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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
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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.
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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
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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
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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.
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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.
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Representative terms from entire chapter:
cancer information
