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COMMENTS The growing need for information by health care providers about O-E medicine cannot be met by a single database, computer program, or compilation of printed materials. Much of the O-E health data in this field are "soft," frequently based on inferences from, or extrapolations of, toxicity information from animal mode' systems often acquires' by methods of varying reliability and questionable usefulness. The answers to many of the questions asked by health care providers often call for professional judgement. Although a number of computerized information sources exist that contain technical data, the synthesis of these data into a patient-specific assessment of risk or a recommendation for patient management will remain the province, for the foreseeable future, of human experts able to make professional judgements. And, as noted above, knowlecige of focal industry, geography, patterns of illness and legal requirements may critically influence the information needed in a given case. Thus, it is clear that communication links must be established broadly with existing database information resources. These links should be made with agencies at the state and federal level to encompass the breadth of knowledge needed to respond to questions of O-E relatecl illnesses, reporting requirements, and compliance with local laws pertaining to illnesses auribulable to hazardous substances. RECOMMENDATIONS Based on the findings of the subcommittee, the committee recommends that Congress authorize and 16
appropriate funds within a governmental agency to establish a two-component national O-E medical information system described in this report. The subcommittee believes that the best mode! for an O-E medical information "system" would be nationally co- ordinated, regional multi-disciplinary centers that would provide a widely publicized telephone-based information service for professional inquiries. The importance of local industrial' transportation, and geographic factors in assessing O-E hazardous exposures persuades the subcommittee that no single center could reasonably serve national needs, and that a network of regional centers is needed. 11 It is equally clear that a fully decentralized system of nformation centers would be inefficient and duplicative. Similarly, the need for national summary statistics on the incidence and prevalence of illnesses and injuries caused by O-E hazardous exposures would not be met solely by a network of regional centers. Therefore, a national center is envisioned that would be complementary to the regional units. The national center would: 1) Develop Requests For Proposal (RFPs) for the competitive award of regional center contracts or grants. Regions would be identified by needs, resources, population base and types of industry. Full national coverage would be an important program goat. 2) Administer contracts or grants Five year funding cycle) to run regional centers. 17
3) Build shared information resources (such as new specialized databases) in collaboration with other public organizations such as the National Library of Medicine and provide efficient communication linkages among the regional and national centers (such as electronic bulletin boards and electronic mad! facilities). 4) Establish standards for data dissemination to, and data collection from, regional centers. 5) Collect, monitor, and analyze data from regional centers to identify clusters and detect sentinel events (widespread but subtle toxic exposures recognized only by diagnosis of clusters of patients in a local area), define the needs for relevant national statistics, conduct epidemiological studies, identify opportunities for applied research, and issue periodic reports. These periodic reports should be made to state health agencies, NIOSH, OSHA, and perhaps other agencies depending on the circumstance of the sentinel evenness. 6) Provide a forum for regional centers to share their experiences and their expertise. 7) Conduct an ongoing program for assurance of performance, creditability, and quality. 8) Collaborate with national trade associations, industries, and state governments where appropriate, in sharing costs and cleveloping non- cluplicative services and information. 9) Work with professional organizations (such as The American College of Physicians, American 18
Academy of Family Physicians, American College of Occupational Medicine), to make sure that the system is wiclely known and used by physicians. Informal advisory groups composed of representatives from these related organizations should help guide the programs and services of the regional centers. Regional centers would: 1. Provide a 24-hour toxics information 800-number. Disseminate information of printed publications by either facsimile or electronic mail. 3. Develop region-specific information about procedures, laws, and policy. Provide referrals for additional information and assistance. 5. Collect clinical case data about local and regional exposure patterns. 6. Establish linkages with state public health agencies; state and local hazardous materials teams; National Institute for Occupational Safety and Health (NIOSH), Occupational Safety and Health Administration (OSHA), Centers for Disease Control (CDC), National Institute of Environmental Health Sciences (NIEHS), Agency for Toxic Substances and Disease Registry (ATSDR), and the Environmental Protection Agency (EPA) regional offices; industries; and health-related private organizations and associations. Also, establish informal advisory groups composed of representatives from these 19
related organizations that would help guide the programs and services of the regional centers. 7. Maintain a core, full-time staff to respond to telephone inquiries (Note: 24 hr. coverage would require 4-6 persons, however, the cost projections in Table A-1 show only 1.5 FTE for start-up year). B. Insure access to consultant expertise in O-E medicine, industrial hygiene, toxicology, epidemiology, risk assessment, and education. 9. Serve as an integral component of a first-alert system in the identification and characterization of acute toxic episodes, the toxicants, and relevant resource information and experts knowledgeable about the involved toxicants. Funding for regional centers would be awarded on a competitive basis to organizations possessing the relevant expertise. Some centers might be existing organizations (e.g., a- poison control center or occupational health clinic)-, while others might be brought together specifically to respond to a request for proposals. Once established, the regional centers should be actively promoted within the medical community. 20
