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cased to requesters are necessary, in part, as immunity from litigation. Accurate record keeping would also provide important data on the sentinel health events and illness trends associated with hazardous substance exposures that would be useful to health researchers and public policymakers. Liability is a concern for current and proposed information systems, especially when interpretations or judgements are required about information. It is expected that O-E medical information services would be held to a high "standard of care" (the tort law concept for importance of quality in a product or service), including a rigorous quality assurance process. This is a noteworthy objective, since much of the data are "soft" (extrapolated from animal data when human data are not available) and frequently insufficient. Existing limitations must be clearly stated to physicians because their expectations for the information system might be unrealistic. The design of the system should allow for the use of computers by physicians to access specialized databases containing health information. In the future, health professionals might be able to directly query an O-E medical information system. DISCUSSION OF EXISTING INFORMATION SYSTEMS The subcommittee reviewed and discussed a number of the major existing national medical information resources to consider whether any of them met the criteria for the national system outlined above. The two entities with operation characteristics similar to the O-E system 10
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proposed were the poison control centers (PCCs) and the network of cancer information service centers (CIS). In addition, there are O-E medical information types of programs in some states. However, the subcommittee did not attempt to consider all existing state programs. A brief description of the progressive programs from New Jersey, Iowa and California (San Francisco Bay Area Regional Poison Control Centers, Toxic Information Center (TIC), and the Hazard Evaluation System and Information Services (HESIS)), are given in the Appendix. Poison Control Centers The PCCs were developed in 1952 to provide information for treating childhood poisonings. There are approximately 125 such centers nationwide, with most providing information about how to manage the acute toxic effects of publicly available chemicals and compounds. PCC information services are generally available both to health care professionals and to the public. The formation of the American Association of Poison Control Centers led to the creation of standards for accreditation of centers and personnel2 and a national data collection system.3 Though most PCCs are sponsored and staffed by hospitals, there is a network of regional PCCs. These regional centers generally have larger staffs with more extensive training and experience, larger cat' volumes,4 and provide more consistent and comprehensive information than local PCCs.s Some PCCs, including those in Cincinnati6, San Francisco7, Pittsburgh8, and Minneapolis9 have developed occupational and environmental health information services. 11
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Some Strengths of the PCCs as a Mode! 1) PCCs are widely publicized, are well recognized among physicians and the public, and are available via telephone. Ninety percent of the people in a recent survey knew about PCCs~° and over half of the public can gain access to PCC information via a focal phone call. 2) The skills needed to respond to inquiries about O-E health problems overlap with those needed to address inquiries about acute toxicity. PCCs could therefore provide a source of already trained staff notably in pharmacology and toxicology. 3) The methods of gaining access to and responding to inquiries in the proposed O-E system (e.g., phone requests and responses, printed information distributed by mad' and facsimile) are identical to those used by PCCs. 4) The wide distribution of PCCs allows them to provide information that takes into account factors such as local industry, state and local laws, and local health care resources, an important quality for the proposed system. 5) PCCs already operate a data collection network for poisonings that could adapt or be adapted to provide national surveillance for O-E health risks. In fact, surveillance for occupational risks is already underway at some regional PCCs.~7 12
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Some Recognized Needs of the Poison Control Centers to Fulfill the Requirements of the O-E Information Mode! 1) Most PCCs are staffed by nurses, pharmacists, and non-professional staff under the supervision of a physician. Accommodating the broader and more complex issues of O-E medicine would require additional staff' including appropriately trained physicians, toxicologists, clinical pharmacologists, industrial hygienists, and epidemiologists.72 Specialized protocols for responding to inquiries about O-E health makers would be needed.~3 2) Most PCCs do not generate revenue for their supporting organizations. In the current era of cost containment, PCCs are an "endangered species," whose numbers are expected to decrease in coming years. In the face of fiscal constraints, few centers have sufficient resources to expand their services. 3) Although some PCCs are accredited and share data through organizations such as the American Association of Poison Control Centers, there is no uniform administrative or managerial framework for coordinating PCC activities nationally. Cancer Information Service Cancer is a major public health problem in the U.S. Each year, over 900,000 new cases are diagnosecl and over 400,000 deaths occur. The need for timely and accurate public and professional information about cancer 13
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is great, especially since cancer encompasses nearly 200 different diseases, each of which is managed differently. Cancer is a much-feared disease, for which there is conflicting and sometimes incorrect information in public media. The National Cancer Institute (NCI) (part of the National Institutes of Health) recognized the need for specialized cancer information services and in 1975 began developing a network of regional Cancer Information Centers. A comprehensive review of the history, structure, and function of the national Cancer Information Service (CIS) has been published recently.~4 CIS is a network of 25 regional centers that provide cancer prevention, diagnosis, and treatment information to health professionals and the public through a tog-free 800- number, 1-800-4-CANCER. The service is available to about 85 percent of the U.S. population and has been heavily promoted to the public through the news media. Private sector collaboration, such as the publication of the 800 number on the back of certain cereal boxes, has been actively sought and used. The centers respond to over 400,000 calls per year. The centers are administered by NCI, which provides overall program guidance and awards competitive contracts to establish CIS centers. As part of this guiclance, NC! prepares fact sheets, pamphlets, and a Standarc! Response Book/e! containing answers to frequently-asked questions and sends weekly mailings to each CiS Center with relevant printed materials, articles from the popular press, and reprints of research papers. Information is supplemented by resources assembled by each of the regionally located centers, including lists of organizations, persons, and programs involved in cancer care within the regions. 14
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NCl's specialized cancer treatment database, Physician Data Query (PDQJ, is available through CIS and provides specific treatment guidelines for all major types of cancer, listings of active cancer research protocols, and a national directory of physicians and organizations involved in cancer treatment. The PDQ system is updated monthly by an editorial board of recognized experts in cancer treatment. Cancer information is provided in two forms: simplified summary statements intended for use by the public; and technical data for physicians.7S Patients may receive printouts from PDQ through CIS, but are instructed to have the information interpreted for them by a physician. The system has user-friendly menus, but was designed originally for use only by physicians. However, CIS centers have become the largest users of PDQ. To insure that inquiries to CiS centers are dealt with accurately and appropriately, NCt conducts an ongoing CIS quality control program. When problems are encountered, the national office takes corrective action, up to and including the redirection of 800-number inquiries away from a particular center pending resolution of the problems. On occasion, CIS centers have provided O-E health information, such as a recent response protocol and printed materials regarding the cancer risk associated with asbestos in the home and workplace. The subcommittee consiclered the CtS for its organizational and procedural qualities, and not as a direct candidate for the proposed national O-E medical information system. 15
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