444
HUMPHREYS, Electronic Record Meets Digital Library
JAMIA
The Practice of Informatics
Viewpoint 䡲
Electronic Health Record
Meets Digital Library:
A New Environment for Achieving
an Old Goal
BETSY L. HUMPHREYS, MLS
A b s t r a c t Linking the electronic health record to the digital library is a Web-era
reformulation of the long-standing informatics goal of seamless integration of automated clinical
data and relevant knowledge-based information to support informed decisions. The spread of the
Internet, the development of the World Wide Web, and converging format standards for
electronic health data and digital publications make effective linking increasingly feasible. Some
existing systems link electronic health data and knowledge-based information in limited settings
or limited ways. Yet many challenging informatics research problems remain to be solved before
flexible and seamless linking becomes a reality and before systems become capable of delivering
the specific piece of information needed at the time and place a decision must be made.
Connecting the electronic health record to the digital library also requires positive resolution of
important policy issues, including health data privacy, government envouragement of high-speed
communications, electronic intellectual property rights, and standards for health data and for
digital libraries. Both the research problems and the policy issues should be important priorities
for the field of medical informatics.
䡲 J Am Med Inform Assoc. 2000;7:444–452.
The idea of linking automated clinical data and
knowledge-based information to support health care,
research, and education gained prominence in the
early 1980s when the vision of Integrated Advanced
Affiliation of the author: Library of Medicine, Bethesda, Maryland.
This paper is based on material that was first presented in the
1999 Eileen Roach Cunningham Lecture at Vanderbilt University Medical Center, Jun 8, 1999, and in the Priscilla M. Mayden
Lecture at the University of Utah, Oct 28, 1999.
Correspondence and reprints: Betsy L. Humphreys, MLS, National Library of Medicine, 8600 Rockville Pike, Bethesda, MD
20894; e-mail: 具[email protected]典.
Received for publication: 12/21/99; accepted for publication:
3/17/00.
Information Management Systems (IAIMS) was first
articulated.1 The National Library of Medicine’s Unified Medical Language System (UMLS) project was
initiated in 1986 to facilitate the development of
IAIMS systems capable of linking and integrating different types of machine-readable biomedical information, including patient records, the biomedical literature, factual databanks, and expert systems.2
As expected by those involved with IAIMS, UMLS, or
both, the amount of useful patient data, clinical information, and biomedical knowledge in electronic form
has increased dramatically since the 1980s. Also as anticipated, computers have continued to decrease in
cost and size while increasing in speed, functionality,
and ease of use. Not so generally predicted, but even
Journal of the American Medical Informatics Association
Volume 7
more critical for the integration of the electronic
health record and the digital library, the spread of the
Internet and the development of the World Wide Web
have simultaneously:
䡲 Reduced the technical complexity of integrating access to disparate legacy systems developed on different technical platforms
䡲 Provided de facto technical standards to which new
electronic resources can be designed
䡲 Made it possible for researchers, health professionals, and patients both to retrieve and to create information at home as well as in the library, office,
clinic, and hospital
䡲 Increased the perceived benefit of having a computer and an Internet connection
These developments make integrated access to computer-based health records and related knowledgebased information increasingly feasible. The rise of
Web technology has also contributed to expansive definitions of both the electronic health record and the
digital library. In fact, these two concepts now meet
at the edges.
Electronic Health Record Defined
In a 1998 concept paper,3 the National Committee on
Vital and Health Statistics (NCVHS) built on previous
work by the American Medical Informatics Association4 to describe three types of computer-based health
records. In the NCVHS view, patient, personal, and
population health records are needed to facilitate coordination, research, and assessment for clinical care
and public health and to permit individuals to participate more actively in their own health care. Patient
records ‘‘record clinical care and are used by delivery
systems in which doctors, nurses, and other health
professionals provide an array of hospital, primary
care, and other ambulatory and institutional health
services.’’ 3 Electronic patient records are increasingly
using multimedia formats,5 and they are being aggregated into clinical data repositories and warehouses
by many medical centers.6–8
Personal or consumer-oriented health records are ‘‘for
individual use, including assessment of health status
and linkage with physicians’ records.’’ 3 They may also
include knowledge-based information, such as health
education and disease management advice, that is
specifically relevant to the person, or links to such information, as are currently available in several Webbased systems.9
Number 5
Sep / Oct 2000
445
Population health records are derived ‘‘from the
health care system and have been made as non-identifiable as possible for public health and research applications. They may also incorporate survey data.’’ 3
Population health records are used for monitoring
public health and the outcomes of care and also for
health services research, including quality management. In other words, the population health record
envisioned by the NCVHS is a database derived from
both health care and health survey data. The population health data sets now accessible via the Web generally do not combine the two types of data, and their
interactive search capabilities are limited, in large part
by the need to preserve confidentiality.10,11
Digital Library Defined
The term ‘‘digital library’’ may have originated with
the National Science Foundation in 1994, when the
first opportunity for federal digital library grants was
announced. The concept is not sharply defined, and
librarians and computer scientists tend to emphasize
different aspects of it. A good working definition was
proposed by Clifford Lynch in 1995, that is, an electronic information access system that offers the user a
coherent view of an organized, selected, and managed
body of information.12 The digital library focuses on
information accessible via the Internet and encompasses the following materials:
䡲 Materials converted to digital format, including retrospective print and non-print materials. NLM’s
Profiles in Science, which provides access to the papers of eminent biomedical scientists, is an interesting example.13
䡲 Materials newly published in digital format but
also published in print format. Many current biomedical journals fall into this category.
䡲 Materials published solely in digital format, including content that would not or could not be published in print format. To some, this category is the
core of the digital library. Many solely electronic
text documents can be printed without loss of content, but an increasing number incorporate multimedia components and large data sets that are not
amenable to print. Other resources, such as the Visible Human14 and GenBank,15 are essentially unusable except in electronic format.
A digital library is not a single entity. It requires the
technology to link different resources and assumes
that the linkages between individual digital collections and information services will be transparent to
446
HUMPHREYS, Electronic Record Meets Digital Library
the end user. Most existing systems have yet to
achieve this transparency, but there are robust examples of usefully integrated digital collections, including some in biomedicine. The linked information resources and services of NLM’s National Center for
Biotechnology Information represent one of the best
current instantiations of the digital library concept at
a national level.
Given an expansive definition of the digital library,
collections of data aggregated from individual health
records, like the clinical data warehouse or the population health data set, can be viewed as part of the
larger digital library needed to support biomedical research, education, and informed health care decisions.
This is a useful view for institutions that develop and
provide access to digital health data and to knowledge-based information. Regarding aggregated health
data as part of the digital library not only opens up
new funding opportunities but may also encourage
fruitful multidisciplinary cooperation on problems
common to knowledge-based information and aggregated health data, including permanent retention of
electronic information or the need to implement variable user access privileges.
Requirements for Connecting the Electronic
Health Record and the Digital Library
Although aggregations of health data can be profitably viewed as components of a digital health library,
connecting individual electronic health records to
other electronic information in the digital library remains a highly desirable goal. Such connections are
useful both to find the universe of ‘‘patients like this
one’’ and to facilitate access to scientific evidence, accepted treatment practices, and other decision support
tools relevant to particular patients. Early in the
UMLS project, three requirements for effective linking
between disparate sources of machine-readable health
information were identified—technical connections,
organizational connections, and conceptual connections.16 Today, it is clear that a fourth requirement for
linking the electronic health record and the digital library is public policy that permits the technical, organizational, and conceptual connections to be made.
One policy issue that casts a long shadow over the
development of electronic health records and their effective connection to the digital library is health data
privacy. In the United States, a lack of consensus
about the legitimate uses of health data, and about
the appropriate balance between these uses and a patient’s right to confidentiality, has thus far stymied efforts to pass federal health data privacy legislation.
The absence of federal legislation increases public unease about the electronic storage and transmission of
identifiable health information. The failure to enact
U.S. health privacy legislation by Aug 21, 1999, triggered the Health Insurance Portability and Accountability Act’s requirement that the Department of
Health and Human Services issue privacy regulations
that will have the force of law.17 Proposed regulations
were issued in November 1999 and have elicited
about 40,000 comments from interested parties, reflecting the degree of controversy surrounding public
policy in this area. These comments must be analyzed
and addressed before final federal privacy regulations
can be issued.
In addition to privacy, policy issues such as government support for telecommunications, intellectual
property rights, and standards also affect our ability
to forge effective technical, organizational, and conceptual connections between the electronic health record and the digital library. These policy issues are
discussed in the context of the particular type of connections to which they apply.
Technical Connections
The technical connections needed to link the electronic
health record and the digital library include the computing equipment, telecommunications, platform-independent software, logon procedures, and access
controls needed to ensure access to different information sources. These technical matters already have
been greatly simplified by the spread of the Internet
and the Web. It is safe to assume that general technical
advances, not driven specifically by health or digital
library applications, will continue to make it easier to
connect the electronic health record and the digital
library. Technical aspects of format standards for all
types of information (including health records and
electronic publications) will continue to converge and
to increase in flexibility and functionality, as the current move to XML illustrates.18,19 Technology will
drive solutions to now-difficult problems, including
efficient user access control (maybe via systems that
combine biometric scanning and small portable devices with embedded computers) and clinical data entry (maybe via voice recognition systems that make
use of intelligent thesauri). Cheaper mass storage is
likely to be a significant part of the solution to the
problem of making digital information permanently
available.
Access to the Internet is increasing rapidly among the
U.S. population, but ensuring that everyone who
needs health information has appropriate information
technology remains an important challenge. A range
Journal of the American Medical Informatics Association
Volume 7
of federal programs has been designed to promote
connectivity, including the NLM’s Internet connections grants for health institutions.20 After a slow start,
the implementation of the universal service provisions
of the Telecommunications Act of 1996 is now making
access more affordable for some rural health care providers and libraries.21 Nonetheless, reliable high-speed
access to the Internet remains an unsolved technical
or economic problem in some geographic areas.22
As yet, the public Internet cannot deliver the quality
of service needed for many routine health applications. There is reason to hope that engineering developments will make the Next Generation Internet better able to meet the requirements of health care, public
health, and biomedical research. The National Research Council’s Computer Science and Telecommunications Board recently released a report of an NLMcommissioned study of the technical capabilities
required to make the Next Generation Internet suitable for many health applications.23 According to this
report, health applications do not have unique technical requirements, but they do demand complex and
variable combinations of technical capabilities and a
higher degree of security than other types of applications. To ensure that health requirements are addressed in network engineering research and development, the biomedical community must increase its
interaction with the Internet engineering community.
The NLM has recently funded the implementation
phase of a series of innovative medical applications
of Next Generation Internet capabilities that may help
achieve this goal.24
Organizational Connections
Organizational connections are the mutual agreements both in and between institutions to provide or
obtain access to information on different systems.
Even in single organizations, linking systems from
different departments or facilities can be difficult, although institutions that have embraced IAIMS (e.g.,
Vanderbilt University25 and the Oregon IAIMS26) have
shown that it can be done. Lack of incentives for interorganizational cooperation is certainly one of the
primary obstacles to forming aggregate health databases that cross institutional boundaries, as the case
histories of many attempts to develop community
health information networks illustrate.
Perhaps the biggest interorganizational problem currently affecting connections between individual health
records and digital libraries is the difficulty of arranging access to electronic publications produced by
many different organizations, including commercial
Number 5
Sep / Oct 2000
447
companies and scientific societies. Fearing loss of revenue, many publishers wish to use restrictive license
agreements that in essence eliminate the ‘‘fair use’’
rights available under U.S. copyright law and guidelines. In addition, publishers’ customary license agreements may not support remote access by faculty, students, and practitioners—let alone patients—in
clinics, offices, and homes. Working directly with publishers or through third-party consolidators, individual libraries and consortia can be successful in negotiating arrangements that support the uses that are
most valuable to their users, but the negotiations may
be time-consuming and expensive. To date, most biomedical journals available in electronic form continue to be available in print. Often, access to the electronic version means that a library must obtain a print
subscription as well. One way or another, providing
access to electronic journals often costs libraries more
than purchasing print journals, many of which are already staggeringly expensive.
Further complicating the licensing picture is the
Uniform Computer Information Transactions Act
(UCITA),27 recently proposed by the National Conference of Commissioners on Uniform State Laws. This
document, which is intended to provide a uniform
commercial framework for the licensing of information in all 50 states, presents numerous potential problems related to shrink-wrap and click-on licenses, user
rights under the Copyright Act, consumer protection
issues, and transaction costs. As a proposed model
state law, UCITA will be debated, adopted, modified,
or rejected by individual state legislatures.
In the meantime, a major national policy debate about
electronic intellectual property rights continues as society attempts to grapple with the impact of new technologies on the ability to reproduce, distribute, control, and publish information.28 The 1998 Digital
Millennium Copyright Act29 ostensibly preserves fair
use of electronic intellectual property, but under fairly
murky conditions, which will probably be clarified in
subsequent court cases. There is also a strong push to
legislate new sui generis rights for databases, to protect
the investment of those who have expended resources
in aggregating facts or data that are themselves not
covered by current copyright law.30 Current law protects the entire compilation, but not individual facts
in it. The range of data affected could be enormous,
including stock quotes, phone numbers, baseball
scores, gene sequences, names of procedures in coding systems, and clinical values in aggregated health
databases.
Rising concerns about costs and restrictive access to
electronic journals have led to serious efforts to de-
448
HUMPHREYS, Electronic Record Meets Digital Library
velop alternative publication avenues. The Association of Research Libraries’ Scholarly Publishing and
Academic Resources Coalition (SPARC)31 seeks to promote the creation of lower-cost, peer-reviewed electronic journals to compete with specific commercial
journals that are thought to be significantly overpriced. The National Institutes of Health have announced plans to host a free permanent repository of
full-text scientific articles in the life sciences, called
PubMed Central.32 (Earlier versions of this proposal
were referred to as e-Biomed and e-Bioscience.)
PubMed Central will be built by NLM’s National Center for Biotechnology Information, with advice from
an advisory board of nongovernment experts. The
full-text articles it contains will be linked to their corresponding bibliographic citations in the PubMed
database, which will be expanded to include any nonMEDLINE journals or articles deemed to be within the
scope of PubMed Central. PubMed Central may become a primary dissemination mechanism for some
existing and some new electronic journals. Since
PubMed Central will permanently archive all the material it accepts, including high-resolution graphics,
some publishers are expected to deposit articles on a
delayed basis after their original electronic publication. As recent counter-moves by some publishers indicate, PubMed Central and other alternative electronic publishing and archiving mechanisms are
bound to have an effect on scientific publishing.
Conceptual Connections
As any current Web user knows, technical connections and permission to use electronic resources mean
little unless an appropriate conceptual connection is
made between the user’s information need and pertinent content in different digital resources. The
NLM’s UMLS project is focused on enabling these
conceptual connections. It builds intellectual ‘‘middleware’’—electronic knowledge sources and related lexical programs—to help system developers build applications that can interpret user inquiries and find
and integrate relevant information from different information sources.2 The NLM continues to expand the
UMLS products to improve their utility and to make
them easier for system developers to use. Some success has been achieved, and the UMLS data and programs are now in production and research use in a
wide variety of applications at NLM and elsewhere.33,34 Many challenging informatics research
questions remain to be answered, however, before
flexible and seamless linking becomes a reality and
before systems become capable of delivering the spe-
cific piece of information needed when and where it
is needed.35
Linking electronic health records and digital library
resources will become easier when each resource of
interest adheres to content conventions or standards,
such as a defined set of data elements and the use of
controlled vocabularies or classifications in some of
these data elements. This is not to say that different
types of resources will ever have the same set of content standards, just that it is easier if each follows
some set of standards that can be factored into system
development. Reliance on standards has certainly
contributed to the success of the National Center for
Biotechnology Information’s efforts to integrate different genome resources.
A 1990 comparison36 found considerable similarity in
the types of content standards that existed for printed
literature (which constituted the vast bulk of what
was available in 1990) and those needed in the clinical
arena. These types include:
䡲 Standards for what constitutes a description of a
particular entity or event, e.g., a report of an injury
or a catalog record for a book
䡲 Standards that specify the data elements to be included in various types of interinstitutional transactions, e.g., a laboratory test order or an interlibrary loan request
䡲 Standards for allowable values for specific data elements, which might be any value present in a large
formal coding system or controlled vocabulary, e.g.,
the International Classification of Diseases for a discharge diagnosis or the Medical Subject Headings
(MeSH) for subject descriptors in a MEDLINE record.
Although the types of required standards are similar,
the extent to which standardization had been
achieved and the impetus for standardization in the
health care and library arenas were very different in
1990, and they remain very different today.
Health Data Standards
In 1990, there was almost no standardization of clinical information and transactions, although de facto
quasi-standard formats for some administrative and
billing transactions were in wide use, primarily because of Medicare requirements. Today, there is substantially more standardization of the format and content of clinical transactions, particularly for laboratory
tests and drugs, and a fair likelihood that standardization of other types of clinical information will increase. Factors that have contributed to the move to-
Journal of the American Medical Informatics Association
Volume 7
Number 5
Sep / Oct 2000
449
ward standardization include the general trend
toward electronic commerce, increasing automation in
health care institutions, the spread of managed care,
pressures to measure health care quality and outcomes, and heightened awareness of the potential importance of content standards, including controlled
vocabularies. Some of these factors played into the enactment of the administrative simplification provisions of the Health Insurance Portability and Accountability Act of 1996 (HIPAA), which has had a
significant effect on the development of content and
messaging standards for both administrative and clinical data.
lection process has encouraged existing standards
groups to cooperate to complete or modify existing
standards or to develop new ones to meet HIPAA requirements. Speculation that the recommendations
made by the NCVHS in 2000 may lead to additional
clinical data standards has also speeded development
and fostered collaboration between previously competing groups. Although there is probably still a long,
hard road to travel before a complete set of standards
for electronic health data is achieved, its likelihood is
much greater today than it was a decade ago.
In addition to its privacy requirements, HIPAA’s administrative simplification provisions instruct the Secretary of Health and Human Services to establish
national standards for a variety of electronic administrative health transactions, for coding systems
and unique identifiers to be used in these transactions,
and for ensuring the security of electronic health data.
Although HIPAA’s focus is administrative transactions, the line between administrative and clinical
data is not a sharp one, particularly for claims attachments, which can contain detailed clinical information. HIPAA also expanded the role of the National
Committee on Vital and Health Statistics (NCVHS)
to provide wide-ranging advice to the Secretary and
the Congress on health data policy, and specifically
charged the NCVHS to develop advice on any necessary federal action to promote complete electronic
medical records by August 2000.37
Meanwhile, the digital library has yet to achieve the
level of standardization that applies to the organization, management, and sharing of printed materials.
To state the obvious, there is substantial overlap in
the printed materials acquired by different libraries,
and considerable cost savings result if a cataloging or
indexing record created by one library can be used by
another. A relatively small number of large players,
including the Library of Congress and the NLM, create and disseminate bibliographic records for significant segments of the printed literature. If local libraries use the same standards employed by these large
players, locally produced records can be easily integrated with records obtained from outside sources. As
a result, adoption of a standard by key producers or
processors of bibliographic records for printed literature in essence guarantees the adoption of that standard by many other institutions.
HIPAA’s direct impact on clinical standards will come
in the establishment of standards for claims attachments. The proposed rule for claims attachments will
designate the HL7 (Health Level 7) clinical transactions standard38 and LOINC (Logical Observation
Identifiers, Names, and Codes)39 as HIPAA standards.
The expectation that LOINC will become a HIPAA
standard, plus its recent selection as a target system
for the exchange of laboratory test data between the
Department of Defense and the Department of Veterans Affairs in the Government Computer-based Patient Record (GCPR) project, has prompted an interagency federal contract to support LOINC’s ongoing
maintenance and free electronic distribution. Federal
agencies are also exploring government-wide licensing as a method of facilitating use of clinical vocabularies.
As of 1999, the factors that promoted standardization
in records for the printed literature do not yet apply
to most components of the digital library. Although
there is great interest, discussion, and exploration of
the issues involved in describing, organizing, obtaining access to, and archiving electronic information,
consensus on a reasonable strategy for accomplishing
these functions has yet to emerge. Some promising
collaborative tests are underway, but libraries are not
yet generating or sharing large numbers of descriptive
records for electronic resources. Among the many reasons for this are the rapidly evolving nature of electronic information sources; uncertainty about whether
separate descriptive records (distinct from standard
descriptive data embedded in the electronic resources)
will be necessary in the long term; slow progress
in developing efficient mechanisms for integrated
searching of Web documents and records in large existing catalog databases; and unwillingness to expend
resources describing information sources to which access cannot be guaranteed, either because licenses will
become prohibitively expensive or the sources will
just disappear from the Web.
HIPAA has undoubtedly increased the pace of development of health data standards. The Act requires the
government to consult with existing consensus standards groups and to select currently available standards whenever possible. The HIPAA standards se-
Digital Library Standards
450
HUMPHREYS, Electronic Record Meets Digital Library
Under these circumstances, it is not surprising that the
development of standards for electronic information
sources and the necessary harmonization of these
standards with those for printed literature are both in
their infancy. Given the NLM’s mission to improve
access to the results of research, it is fair to ask what
the Library is doing to promote the standardization
and cooperation that will improve current access to
digital health information and ensure future access.
The NLM’s strategy is to use its own products and
services as test-beds for technical and organizational
approaches to organizing and managing digital information. The Library’s goal is to gain experience from
concrete experiments so that it can contribute to the
development of workable national standards and
strategies and also provide useful advice to other publishers of electronic information. Current NLM activities are focused on identifying the metadata and
mark-up tagging needed for the NLM’s own electronic publications and services, and on developing
workable models for collaborative arrangements for
organizing electronic resources, with MEDLINEplus,40
the Library’s new consumer health Web resource, as
a test case for such collaboration.
The proposed Dublin Core set of metadata for electronic resources is the focus of considerable serious
activity and publicity in the Web and library communities.41 As yet, it falls short of a reasonable standard because its extreme flexibility works against the
creation of consistent metadata by different content
producers. Like many other organizations, the NLM
found it necessary to create additional metadata tags
and to impose additional restrictions to promote consistency of application when adapting the Dublin
Core for use in Profiles in Science.13 Metadata may also
be a good way for Web publishers to announce their
intentions regarding the permanence of the documents they are publishing. The NLM has initiated
work to define and convey appropriate levels of permanence for the different types of electronic publications it produces and to develop the policy and
procedures needed to guarantee those levels of permanence.
An important theme in discussions about organizing
and archiving Web-based information is the need for
persistent, unique identifiers for electronic resources
that provide shorter, more permanent links than current URLs. Of the several efforts to establish an infrastructure to support assignment and look-up of permanent unique identifiers for digital entities, the
Digital Objective Identifier (DOI) initiative may be the
most prominent.42 Neither the DOI nor any other system has yet achieved broad acceptance, and today it
appears likely that there will be several different sys-
tems for different types of digital objects, including
some built on existing national bibliographic systems
for print publications.
The success of PubMed and its approach to linking
MEDLINE citations to the full text of articles available
on publishers’ Web sites has alerted scientific publishers to something that medical librarians have known
for years. The NLM’s article citation numbers are permanent unique identifiers for journal articles, and
MEDLINE itself is a publicly accessible directory that
includes the unique identifier, a standard description
of the article to which the identifier refers and, in an
increasing number of cases, the URL for the full text
of the article. Many biomedical publishers now use
NLM identifiers to link journal article references in
their electronic publications to the corresponding
MEDLINE records and, if available, to the electronic full
text of the articles. The Library’s formats for SGML/
XML submissions of citations, abstracts, and now full
text for PubMed Central probably also have a standardizing effect on electronic journal publishing.
A New Environment for Achieving
an Old Goal
‘‘Electronic health record meets digital library’’ is
the Web-era reformulation of the long-standing informatics goal of seamless integration of automated clinical data and relevant knowledge-based information
to allow informed decisions. When this goal first
gained currency, the assumption was that health care
professionals were the decision makers. Clinicians remain a primary target for integrated ‘‘just-in-time’’ information services, but these services are also needed
by public health professionals and, in an era in which
individuals are assuming more responsibility for their
health, by patients and the well public.
Technical developments during the last decade have
set the stage for achieving rapid delivery of specific
knowledge relevant to an individual person or community at the time and place of need. Systems that
can link electronic health data and knowledge-based
information in limited settings or limited ways are
here today. Their existence partly explains the increased public interest in resolving relevant policy issues, including health data privacy, the ‘‘digital divide,’’ electronic intellectual property rights, and
standards for health data and for electronic publishing. While the environment is highly favorable for
progress, many important informatics research problems remain to be solved before electronic health records and digital library resources are linked ‘‘seamlessly’’ to support decisions and actions that improve
Journal of the American Medical Informatics Association
Volume 7
individual and community health. Solutions are likely
to come from the work of multidisciplinary teams of
health professionals, medical informaticians, librarians, computer scientists, linguists, and behavioral scientists and from continuing serious effort to achieve
positive resolution of policy issues. These are worthy
priorities for the beginning of this millennium.
References 䡲
1. Matheson NW, Cooper JA. Academic information in the academic health sciences center: roles for the library in information management. J Med Educ. 1982;57(10 pt 2):1–93.
2. Humphreys BL, Lindberg DAB, Schoolman HM, Barnett
GO. The Unified Medical Language System: an informatics
research collaboration. J Am Med Inform Assoc. 1998;5(1):
1–11.
3. National Committee on Vital and Health Statistics. Assuring
a Heath Dimension for the National Information Infrastructure. Oct 14, 1998. NCVHS Web site. Available at: http://
www.ncvhs.hhs.gov/hii-nii.htm. Accessed Aug 13, 2000.
4. Board of Directors of the American Medical Informatics Association. A proposal to improve quality, increase efficiency,
and expand access in the U.S. health care system. J Am Med
Inform Assoc. 1997;4(5):340–1.
5. Lowe HJ. Multimedia electronic medical record systems.
Acad Med. 1999;74(2):146–52.
6. Nigrin DJ, Kohane IS. Scaling a data retrieval and mining
application to the enterprise-wide level. Proc AMIA Annu
Symp. 1999:901–5.
7. Johnson SB, Chatziantoniou D. Extended SQL for manipulating clinical warehouse data. Proc AMIA Annu Symp.
1999:819–23.
8. Cooper GF, Buchanan BG, Kayaalp M, Saul M, Vries JK.
Using computer modeling to help identify patient subgroups in clinical data repositories. Proc AMIA Annu Symp.
1998:180–4.
9. Cochrane JD. Healthcare @ the speed of thought. Integr
Healthcare Rep. May 1999:1–14, 16–7.
10. U.S. Department of Health and Human Services. Registry
of State-level Efforts to Integrate Health Information. DHHS
Web site. Available at: http://aspe.os.dhhs.gov/statereg/.
Accessed May 18, 2000.
11. U.S. Department of Health and Human Services. Directory
of Health and Human Services Data Resources. DHHS Web
site. Available at: http://aspe.os.dhhs.gov/datacncl/datadir/. Accessed May 18, 2000.
12. Lynch C, Garcia-Molina H. Interoperability, scaling, and the
digital libraries research agenda: a report on the May 18–
19, 1995, IITA Digital Libraries Workshop. National Coordination Office for Computing Information and Communications Web site. Available at: http://www.ccic.gov/
pubs/iita-dlw. Accessed May 18, 2000.
13. McCray AT, Gallagher ME, Flannick MA. Extending the role
of metadata in a digital library system. Proceedings of the
IEEE Forum on Research and Technology Advances in Digital Libraries ’99, May 19–21, 1999; Baltimore, Md, 1999:
190–9.
14. Ackerman MJ. The Visible Human Project: a resource for
education. Acad Med. 1999;74(6):667–70.
15. Benson DA, Boguski MS, Lipman DJ, et al. GenBank. Nucleic Acids Res. 1999;27(1):12–7.
16. Humphreys BL, Lindberg DAB. The UMLS project: making
Number 5
17.
18.
19.
20.
21.
22.
23.
24.
25.
26.
27.
28.
29.
30.
31.
32.
33.
34.
35.
36.
Sep / Oct 2000
451
the conceptual connection between users and the information they need. Bull Med Libr Assoc. 1993;81(2):170–7.
Notice of Proposed Rule Making for Standards for Privacy
of Individually Identifiable Health Information. Federal
Register Nov 3, 1999. Available at: http://aspe.hhs.gov/
admnsimp/nprm/pvclist.htm. Accessed May 18, 2000.
The National Library of Medicine now distributes MEDLINE
data in an XML format, which is described at http://www.
nlm.nih.gov/databases/dtd/nlmmedline.dtd.
Accessed
May 18, 2000.
Dolin RH, Rishel W, Biron PV, Spinosa J, Mattison JE. SGML
and XML as interchange formats for HL7 messages. Proc
AMIA Annu Symp. 1998:720–4.
Information about NLM’s grant programs is available at
http://www.nlm.nih.gov/ep/extramural.html. Accessed
May 18, 2000.
Information about the implementation of the universal
service provisions of the Telecommunications Act of 1996
is available at http://www.fcc.gov/ccb/universal㛭service/
welcome.html. Accessed May 18, 2000.
Wood FB, Cid VH, Siegel ER. Evaluating Internet end-toend performance: overview of test methodology and results. J Am Med Inform Assoc. 1998;5(6):528–45.
National Research Council, Computer Science and Telecommunications Board. Networking Health: Prescriptions for
the Internet. Washington, DC: National Academy Press,
2000.
Information about health applications of the Next Generation Internet funded by NLM is available at http://www.
nlm.nih.gov/research/ngiinit.html. Accessed May 18, 2000.
Stead WW, Borden R, Bourne J, et al. The Vanderbilt University fast track to IAIMS: transition from planning to implementation. J Am Med Inform Assoc. 1996;3(5):308–17.
Ash JS, Hersh WR, Krages KP, Morgan JE, Schumacher R.
The Oregon IAIMS: then and now. Bull Med Libr Assoc.
1999;87(3):347–9.
Information about the Uniform Computer Information
Transactions Act (UCITA) is available at http://www.arl.
org/info/frn/copy/ucitapg.html. Accessed May 18, 2000.
National Research Council, Committee on Intellectual Property Rights in the Emerging Information Infrastructure. The
Digital Dilemma: Intellectual Property in the Information
Age. Washington, DC: National Academy Press, 1999.
Information about the Digital Millennium Copyright Act
is available at http://www.arl.org/info/frn/copy/dmca.
html. Accessed May 18, 2000.
National Research Council, Committee for a Study on Promoting Access to Scientific and Technical Data for the Public
Interest. A Question of Balance: Private Rights and the Public Interest in Scientific and Technical Databases. Washington, DC: National Academy Press, 1999.
Information about the Scholarly Publishing and Academic
Resources Coalition (SPARC) is available at http://www.
arl.org/sparc. Accessed May 18, 2000.
Caelleigh AS. PubMed Central and the new publishing
landscape: shifts and tradeoffs. Acad Med. 2000;75(1):4–10.
Geissbuhler A, Miller RA. Clinical application of the UMLS
in a computerized order entry and decision-support system.
Proc AMIA Annu Symp. 1998:320–4.
Johnson SB. A semantic lexicon for medical language processing. J Am Med Inform Assoc. 1999;6(3):205–18.
Chueh H, Barnett GO. ‘‘Just-in-time’’ clinical information.
Acad Med. 1997;72(6):512–7.
Humphreys BL. De facto, de rigueur, and even useful: standards for the published literature and their relationship to
452
HUMPHREYS, Electronic Record Meets Digital Library
medical informatics. Proc 14th Annu Symp Comput Appl
Med Care. 1990:2–8.
37. Fitzmaurice JM. A new twist in U.S. health care data standards development: adoption of electronic health care transactions standards for administrative simplification. Int J
Med Inf. 1998;48(1–3):19–28.
38. Information about HL7 standards is available at http://
www.hl7.org. Accessed May 18, 2000.
39. Huff SM, Rocha RA, McDonald CJ, et al. Development of
the Logical Observation Identifiers, Names, and Codes
(LOINC) vocabulary. J Am Med Inform Assoc. 1998;5(3):
276–92.
40. Miller N, Lacroix EM, Backus JEB. MEDLINEplus: building
and maintaining the National Library of Medicine’s consumer health Web service. Bull Med Libr Assoc. 2000;88(1):
11–7.
41. Lynch CA. The Dublin Core Descriptive Metadata Program:
strategic implications for libraries and networked information access. ARL Newsletter. Feb 1998;196:5–9. Also available at http://www.arl.org. Accessed May 18, 2000.
42. Lynch CA. Identifiers and their role in networked information applications. ARL Newsletter. Oct 1997;194:12–14.
Also available at http://www.arl.org. Accessed May 18,
2000.