Things are beginning to change, however. Government regulation will be defining how data will be exchanged electronically between provider and payer. As in many industries, the Internet and Web technology are seen as enablers for the exchange of information. There has been significant growth in the application of telemedicine, which is defined by the American Telemedicine Association as “the use of medical information exchanged from one site to another via electronic communications for the health and education of the patient or health care provider and for the purpose of improving care.” A survey by the Association of Telemedicine Service Providers found that telemedicine consultations over two-way video links increased 300% in 1996 over the previous year. In 1997, according to the Center for Telemedicine Law, close to 200 bills related to telemedicine were introduced in state legislatures. Also, the National Library of Medicine is sponsoring telemedicine initiatives across the country, which is sure to encourage further growth.
Telemedicine requires robust telecommunication lines with sufficient bandwidth and sophisticated desktop systems or clinical workstations that can perform multi-tasking operations, but central to the success of telemedicine is the electronic medical record. Clinical information about a patient must be in electronic format to support the increasing need for electronic exchange of information. Not only will an electronic medical record facilitate the exchange of information, it is also seen as the foundation for other computerized applications that will improve the quality of patient care. Customized advice to patients can be given when patient records systems are integrated with point-of-care decision support systems that pull in electronic medical information from the more than two million journal articles available each year to medical professionals.
Clearly, the benefits of telemedicine -- improved access to health care, enhanced quality of care and cost control -- make it worthwhile to pursue and advance the exchange of electronic health care information. Issues such as start-up costs, legal roadblocks, privacy concerns and resistance to change must be addressed and resolved. In addition, adoption of standards is critical for expansion of telemedicine initiatives.
The U.S. Department of Health and Human Services (HHS) is driving the development of standards for administrative simplification, an aspect of the Health Insurance Portability and Accountability Act (HIPAA). The National Committee on Vital and Health Statistics (NCVHS) will be recommending standards for the exchange of medical information and will include existing standards when available. Health Level Seven’s focus in the past has been on medical informatics and messaging standards, but this is evolving to encompass other types of standards such as those related to object technology, image transfer and document markup. The Insurance Committee (N) within X12 has business transactions as its focus. HHS has adopted EDI standards from X12N for the exchange of data between providers and payers and will be determining the format for identifiers that all players in the health care arena will be required to use.
Much of the standards development activity to date has focused on standards for exchange of administrative and financial data. Clinical information exchange is not as straightforward. Current standards activity must address not only how to exchange coded or structured data, but also how to exchange full-text or narrative information and images. Certain organizations, such as the Institute of Electrical and Electronics Engineers (IEEE), are focused on telecommunication protocols to support exchange of data. The Object Management Group (OMG) is developing a Common Object Request Broker Architecture (CORBA) – middleware – specifically for the medical domain. ASTM is focusing on security issues and the format for medical records. The Digital Imaging and Communication in Medicine (DICOM) standard supports the exchange of clinical data, not just radiological images. Some of these activities are software solutions and some are highly structured definitions for documenting and transmitting information. Within the Health Level Seven (HL7) organization, the SGML Special Interest Group is looking at how the Standard Generalized Markup Language, an ISO standard, may be used to facilitate exchange of clinical information.
Unlike other standards, the Standard Generalized Markup Language (SGML) supports the document-centered approach to medical records. It is software and platform independent and, as an international standard, has global reach. SGML is a mechanism for defining the structure of a document and the meaning of its components. As a “meta-language,” SGML provides the methodology for encoding text and specifies the markup to be used through a Document Type Definition (DTD). Once the encoding rules for a document type have been defined, a parser can be used to process a document and to ensure all required components are included and in the correct order.
Document Type Definitions are usually developed within an industry, and work is underway within the HL7 SGML Special Interest Group to develop definitions for various medical record document types. This activity is part of the design work on a new, proposed SGML-based architecture called Kona.
The Kona proposal defines four levels of specificity for the exchange of medical record documents. Level 1, ProseDoc, uses minimal markup and allows exchange of imaged or unstructured documents among a wide community of users. Level 2, ClinicalContent, uses minimal markup of documents with loosely defined specifications for data requirements, considered detailed enough for the exchange of information among providers, payers and regulatory agencies. Level 3, EHR, uses the extensive markup and definitions required for full exchange of a patient’s records between providers. Level 4, Enterprise, uses very specific data definitions and markup such as might be found in an integrated delivery system. A higher level of specificity allows more detailed or accurate searching. Documents that are marked up with highly descriptive tags can be broken into components, allowing users to access the exact information they are seeking.
Current problems with Web search engines must be solved, however, before effective retrieval of medical records will be possible. Today’s search engines retrieve many documents that are not relevant to a query. Health care requires precision in the records retrieved, in terms of capturing specific documents for the right patient and for finding all of the records for a patient. Use of a Master Patient Index to register patient identifiers is one way to improve retrieval results. Another method for retrieval of documents across distributed systems may be the use of a standard retrieval protocol. The use of metadata also facilitates retrieval of information pertinent to a particular query.
The Dublin Core consists of 15 elements that describe a resource or document. It is designed to be extensible, meaning that it allows the use of descriptors or qualifiers. (For more on the Dublin Core, see “The Dublin Core: A Simple Content Description Model for Electronic Resources,” Bulletin of the American Society for Information Science, October/November 1997.) Within the group of Dublin Core designers, two views may be found. The minimalists advocate using only the basic Dublin Core in order to keep things simple both for metadata creators and for retrieval systems. The structuralists believe that more formalized data element qualifiers may better meet the needs of certain user communities.
Obviously, the medical community is a highly specialized community that should develop its own detailed metadata scheme. However, the semantics of the Dublin Core are “stable” and, because it “has achieved wide international recognition as the primary candidate for interdisciplinary resource description,” according to Weibel and Hakala, it is a good starting place for the development of medical record metadata. A basic metadata set for a medical record document might be developed as shown in Table 2.
The Kona proposal provides the framework for definition of common data elements in an electronic medical record that can be encoded with standard tags. Because XML tags define objects or parts of a document, they facilitate the transfer of component parts of a document to another computer system. This functionality supports the four levels of the Kona architecture. A recent article by Radosevich asserts that, “if the Kona proposal takes off, the portability of XML documents combined with the Web’s broad reach could be a boon to the health-care industry.”
Some virtual patient record applications use object-oriented technology to pull together information. Middleware such as CORBA provides access to non-standardized data in legacy systems, but software solutions do not allow true interoperability. On the other hand, XML uses tried-and-true Internet protocols and international standards to define and access tagged objects. Both methods can access information across wide area networks, but a software approach will not stand the test of time. Drafters of the Kona architecture, as supporters of the document-centered approach, believe that “regardless of how well conceived a relational or object-oriented schema, no one can foresee the questions and relationships that will take on significance over time.”
A growing trend is the use of document management systems in health care. The use of distributed systems allows retrieval of patient information directly from the source, rather than through a central repository. Historically, electronic document management systems have solved document management problems within an organization. Another new standard with application to XML documents, the Document Management Alliance (DMA) specification, “provides a rich set of capabilities” that includes “the ability to search across multiple repositories simultaneously, and merge the search results.”
To have true cross-repository interoperability, and to make the vision of a complete virtual patient record a possibility, organizations must move toward the use of standards that are all-encompassing and broad in scope. SGML and XML are standards that fit this description. XML-structured documents with metadata facilitate access to all clinical data for a patient. When combined with Internet protocols and Web browsers, SGML/XML is the enabler for retrieval of patient information across organizational and geographic boundaries. Internet protocols provide the standard methods for exchange of data and Web browsers pull together the information into an easy-to-use, graphical format. But it is the flexibility of SGML/XML that provides the power to this solution.
SGML applications such as XML are open standards solutions that help us progress to this next level. SGML is a future-oriented, open standard with a framework that allows detailed definitions by user communities. The future of the Web includes use of XML. These standards work in conjunction with other global standards – Internet protocols for communication and exchange of data, along with common Web browsers and search engines for finding and presenting information. Marked-up documents stored on Web-accessible servers are poised for use by multiple communities, today and tomorrow.
Document Management Alliance
DC-5: The Helsinki Metadata Workshop
Healthcare Quality Commission
Health Level 7 SGML SIG
|Health Level Seven (HL7)
|Health Level Seven Standard Version 2.3, Application Protocol for Electronic Data Exhange|
|Institute of Electrical and Electronics Engineers (IEEE)
|P1073.3.1-1994, IEEE Standard for MEdical Device Communications - Transport Profile - Connetion Mode (MIB)
P1157, Standard for Healthcare Data Iterchange (MEDIX)
|Data Interchange Standards Association (DISA)
|Electronic Data Interchange (EDI), message format standards
X12N - Insurance; eligibility and claim applications
|American College of Radiology/National Electrical Manufcturers' Association (ACR/NEMA)
|PS 3.1-3.13, Digital Imaging and COmmunicatins in Medicine (DICOM), radiology applications|
|National Council for Prescription Drug Programs (NCPDP)
|Telecommunication Standard Format Version 3.2; transmission of drug claims|
|E31.11, Electronic Health Record Portability
E31.12, Standards for Electronic Patient Records
|Healthcare Informatics Standards Board (HISB)
|Joint Working Groups for voluntary coordination among U.S. standards developing organizations|
|National Committee on VItal Health Statistics (NCVHS) aspe.os.dhhs.gov/ncvhs/||Public advisory body to HHS charged with recommending standards for medical record information and its electronic exhange (HIPAA)|
|Object Management Group (OMG)
|Software consortium creating standards for data interchange, CORBAMed|
|Medical Record Metadata||Dublin Core Equivalent|
|Provider of Service
||Author or Creator
|Patient Identification Number
Discharge Diagnosis Code
|Subject and Keywords|
|Discharge Diagnosis||Description (textual)|
|Provider Organizatin (billing entity)
|Location of Services (used when a professional renders services at a facility)||Other Contributor|
|Date(s) of Service
||Date (range of dates)|
|Category of Document
|Resource Identifier (could be combination of Patient ID, Provider ID and Date)||Resource Identifier|
|Medical Record Number (local)||Source|
|Collection (e.g., medical record for patient x)||Relation (to other resources)|
|may not be applicable||Coverage (spatial and temporal)|
|Security/Access Terms||Rights Management|
Gloria Shobowale is vice president, Statewide Operations, for Blue Cross Blue Shield of Texas' HMO product. She can be reached by phone at 972/766-8828 or by e-mail Gloria_Shobowale@bcbstx.com. Her paper on health care information standards was written as part of an independent study project at the University of North Texas where she is a student. Special thanks go from Gloria to Sam Hastings, faculty advisor for the project.
Bulletin of the American Society for Information Science