The vision of linkages between users of patient information within communities in which each health care facility and practitioner would connect to a network through an information system is greatly hindered by the inability to create, store, retrieve, transmit, and manipulate patients' health data in ways that best support decision making about their care. This is the problem that is addressed in this white paper. It is hoped that the approach presented here for information classification and retrieval through the NII will lead to further investigation of its potential.
Several efforts are already under way to promote the widespread use of advanced telecommunications and information technologies in the public and nonprofit sectors, especially at the community level. (See, for example, the U.S. Department of Commerce National Telecommunications Information Administration/TIIAP initiatives.) The private sector is also beginning to explore the use of information technology in community networks, including those designed to support and enhance collaboration among health and human services providers (Greene, 1995). Eventually, a system of "global, shared care" is expected to evolve in which the coordinated activities of different people from different institutions will apply different methods in different time frames, all in a combined effort to aid patients medically, psychologically, and socially in the most beneficial ways. Because the ability to move data is considered fundamental to the process of integrated care, attempts have been made to find cost-effective ways to share data among the participants. However, this approach has been fraught with difficulties that are largely unrelated to the ability of the technology to provide solutions. Questions of ownership, confidentiality, responsibility for health outcomes, and semantics are paramount, and clinicians are themselves calling for new solutions that do not require "knowledge" to be formalized, structured, and put into coding schemes (Malmberg, 1993).
Many Europeans have also recognized that one of the major problems in designing the shared care system is management of the communications process among the different institutions and health care professionals. They are taking a different approach and conducting field studies to evaluate the feasibility of using patient-owned, complete medical record cards, which patients would carry with them and present to the institution carrying out the treatment. Although they reconize the importance of natural language processing and the potential of optical-storage technology to reduce costs, they conclude that the technology will only be available within the respective information systems that contain medical records and that new solutions such as the chip card of the hybrid card must be found in order to extend communication to all health care providers (Ellsasser et al., 1995).
Information sources accessed through the NII also represent components of emerging universally accessible, digital libraries. The National Science Foundation, in a joint initiative with the Advanced Research Projects Agency and the National Aeronautics and Space Administration, is supporting research and development designed to explore the full benefits of these libraries, focusing on achieving en economically feasible capability to both digitize existing and new information from heterogeneous and distributed sources of information and to find ways to store, search, process, and retrieve this information in a user-friendly way (National Science Foundation, 1994). It has been suggested, however, that "for digital libraries to succeed, we must abandon the traditional notion of 'library' altogether.… The digital library will be a collection of information services; producers of material will make it available, and consumers will find and use it" (Wilensky, 1995). New research is needed