Work Group on the Computerization of Patient Records’, which had the task to define the vision of the computer-based patient record, and to identify practical steps and strategies for the devel-opment and implementation of such a record. Two years later this group published a report⁸⁰, in which the most important tasks for the implementation of computer-based patient records were described [Houtchens, 1995, p. 98].

Embedded in these frames, several institutions became active in designing a standardized computer-based patient record system. The activities of Pacific Bell Health Care Market Group (USA), of the independent Health Care International Medical Center (HCI) in Clydebank, Scotland, and the Rudolf Virchow University Berlin (Germany, project BERMED), were already introduced.

Unique Identifiers and Standardized Vocabulary

Unique identifiers are codes, which help to clearly identify important parameters of the health care delivery system. The reason for doing so was that the concurrent use of several independent coding systems, and differences in descriptive and diagnostic languages pres??ent opportunity for misinterpretation and misunderstanding and make it difficult for users to link information from different patient record systems.

Unique identifiers are for example the Universal Physician Identifier Number, set up by the Health Care Financing Administration (USA), or the ‘prescribers’ codes, developed by the National Council of Prescription Drug Programs in collaboration with the American Medical Association. In 1993, the National Library of Medicine developed a Unified Medical

Language System (UMLS) - the so called ‘Meta-thesaurus’ - in order to eliminate problems created by the existence of multiple vocabularies and coding systems. Altogether this meta-thesaurus included 152.444 concepts and 311.046 terms from 15 different vocabularies [Houtchens, 1995, p. 106]. Another important world-wide accepted code system for diagnoses and therapy is the ICD-9, the International Classification of Diseases or the ICPM, the International Classification of Procedures in Medicine [Hufnagl, 1999, p. 95]. In France an anatomical diagnostic thesaurus is tested, the so called ADICAP common

language coding system, which has the objective to standardize procedures and medical diagnoses in hematological cytology [Flandrin, 1995, p. 258; Flandrin, 1997/(1), pp. 97-104;

Flandrin, 1997/(2), pp. 104-109; Klossa, 1998, pp. 207 ff.; Diebold, 2000; Hemet, 2000].

79 Board of Directors of the American Medical Informatics Association. Position paper; Standards for medical identifiers, codes, and messages needed to create an efficient computer-stored medical record, J.Am.Med.Informatics Assoc., 1(1):1-7; 1994

80 Report of the Work Group on Computerization of Patient Records. Toward a National Health Information Infrastructure, Department of Health and Human Services, Washington DC, April 1993. In an overview, the three basic task were: first, improve the knowledge about the state-of-the-art; second, promote standards for documenting and sharing patient information; third, promote development of computer-based information system networks. For all these tasks information about the lead organization, a time frame and an estimated cost frame was included in the report

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For the field of pathology, as early as 1965, SNOP, the Systematic Nomenclature of Pathology, was developed by the College’s Committee on Nomenclature and Classification of Disease. It systematically describes the symptoms and findings in pathology. In 1974 SNOP was extended beyond the scope of pathology and evolved into SNOMED⁸¹, the Systematized Nomenclature of Medicine. SNOMED contains a broad array of clinical terms crossing all specialties of medicine. It was endorsed by the American Society of Clinical Pathologists (CAP) and very soon by most of the international pathological organizations, too. In 1993 the CAP and the National Library of Medicine structured a relationship incorporating SNOMED into the Unified Medical Language System to facilitate the transfer, integration, and retrieval of biomedical information from different sources. In 1996 a subset of SNOMED micro-glossary terms was adopted in the DICOM standard by the American College of Radiology and the National Equipment Manufacturers Association. In 1997 SNOMED and LOINC (Logical Observation Identification, Names and Codes) collaborate on the cross mapping of clinical reference terminology, so that now the detailed names of laboratory tests provided by LOINC will be mapped to more atomic SNOMED procedure terms. In 1997 around 32.000 terms of SNOMED were mapped to the ICD-9-CM to facilitate health reporting and statistical analysis, providing one point of reference for the coding of disease categories and billings. In 1998 the CAP started to integrate the work of the Kaiser Permanent Convergent Medical Terminology (CMT) into SNOMED and created SNOMED Reference Terminology (SNOMED-RT).

Figure 19: Example of integrated SNOMED-terminology – screen shot of the telepathology system in Basel/CH.

In the meantime SNOMED became a nationally recognized leader in clinical terminology in the USA, and achieved acceptance in most of the health care communities world-wide.

Since it includes the most comprehensive standardized language of health, it is a backbone for the integration of computerized patient records. It helps to reach a level of language commonality, avoids misinterpretation, increases diagnosis productivity, and provides guidelines to build-up an efficient database for epidemiology and statistical studies.

Currently it contains 13.165 records of topography, a functional anatomy for human and veterinary medicine; 5.898 records for morphology, terms used to name and describe structural changes in disease and abnormal development; 41.494 records for

diseases/diagnoses, a classification of the recognized clinical conditions encountered in human and veterinary medicine; and 30.796 records for the classification of health care procedures. A list of further codes (e.g. ADICAP, RESINTEL, see appendix II). All these efforts for standardization are vital for the creation of international telemedicine networks.

The improvement of disease standardization will make diagnoses internationally more consistent, accurate and comprehensive [Eide, 1994, p. 888].

81 http://www.snomed.org

SNOMED: Morphology SNOMED: Topography

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Considering the developments in the design of standardized medical records (see appen-dix II) and the usage of unified coding systems, patient records still differ widely in form and availability, offer varying degrees of quality, and many of them still do not meet the current information needs of health care professionals [Detmer, 1994]. This inadequacies of current patient records (both paper and electronic) and the non-observance of standards lead to a delay in the information system integration process, and to a delay in efficient conversion of care reforms. That is why decision-makers, health care system developers, as well as users must understand that the standardized patient record and codes are vital to improve the effectiveness and efficiency of clinical processes and procedures and that stan-dards are the basis for a satisfying integration process.