**Panel 1. NLM Resources and Infrastructure for the 21^st^ Century**

**Contents**

[Introduction 1](#introduction)

[Medicine's Library of the 21st Century
2](#medicines-library-of-the-21st-century)

[Scenario 2016: Marshaling Medicine, Information, and Technology to
Battle Disease
4](#scenario-2016-marshaling-medicine-information-and-technology-to-battle-disease)

[Objectives & Recommendations 7](#objectives-recommendations)

[1.1. Objective 1: Reshape the systems that communicate biomedical
information
7](#objective-1-reshape-the-systems-that-communicate-biomedical-information)

[Findings 7](#findings)

[Recommendations 8](#recommendations)

[1.2. Objective 2: Improve the information resources and tools needed to
translate scientific discovery into improvements in health and
individual decision-making
10](#objective-2-improve-the-information-resources-and-tools-needed-to-translate-scientific-discovery-into-improvements-in-health-and-individual-decision-making)

[Findings 10](#findings-1)

[Recommendations 11](#recommendations-1)

[1.3. Objective 3: Develop an expanded workforce of well-trained
biomedical librarians and informaticians
12](#objective-3-develop-an-expanded-workforce-of-well-trained-biomedical-librarians-and-informaticians)

[Findings: 12](#findings-2)

[Recommendations 13](#recommendations-2)

[1.4. Objective 4: Ensure permanent public access to biomedical
literature and data and to associated information.
15](#objective-4-ensure-permanent-public-access-to-biomedical-literature-and-data-and-to-associated-information.)

[Findings 16](#findings-3)

[Recommendations 16](#recommendations-3)

[1.5. Objective 5: Enhance and extend NLM's contributions to emergency
and disaster response
18](#objective-5-enhance-and-extend-nlms-contributions-to-emergency-and-disaster-response)

[Findings 18](#findings-4)

[Recommendations 18](#recommendations-4)

[Conclusion 20](#conclusion)

[Panel Roster 21](#panel-roster)

[Acknowledgements 23](#acknowledgements)

[References 24](#references)

1.  NLM Resources and Infrastructure for the 21^st^ Century

# Introduction {#introduction .unnumbered}

Advances in medical practice, new horizons in medical research,
remarkable growth in the capabilities of information and communication
technologies, and heightened expectations of the public have brought new
responsibilities and challenges to the National Library of Medicine
(NLM). In addition to serving as the "library of record" for the health
sciences, the NLM has become

-   The hub of a nationwide effort to provide instant, up-to-date
    information to health professionals and the public to ensure that
    patients and their care-givers can make informed decisions about
    prevention, diagnosis, and treatment;

-   A key player in developing a national health information
    infrastructure, including coordinating terminologies and standards
    needed for electronic health records and shared data repositories as
    a foundation for high quality, safe health care; and

-   The lead Federal agency, through the National Center for
    Biotechnology Information, in assembling, organizing, and making
    available the kinds of biological data that drive modern life
    sciences research and will enable the future role of genetics and
    genomics in health care and disease prevention.

At the same time, a climate for change in medical practice and research
has emerged fueled by the power of electronic communications, the
embrace of the World Wide Web by health professionals and consumers
alike, new Administration support for Electronic Medical Records,
economic imperatives and the promise of individualized treatment
building on genomic research.

Members of *Panel 1:* *Resources and Infrastructure* have sought to
identify initiatives NLM can take to leverage this convergence of
opportunities and responsibilities and to address the challenges posed
by increasingly sophisticated health information knowledge seekers and
creators. Our particular charge has been to focus on the infrastructure,
methods, and tools that, properly developed and enhanced, will enable
the kinds of activities that have been discussed and encouraged by our
colleagues on the other planning panels whose recommendations follow and
build upon our own. To this end, we recommend that NLM pursue five
objectives as part of the *NLM Long Range Plan 2006-201*6:

-   Reshape the systems that communicate biomedical information.

-   Improve the information resources and tools needed to translate
    scientific discovery into improvements in health and individual
    decision-making

-   Develop an expanded workforce of well-trained biomedical librarians
    and informaticians

-   Ensure permanent public access to biomedical literature and data and
    to associated information.

-   Enhance and extend NLM's contributions to emergency and disaster
    response.

To provide a vision of how accomplishment of these objectives can play
out in the lives of those who affect the nation's health quality and the
recipients of their research and care, we offer below *Scenario
2006-2016*: *Marshalling Health Care, Information, and Technology to
Ensure the Nation's Health Quality.* But we first discuss what will be a
key component to NLM's continued success -- space for staff, space for
the collection, and space for research and collaboration.

# Medicine's Library of the 21st Century {#medicines-library-of-the-21st-century .unnumbered}

Despite great promises on the horizon, all of NLM's information-handling
capabilities are being jeopardized by a lack of adequate space. Present
facilities predate 1987 when Congress established the National Center
for Biotechnology Information (NCBI). Built to hold fewer than 650
staff, the buildings must now accommodate more than 1200 with much of
the increase coming from NCBI. Collection materials are overflowing the
stacks and space for serious collaboration is non-existent.

Clearly, a primary driver of medical progress in the 21st century is
molecular biology and information derived from the Human Genome Project.
The Library's burgeoning National Center for Biotechnology Information
(NCBI) is the information hub in this biomedical revolution, and it is
woefully short of space. The Center brings together powerful computers,
sophisticated software, and highly trained specialists in a
collaborative environment. Its work is vital to the discovery process:
using information to identify interconnections among data elements, to
develop insights, to design experiments, and to analyze outcomes.

Tools emerging from the Human Genome Project have brought hope to
families stricken by hereditary diseases. The Genome Project itself is
transitioning from a primary focus on important basic research to
activities with more direct clinical relevance. The NCBI is the
computational and database focal point in the NIH's new initiative to
connect clinical and genotypic data from large, long-term studies such
as the historic Framingham Heart Studies. Such a resource gives
investigators an unprecedented opportunity to study very large
populations for genetic factors underlying diseases. Not only will
genetic susceptibility to diseases be determined, but therapeutic agents
will in time be developed that can be targeted to the patient's genetic
makeup, ushering in an era of personalized medicine.

NCBI's growth has paralleled its role in assembling and annotating the
human genome sequence. Such efforts allow researchers to identify
diseases genes, to decipher biological mechanisms underlying diseases,
and to design and develop therapeutic strategies for treating and
preventing disease. The GenBank database of DNA sequences from
laboratories around the world has doubled in size every 16 months. It
now contains 57 million sequences and more than 100 billion "base pairs"
from over 140,000 species. 55,000 researchers access GenBank every day.
NCBI's investigators also develop the software tools necessary for
mining genomic data. Examples include tools for comparing nucleic acid
and protein sequences; tools to assist in gene discovery; tools for gene
mapping and large-scale expression analysis; and tools to search for and
compare protein structures.

The entire NLM is expanding its services and its clientele today is no
longer limited to health professionals, scientists, and educators. The
modern web-based environment has transformed the general public into
avid seekers of health information. Professionals and public alike
search the PubMed database of 16 million citations from the biomedical
literature, with more than three million searches per day. NLM's Medline
Plus consumer website brings comprehensive health information to almost
ten million users per month. Another popular site, ClinicalTrials.gov,
provides extensive information about medical research studies around the
world being sponsored by NIH, drug companies, and other research
institutions. NLM also is leading an effort in disaster information
management, a key resource particularly in an era of bioterrorism.

NLM has begun to play a key role in the nation's effort to create a
national electronic medical records system. The widespread adoption of
such a system is dependent upon information standards, agreed-on
vocabularies, and data-handling tools. NLM has a proven track record in
this arena as well. These varied new roles for NLM make the Library
increasingly relevant in the daily lives of the public and require
physical facilities that were not foreseen in decades past.

Inherent in the mandate of the world's preeminent medical library---to
acquire, organize, preserve, and disseminate biomedical information---is
the need for space to house its ever-expanding physical and electronic
collection of biomedical information. These critical resources, many of
which do not exist anywhere else in the world, continue to grow.
Unfortunately, the shelves are filled, special collections are out of
space, and computer rooms have no place to expand.

Additional space for the collection, for NLM's expanding horizons, and
in particular for the growth of the National Center for Biotechnology
Information (NCBI) is critical. A design for a modern, multipurpose
facility has been completed, including within it a unique resource known
as the "Collaboratory. Today's science is dependent on highly trained
experts provided with communications capabilities of a high order and
with access to sophisticated computer-based information resources. The
Collaboratory will provide this by supporting a range of NLM activities,
bringing together staff from the NCBI, the Lister Hill National Center
for Biomedical Communications, the National Network of Libraries of
Medicine, NIH scientists, and visiting scientists in a shared space
where face-to-face collaboration can be combined with people-to-computer
interactions. Medicine's Library of the 21st Century, through this
Collaboratory, will be a central node in a far-flung network that will
allow scientists at the NLM to share knowledge, in real time, with
colleagues, no matter where they may be located. The Collaboratory will
be unique on the NIH campus and will be a magnet for the best scientific
minds to engage in information analysis and discovery.

Developing an expanded facility for the NLM is a small investment
compared to the potential benefits of bringing the latest in biomedical
science out of the laboratory and into the daily lives of millions to
promote health and cure disease.

# Scenario 2016: Marshaling Medicine, Information, and Technology to Battle Disease  {#scenario-2016-marshaling-medicine-information-and-technology-to-battle-disease .unnumbered}

At a community hospital in a small city, a physician, Dr. Johnson, is
meeting with Mr. Walker, a widowed patient with early Alzheimer's
disease and his adult daughter, Ms. Smith to review the blood test
results from his recent annual check-up. The hospital's automated
scheduling system assigned Mr. Walker a time for this follow-up visit
after receiving an alert through Mr. Walker's online health portal that
lab results were back.

Because the hospital uses a standardized patient care system and mirrors
its data at another institution, Mr. Walker's records were secure and
readily available to Dr Johnson's in spite of a recent major fire in the
IT department that destroyed all locally stored records.

Dr. Johnson explains to Mr. Walker and his daughter that his blood test
results were abnormal -- the lab found trace amounts of a particular
combination of proteins in his blood that indicated a very early stage
of a specific type of colon cancer. Dr. Johnson informs them that the
form of colon cancer Mr. Walker has is not a common one and explains
that there are aspects to his cancer that are favorable to his
prognosis. The blood test has found the malignancy in its very early
stages through the detection of proteins the cancer cells produce.

As Dr. Johnson discusses this, he pulls up on his communications monitor
a 3-D visualization of the tumor type and associated proteins from the
NCBI Structure database. He explains that each tumor uses unique
proteins to signal the cells around it that it needs more blood vessels
to grow, while other proteins help the tumor avoid the body's own immune
system. Using the visual aide, the doctor shows the family the specific
proteins detected in Mr. Walker's blood. Fortunately, the blood test Mr.
Walker had is able to identify a tumor's presence with as few as 1000
cells, a size that would be invisible to previous conventional means of
diagnosis such as colonoscopy.

Understandably concerned, Ms. Smith wonders whether knowing about these
proteins will help in finding the optimal treatment for her father. The
doctor explains that each tumor acts differently and different locations
create different tumors. He describes how the newest treatment options
target the unique "personality" of each tumor by examining its protein
profile and determining the best chemotherapy to treat the tumor with a
high rate of success.

Dr. Johnson uses his communications monitor---a device that combines the
functions of computer, telephone, and video/multimedia system---to
connect to an interactive MedlinePlus tutorial that demonstrates for the
family the effectiveness of new chemotherapy treatments on tumors. The
tutorial highlights new agents that have fewer, if any, side effects
than previous approaches. The animated tutorial shows how chemotherapy
treatments are even more toxic to cancer cells with less impact on
healthy cells. After asking Dr. Johnson a few questions prompted by this
video and planning a video consultation with him for the following day,
the family departs.

The blood test results are automatically integrated with Mr. Walker's
medical record, prompting the medical record system to scan the
molecular tumor database to locate the most up-to-date information on
the treatment that will work best for Mr. Walker's specific tumor, based
on its protein and genetic profile.

The system exports data from Mr. Walker's complete medical record (his
personal health knowledgebase, which includes the protein profile and
Mr. Walker's genotype information) into the national patient
databank---a de-identified data warehouse that includes genotypic and
phenotypic data from cancer patients across the country and allows
clinicians and researchers to generate and test hypotheses, such as
mining for early detection of adverse events associated with the
regimen. Dr. Johnson has just taken a CME videoconference presented by
the cancer center's librarian/informationist on the latest upgrades to
the data warehouse system.

The database returns 1,504 cases that match Mr. Walker's tumor protein
profile at the 90% level. The system alerts Dr. Johnson that the case
synthesis on his patient is ready for review. Dr. Johnson is able to
ascertain that the current standard therapy has produced complete
remission in 1,300 cases. Wondering if there are any new treatments that
might be applicable for his patient, Dr. Johnson issues a voice command
to his communications monitor to link to ClinicalTrials.gov. He notes
the tumor type, and the system locates a an ongoing trial with a
previous pilot study of efficacy that showed a high rate of success --
making the tumor undetectable after six months of treatment in 49 out of
50 cases. Dr. Johnson is reassured that new clinical trial protocol
schema automatically account for patients' co-morbid conditions and
concomitant therapies such as Mr. Walker's Alzheimer's medication.

Later, in a virtual video consultation with the family to discuss
treatment options, Dr. Johnson tells them about the new treatment and
discusses its potential benefits and drawbacks. After asking the family
their treatment preference, Dr. Johnson electronically submits Mr.
Walker's medical information to the trial for enrollment. The system
verifies that Mr. Walker meets eligibility criteria, and Dr. Johnson
informs Mr. Walker and his daughter that the Study Coordinator will
contact them with further details and to confirm his participation.

Ms. Smith also asks for information that her father and the family can
review upon leaving the office. Dr. Johnson automatically imports the
3-D tumor and protein structures, the chemotherapy interactive video
from MedlinePlus, the results from the molecular tumor database and the
ClinicalTrials.gov information directly into Mr. Walker's record in the
secure web portal used by the hospital for sharing information with
patients. Dr. Johnson also incorporates statistics on recurrence with
these treatments and links to online Internet discussion groups. Mr.
Walker and family members with authorized access to his personal health
knowledgebase can later review the materials. Through electronic
consultation with the cancer center clinic's librarian/informationist
liaison, Dr. Johnson submits a request for automatic alerts on emerging
literature regarding Mr. Walker's tumor type.

As the family and Dr. Johnson are concluding their call, Dr. Johnson
instructs the computer to update Mr. Walker's periodic health screening
to monitor the effects of the chemotherapy treatment. Automatic
reminders are created in Mr. Walker's online portal calendar as well as
Ms. Smith's PDA device for Mr. Walker to come in for tests, with the
first appointment scheduled two weeks after his first treatment session.

Dr. Johnson asks the cancer center's librarian for recent information
about prevention of recurrence. Searching on evidence based methods, she
retrieves an article showing that dietary interventions such as
increasing consumption of cruciferous vegetable and antioxidant-rich
foods as well as a modest daily dose of a Cox-2 inhibitor have been
shown to prevent a recurrence of colon cancer, Dr. Johnson implements
these recommendations in Mr. Walker's record and enters the citation and
an electronic copy of the article. When Mr. Walker returns home, his
daughter confirms with him that she has access to his scheduling
information and the doctor's recommendations.

From her home, Ms. Smith places a video conference call to other members
of the family. She and her siblings, who, at his request, have access to
their father's personal health knowledgebase, discuss the information
learned at the physician's office. Later, Ms. Smith calls to check on
her father. His specialized caller ID phone displays his daughter's
photograph and information from their last phone call in order to jog
his memory.

One evening the following week, an alert is broadcast from the local
public health department to Mr. Walker and his daughter that there has
been an outbreak of streptococcal infection in Mr. Walker's zip code
identified by electronic disease surveillance in the area; given his
current immune status, the alert recommends that Mr. Walker contact his
physician immediately if he is experiencing current signs or symptoms of
infection (e.g. sore throat, chills). The web portal broadcasts this
alert to Mr. Walker's television and Ms. Smith's PDA. Ms. Smith
immediately logs into her father's online medical record system and
sends an instant message to Dr. Johnson indicating that her father has
complained of pharyngeal pain within the last 24 hours. Dr. Johnson
responds within minutes that he too received the alert and sends an
electronic prescription for antibiotics to Mr. Walker's pharmacy that
Ms. Smith can pick up on her way home from work. Ms. Smith calls her
father to inform him that she will bring in his medication that evening.
From his alert, Mr. Walker also elects to view a brief five-minute video
developed by the cancer center library describing strategies for
preventing infection during chemotherapy.

While at the pharmacy, Ms. Smith recalls something she read in the
librarian-supplied article that Dr. Johnson attached to her father's
record and wonders if supplementing her father's diet with a
multivitamin with antioxidants would be helpful. She picks up a brand of
vitamins she has read about lately, but is concerned that it may
interact adversely with her father's other medications. She types the
UPC code on the bottle of vitamins into her PDA to check against the
interactions database of her father's personal health knowledgebase and
learns that this particular brand may lessen the efficacy of his
chemotherapy. The system recommends another type of antioxidant plus
multivitamin that does not interact with the other components of his
current regimen and inserts a note in Mr. Walker's portal indicating
this potential addition to his medication list.

Several weeks later, Ms. Smith and Mr. Walker are back in Dr. Johnson's
office for their scheduled appointment. Dr. Johnson brings up Mr.
Walker's medical record and sees that Mr. Walker's tumor-related protein
levels have responded as expected to the intervention, returning to
undetectable levels. The blood test results after the last chemotherapy
treatment indicate that Mr. Walker's cancer has gone into clinical
remission.

# Objectives & Recommendations {#objectives-recommendations .unnumbered}

This scenario describes the health care decision-making process that
health care professionals and patients, including their families, will
enjoy before 2016. Each scenario element features tools and databases in
the development of which NLM will play a key role .In the remainder of
the report, we briefly discuss each of the five objectives that were
specified in the introduction and offer recommendations on how the
objectives can be achieved through efforts by the NLM and thereby can
support the capabilities envisioned in the scenario above.

# Objective 1: Reshape the systems that communicate biomedical information  {#objective-1-reshape-the-systems-that-communicate-biomedical-information .Objective}

The systems for organizing and managing access to information that have
served the biomedical community well for the past century had their
roots in the print formats of monographs and journal articles. The
scenario envisioned above will require the development of new systems
for communicating knowledge systems that take full advantage of the
promises inherent in digital, interactive media to communicate medical
discoveries. *Index Medicus* and MEDLINE enabled researchers and
clinicians to discover relevant articles. The ability to automate
discovery and to follow links in the digital world turned those
invaluable tools into access mechanisms as well as finding aids. The
next step is to develop systems that will enable more rapid and
efficient synthesis of information into knowledge usable by patients
themselves as well as by their healthcare providers.

As the 21^st^ century advances, the basic conception of scientific
communication is shifting from the published literature as the knowledge
base for discovery to the notion of an integrated and interactive
knowledge base accessed through a digital portal. This knowledge base
includes reports of investigations, text, image, audio, and video media,
as well as the underlying scientific data. The challenge is to organize
this knowledge base to facilitate managing, mining, retrieving, and
integrating content as needed. Increasingly, the real work of scientific
communication will depend on research databases, information in
institutional repositories, raw datasets, multimedia objects, and other
forms of digital data. Integrating tools are required to make all of
these forms and formats "findable" and accessible.

By building on the work that the NLM has always done in organizing
information and will play a crucial role in developing systems to bring
useful knowledge to the finger tips of individuals such as Mr. Walker,
his daughter, and the members of his health-care team. Other objectives
in this report address aspects of meeting this challenge; Objective 1
focuses specifically on developing standards for presenting research
information and developing diverse information presentation models for
diverse audiences.

## Findings {#findings .unnumbered}

The array of research information sources has expanded dramatically. In
the digital era, a multiplicity of forms and formats has erupted very
rapidly. While this profusion results in new, and potentially more
effective, ways to represent information, it also greatly multiplies the
difficulties of effectively using and extending information sources. In
many cases, data and analyses are contained in proprietary, difficult to
access resources built with no thought of sharing the information.
Individual systems tend to be designed with a single user population in
mind -- thus, databanks that gather information useful to clinicians may
not be structured to be useful to epidemiologists. In addition, while
the notion of doing systematic reviews and meta-analyses in order to
generate knowledge from a body of research literature is becoming widely
accepted, the structure of the journal literature makes doing such
analyses extremely expensive and time-consuming.

A similar problem exists with the wealth of biomedical education
objects. They exist in many diverse formats, repositories, user
interfaces and databases, and are not shareable. This fosters redundant
efforts and reduces the opportunities to discover new pedagogical
methods and resources.

NCBI's *Entrez* system offers a glimpse into the possibilities for
advancing scientific discovery by integrating data together in an
interoperable system. *Entrez* users can search gigabytes of sequence,
gene, taxonomy and literature data simultaneously across a growing
number of databases with this powerful, easy to use system. Traversing
literature and molecular sequences via "neighbors" and links provides
powerful, intuitive ways to explore the data and discover answers. This
resource foreshadows benefits that can flow from tighter integration of
all biomedical data services.

By building on the Entrez system, and integrating with other NIH
information databases, NLM can begin to serve as a data portal, building
a robust system that integrates while providing curation, organization,
analysis, discovery, education, and archiving. Popular document
processing tools can be enhanced to create documents that automatically
capture metadata (author, title, MeSH headings, PubMed and Genbank
citations, etc.) thereby generating NLM metadata (the NLM DTD). Without
this kind of tightly woven system, it will be difficult or impossible to
develop the kinds of analysis that will enable the scientific community
to avoid redundant research and to do the kind of meta-analysis
necessary to achieve the most knowledge out of the research that is
being done.

While journal articles may not be the primary communication mechanism in
some scientific disciplines, journal articles will not disappear; in
fact the literature will be much more richly indexed and cross-indexed.
Tools to categorize and summarize research information will be important
for sharing information across disciplines and across research
communities, as well as for communicating the research results to an
even larger population.

An additional challenge lies in solving the technical and human issues
that prevent uniformly accessible biomedical data across institutional,
national and international boundaries. Research is decentralized, but
researchers require integrated data. Developing tools and data standards
that enable interoperability across multiple integrating centers is
difficult, but doable. Dealing with the ownership, access and other
policy issues that impede open global access is even more complex..

## Recommendations {#recommendations .unnumbered}

1.  Support research that illuminates the value of interactive
    publications that enhance learning, understanding, and retention of
    scientific and health concepts.

2.  Develop standards and best practices for data curation for research
    reports and the underlying data sets that accompany them,
    recognizing that different communities (e.g., health care practice
    vs. biomedical research) may need data structured in different ways.

    1.  Develop an ontology of scientific, clinical, and health
        information that enables multiple views of the same information.

    2.  Develop standards for how journal articles can be structured so
        that their content can be easily exchanged and incorporated into
        large scale databanks.

3.  Support research and implement systems that enable NLM users to add
    to customized data repositories by importing content from other
    relevant systems.

    1.  Extend the Entrez repository of raw datasets so that scientists
        can analyze it, and intelligent agents can mine it.

    2.  Federate with other archives having unique collections and with
        other national libraries to build a worldwide bio-informatics
        data and document library.

4.  Enhance NLM's efforts to provide just-in-time information delivery
    to biomedical researchers, clinicians, and citizens by establishing
    custom-tailored interfaces for NLM systems and databases.

    1.  Support the development of software agents to integrate, access,
        and repackage information (data mining across multiple
        information resources).

    2.  Develop systematic probing of NLM databases via sophisticated
        algorithms that dynamically delivery research tailored to
        individual user's needs and interests. 

    3.  Establish feedback mechanisms that can track information usage
        across different audiences in order to provide incentives and
        knowledge about presenting information content.

    4.  Encourage the development of document editing tools that
        automatically create NLM metadata as a document creation
        byproduct.

# Objective 2: Improve the information resources and tools needed to translate scientific discovery into improvements in health and individual decision-making {#objective-2-improve-the-information-resources-and-tools-needed-to-translate-scientific-discovery-into-improvements-in-health-and-individual-decision-making .Objective}

Shortening the gap between scientific discovery and its translation into
evidence-based improvements in health care is one of the major
challenges facing the biomedical community. Beginning in 2000, the
Clinical Research Roundtable, convened at the Institute of Medicine, has
taken a leading role in identifying barriers to effective translational
research including a lack of clinical research informatics
infrastructure, shortage of informatics-trained leaders in clinical
research, poor integration with clinical systems, data sharing barriers
and the need for standards adoption in clinical research systems \[1\].
An editorial commenting on this report called the situation a "national
crisis" \[2\]. Payne et al. make a strong case for the integration of
biomedical informatics and translational research. \[3\]

The Roundtable has challenged stakeholders in the U.S. clinical research
enterprise to collaborate to address four major challenges -- enhancing
public participation in clinical research, developing information
systems, fostering an adequately trained workforce, and funding
crosscutting translational research. Examples include standards-based
clinical research information systems and integration of clinical
research systems with the electronic health record. Other areas of
research focus include open source approaches to standards-based
research data repositories, solutions to data de-identification,
national systems for sharing de-identified data, and leveraging the
personal health record as a source of research data.

## Findings {#findings-1 .unnumbered}

NLM already has an established leadership role in many of the
"challenge" areas. For example, the IAIMS initiative fostered the
development of clinical information systems in academic health care
institutions and provides a possible model for the development of
translational research systems. The Unified Medical Language System
provides a standard platform for vocabulary integration, and NLM should
continue to develop and support other electronic data interchange
standards, as well as standards for human-computer interaction. NLM has
set the standard for clinical trials information through
ClinicalTrials.gov and should continue to improve the system not only to
enhance the public's understanding of and ability to participate in
clinical trials, but also to contribute to the scientific base that
allows faster and more trustworthy translation from bench to bedside.

NLM can have a significant impact by funding informatics training of
individuals, including clinicians, clinical researchers, computer
scientists, librarians, and information scientists to address the
informatics needs of translational research. (Objective 3 in this report
addresses workforce recommendations more fully.) NLM funding of research
to develop, implement, and evaluate informatics solutions that address
translational needs would be a major step toward narrowing the gap
between research and practice.

NLM's continued participation in national policy efforts such as the
National Health Information Infrastructure initiative to develop
standards for interoperability among clinical, public health, and
personal health information electronic systems will ensure that these
efforts are based on a solid informatics infrastructure.

The NLM should take a leadership role not only in reacting to the
changing landscape in which libraries operate \[4-9\], but also in
shaping the future impact that biomedical libraries can have. The
development and use of sophisticated technologies, educational and
community building activities, and active engagement in public policy
debates will all contribute to the successful library of the 21^st^
century.

NLM's resources represent a "treasure trove" of biomedical information
\[10\]. In addition to developing new resources, refining and evaluating
existing ones, and reaching out to its diverse constituencies, NLM
should support research that will make it easier to share tools that are
tailored to the researcher, clinician, health care professional, and
health care consumer; so that all have tools unique to their own needs.

The realization of the recommendations listed below will make it
possible for a family physician of the future to meet with a patient and
his family members, to access the patient's data in real time, including
importing data from the patient's personal health record, integrate it
with a host of NLM resources, access available tutorials and other
educational and explanatory materials, identify relevant clinical
trials, and finally export all of this just-in-time, patient-relevant
information back into the personal health record -- all within the space
of an office visit. This future Dr. Johnson will be able to take all of
these tools and resources for granted because the underlying information
infrastructure will be robust, easy to navigate, and dynamically
custom-tailored for the task at hand.

## Recommendations {#recommendations-1 .unnumbered}

5.  Serve as the leading national center for open-source, translational
    research tools and resources through the development of:

    1.  Data collection tools and standards in support of intelligent
        integration of phenotypic and genomic information resources;

    2.  Data mining tools and algorithms for knowledge discovery; and

    3.  Seamless application interfaces for all of NLM's online
        resources, facilitating both integration of NLM internal
        resources and facilitating integration with external
        applications.

6.  Tailor information interfaces and knowledge resources for specific
    types of users, presenting multiple views of scientific and clinical
    data.

7.  In the personal health record, link scientific and clinical
    information in ways that are understandable for patients and their
    families.

8.  Work collaboratively with national policy making initiatives and
    academic medical centers to identify best practices in translational
    research.

# Objective 3: Develop an expanded workforce of well-trained biomedical librarians and informaticians {#objective-3-develop-an-expanded-workforce-of-well-trained-biomedical-librarians-and-informaticians .Objective}

Over the next ten years highly trained bioinformaticians and medical
librarians will play critical roles in the development of systems to
support basic and clinical research, to deliver just-in-time health and
emergency response information for use with decision-support tools, to
link such tools to the relevant literature, and to ensure permanent
access to electronic and print information. The greatly expanded
workforce required to meet these demands will require retraining of
today's workers to assume new roles and recruitment into the profession
of additional talented individuals with library, computer and biomedical
skills.

Educators in the fields of library and information science and
biomedical informatics and the institutions and companies that hire
their graduates have a huge stake in developing an adequate pool of
potential recruits to the profession, but that pool will be positioned
near the end of the K-12/college education continuum. Thus expanding the
cadre of biomedical librarians and informaticians will be directly
dependent on expanded science literacy in the population as a whole -- a
process that begins with a child's first science and mathematics
lessons.

In the 1995 long-range plan on *The Education and Training of Health
Science Librarians*, NLM laid out four goals for recruitment and
education that still apply but could be expanded and invigorated \[11\].
The *Long Range Plan 2000-2005* outlined the need for expanding the
supply of information specialists in clinical medicine, health policy,
and biomedical informatics.\[12\] In response, NLM established the
Informationist Fellowship funding program, which enables qualified
individuals to design training programs that develop an
interdisciplinary educational track that includes courses in the health
sciences and in information science to become informationists, also
called in-context information specialists. This model is successful in
broadening the knowledge of individual recipients, but its highly
individualized nature may not foster scalable models and thus may not
yield sufficient trained individuals to meet future informationist
needs. NLM's semi-annual Biomedical Informatics Course at Woods Hole
offers an excellent model for continuing education. \[13\]

## Findings {#findings-2 .unnumbered}

The 21^st^ century health infrastructure's requirements for a diverse
population of biomedical informaticians and biomedical librarians can be
met only through an aggressive recruitment and retention program.
Recruiting efforts at all levels must seek new audiences and attract
more applications from underrepresented groups. However, there are
serious pathway issues regarding how best to accomplish this. Currently
most recruits discover serendipitously an interest in informatics or
librarianship; fields that they may not previously have known existed or
suspected they would be interested in pursuing.

Serendipity must give way to the development of programs designed to
make young people knowledgeable consumers of health information and in
the early years of college (and ideally even in high school) to inform
them about the career opportunities that exist in health and biomedical
informatics and librarianship including the high quality, rigorous
training programs to which they can apply.

Opportunities for broader visibility and success of NLM's various
educational programs are lost because there is limited coordination of
its diverse educational efforts and no appropriate contact point for
partner organizations and for prospective students. Similarly no
identified group at NLM works with the media to promote biomedical
informatics and library science as career paths.

In addition, the tools used to search for biomedical information today
are primarily text based, with new models being developed to search in
different languages and formats such as images, audio, and video. The
next generation of search technology could include search for such
attributes as taste, smell, texture, reflectivity, opacity, mass,
density, tone, speed, and volume. \[14\] Biomedical informaticians will
be needed to coordinate efforts to develop these complex technologies,
and highly trained librarian will be needed to take full advantage of
them. In *Scenario 2016,* Dr, Johnson used the systems developed by such
highly trained professionals to determine the appropriate treatment for
Mr. Walker.

New approaches to the measurement of educational and behavioral outcomes
are needed as new information technologies are introduced. In the past,
most measures of success had to do with inputs and outputs, but today
most programs and services measure outcomes, or the effect the service
had on the individual or community. There is research on this topic in
the library community at large but it needs to be translated in the
biomedical field. The outcome of Mr. Walker's cancer treatment was
favorable, but can it be proven that the access to the information
technologies in the scenario definitely contributed to this outcome?
Factors of influence need to be built into systems to show that their
use did contribute to a positive outcome.

## Recommendations {#recommendations-2 .unnumbered}

9.  Expand NLM's existing educational programs to reach new audiences
    and attract more applicants.

    1.  Coordinate NLM's external educational efforts to provide an
        appropriate contact point with partner organizations, and to
        work with the media to promote biomedical informatics and
        library science as career paths.

    2.  Work with existing training programs, the NN/LM and professional
        associations to develop materials, web sites, or visits to
        academic and health science institutions for K-12 and college
        students to enhance the visibility of biomedical informatics and
        encourage more young people to develop career plans and
        educational pursuits that will allow them to be strong
        candidates for graduate programs in the field.

    3.  Encourage recruiting efforts that target a diverse range of
        applicants.

10. Continue the Woods Hole course and consider its expansion by
    developing a complementary course that addresses the special needs
    of hospital-based informationists, librarians, administrators,
    information technologists, and clinicians.

    1.  Partner with appropriate external organizations to develop and
        keep current a broad range of courses in information access, new
        technologies, and NLM services for primary access librarians and
        other biomedical information personnel. These would include
        continuing education courses as are held today, and hopefully
        research will reveal more innovative models that can be adapted.

    2.  Ensure adequate space for collaborative study groups at the NLM
        campus.

11. Foster further growth in centers of educational excellence in the
    areas of library and information science, biomedical informatics,
    and translational research skills in information management.

    1.  Encourage collaboration and knowledge sharing among NIH funded
        centers, informatics training programs (including special
        emphasis programs in the area of translational research),
        schools of library and information science, the NN/LM and
        professional associations leading to the development of distance
        learning activities, continuing education, the creation of web
        repositories of sharable educational materials, and models for
        training programs.

    2.  Support the development and evaluation of scalable models of
        training and practice that meet established guidelines and
        mandate educational tracks that focus on in-context training.

12. Support research into how best to train today's healthcare workforce
    for tomorrow's technologies

    1.  Support research on cognitive processes, organizational theory
        and information seeking behavior that will enhance the ability
        of biomedical personnel and the public to utilize health
        information resources effectively.

    2.  Support research on new approaches to the measurement of
        educational outcomes and the development of methods to effect
        behavioral change as influenced by the introduction of new
        information technologies.

# Objective 4: Ensure permanent public access to biomedical literature and data and to associated information. {#objective-4-ensure-permanent-public-access-to-biomedical-literature-and-data-and-to-associated-information. .Objective}

By 2016 the NLM's "virtual" collections - the information it makes
available in electronic form -- are expected to dwarf its physical
holdings. The shift from a primarily print world to a primarily digital
information world not only is reshaping biomedical communication and
information distribution, but also presents formidable challenges to
those entrusted with ensuring access to and preservation of health and
biomedical information. Long-term solutions must be sought to protect
electronic journals, datasets, web documents, interactive publications
and other formats on which 21^st^ century research and education
depends. Short-term solutions are needed now to prevent valuable digital
information from disappearing in the interim.

As more and more publishers produce their journals and other materials
only in electronic form, libraries are moving from ownership to licensed
access with its concomitant restrictions on use and its lack of
assurance that material will be available to future users and the
general public. As space constraints become more acute, many libraries
are removing lower-use print collections to gain space for collaboratory
and individual study and research. Many hospital libraries are closing;
others are experiencing declining budgets that reduce critical frontline
health personnel's access prohibit access to electronic resources. As
scholarship and research are transformed, universities and medical
institutions are producing much new scientific information exclusively
in complex digital formats, requiring extensive technical infrastructure
to preserve and validate over the long term.

These trends serve to increase dependence on NLM as the guarantor of
future access to biomedical information. If NLM needed to deal only with
preserving, in electronic form, the digital versions of stable journal
articles, the problem would be difficult enough. But in the ephemeral
world of electronic scholarship, variant versions of articles exist and
are proliferating, along with new formats that do not even fit the
traditional concepts of journal articles. Discoveries from
non-traditional health professions and animal health fields are not
easily found in the published literature databases or other
repositories. An unknown number of "published" online monographs undergo
silent revisions, fallible articles are deleted as if they never
existed, and much of the primary work of science is conducted and
communicated prior to its documentation in the literature.

The technical, economic and policy issues (licensing, copyright and
digital rights management, privacy, and standards) involved in
preservation and access are massive and beyond the capability of
individual libraries or institutions to resolve. These issues must not
be left solely to institutions or commercial entities that do not have
the long-term stability or the commitment to the public good that will
be required to sustain the long-term preservation effort needed. NLM
must take a leadership role in partnering with other stakeholders to
support technical research, standards-based formats, development of
geographically dispersed trusted repositories and other collaborative
efforts to ensure preservation of and user-friendly persistent access to
important commercial and non-commercial digital content.

Imagine the consequences to the characters in *Scenario 2016* if these
issues were not addressed. If the NIH funded PubMed article Ms. Smith
needed were accessible only through payment of a high access fee, she
might not have been able to obtain the information she needed to
understand her father's condition fully. Automatic alerts from the
emerging literature that Dr. Johnson required to follow Mr. Walker's
condition might have lacked important articles and data that were not
indexed and preserved, or not available without the payment of high
access fees. Multi-dimensional electronic visualizations that help to
detail tumor characteristics are still so complex to save within
databases that they simply are not widely available to practicing
physicians when needed.

## Findings {#findings-3 .unnumbered}

NLM has begun to address some of these issues using its own electronic
output and services as test beds for archiving web documents and web
cast presentations. Research projects are underway to explore key
functions of digital preservation systems -- file intake and migration,
automated metadata extraction and storage requirements. PubMed Central
(PMC), NLM's digital archive of indexed medical and life science
journals, offers a partial solution for electronic journals and a
promising model for future cooperative efforts. A strategy for
preserving similar materials not included in PMC is essential.

NLM has made significant progress in preserving its traditional print
collections through microfilming of brittle books and journals,
conservation of rare historical materials and adoption of a modern
disaster prevention and response program. Space constraints in NLM's
current building, however, limit its ability to accept additional print
collections of value, and to fulfill its mission as library of last
resort for the world's biomedical literature. Digital technology offers
promise in providing the infrastructure needed to preserve and provide
permanent access to additional portions of the NLM print collection as
well as its pictorial and archival materials. Strategies for handling
audiovisual materials are under consideration, but preservation of the
NLM collection alone will not assure preservation of the biomedical and
health science record. Unique and important biomedical resources are
held by other U.S. national libraries, NN/LM member libraries and
libraries in other countries. Preservation of these important resources
cannot be assured without national and even international planning and
coordination.

## Recommendations {#recommendations-3 .unnumbered}

13. Develop a comprehensive strategy for preserving and providing access
    to NLM's current and future collections including commercial digital
    content. Ensure adequate space and technology for the preservation
    of large quantities of print and digital material.

    1.  Continue to build PMC with content for both current access and
        preservation purposes, and expand content to include alternative
        medicine, animal health, and scientific knowledge from around
        the world, with seamless connection to locally developed
        institutional repositories.

    2.  Develop a national strategy and create tools to support the
        preservation of and access to unique historical, rare book,
        artifactual, archival or strategically important collections of
        NLM, NN/LM and other libraries with related collections.

14. Partner with LC, the National Archives, NSF, NN/LM and others
    including international organizations and institutions to develop a
    comprehensive digital preservation strategy for worldwide biomedical
    materials, addressing both subject scope and technical issues.

    1.  Work with government, academic and industry partners to develop
        standards for the creation, quality control, access, migration
        and long-term persistence of digital content in existing and
        emerging formats including: scientific datasets, visual and
        multi-media material, and interactive, collaborative, networked
        "publications."

    2.  Extend R&D efforts to automatically extract descriptive and
        technical metadata so as to index images and other formats as
        they are scanned to permit easy archiving and reuse.

15. Promote open access through the NIH Public Access Policy and efforts
    with other federal agencies to extend public repositories using PMC
    as a model.

# Objective 5: Enhance and extend NLM's contributions to emergency and disaster response {#objective-5-enhance-and-extend-nlms-contributions-to-emergency-and-disaster-response .Objective}

Recently, and in particular since the events of 9/11, information
activities related to disaster and emergency preparedness and response
have expanded to cover the gamut of natural and manmade disasters. Major
issues for NLM are (1) assuring continuous operation of its own
information services; (2) identifying which information is critical for
emergency response, and (3) identifying public and private organizations
it can most effectively partner with to maximize its technological and
human contributions to providing biomedical information for emergency
response and preparedness.

## Findings {#findings-4 .unnumbered}

Emergencies occur across jurisdictional boundaries (local, state,
national, international.) Lines of authority may be unclear or in flux
in emergency situations. In such cases, communications interoperability
and ready access to information like patient records, location of health
facilities, hazardous substance databases, and health alerts can mean
the difference between life and death.

The Library has implemented prudent measures to secure its own
information services in emergency situations. An offsite computer
facility on a different power grid with multiple Internet access
providers supports uninterrupted service from NLM's key systems. Some
services are actively served by both sites, each acting as a hot standby
for the other. For the warm and cold standby services, NLM cooperates
with the NN/LM to regularly test rerouting requests for service and
assistance when one of the two facilities is unavailable. In addition,
key NLM datasets are mirrored at other sites around the world. The NLM
plans to expand these emergency response capabilities. Recent events
point up the need for cooperative development of an emergency response
information plan to clarify the roles first responder libraries and
librarians will play before during and after an emergency and to
identify more specifically the kinds of information they should be
prepared to supply. Local 211 agencies, health organizations and other
agencies are working to identify resources in their own areas, and it is
important to consider how this information can be organized and
integrated into a national structure. NLM should investigate these
issues and consider expanding both the datasets they provide in
emergencies and their peering relationships with institutions around the
world.

Over the years NLM has experimented with technologies to deliver
information when and where needed by emergency responders. The Library
also has supported disaster information management research and system
development, including grants to test novel knowledge representations,
decision support, and context-appropriate information fusion. These
applied informatics programs allow NLM to play a central role in
delivering just in time information resources.

## Recommendations {#recommendations-4 .unnumbered}

16. Maintain NLM's current contingency plans to assure continuous
    service.

    1.  Upgrade service level agreements and redundancy as planned.

    2.  Seek more peering partners for digital holdings and expand the
        scope to include Medline Plus, Clinical Trials, Toxnet, and
        others.

    3.  Coordinate with NN/LM to perfect procedures for rerouting
        services during temporary or long-term disruptions of service.

17. Identify and serve first responders' information needs.

    1.  Identify first responders' roles and information needs and
        identify roles and needs of first responder libraries and
        librarians.

    2.  Explore possible library pairing to provide personnel and other
        assistance in emergencies.

    3.  Exploit widespread availability of mobile devices to deliver
        just-in-time information to first responders.

    4.  Determine how NLM can contribute to integration of national and
        locally available health information and resources to meet first
        responder needs.

18. Expand emergency management informatics research.

    1.  Research the delivery of just-in-time information to first
        responders.

    2.  Determine how NLM can contribute to communications
        interoperability during emergencies.

# Conclusion  {#conclusion .unnumbered}

The Long Range Planning Panel 1- *NLM Resources and Infrastructure for
the 21^st^ Century,* presents a best assessment of essential activities
NLM should undertake in the next ten years. The panel has identified
five objectives and associated recommendations that build on NLM's
strengths in the foundational areas of access, standards,
interoperability of systems, and training of biomedical librarians and
informaticians. These strengths are illustrated by NLM's past record of
accomplishments such as PubMed, MedlinePlus, UMLS, TOXLINE, the
Associate Fellows Program and the Biomedical Informatics training
programs at several universities and in the course at Woods Hole. To
accomplish these objectives NLM will collaboratively and cooperatively
partner with agencies, institutions, and organizations.

Although all five objectives are important, the Panel places particular
emphasis on Objective 4: Ensure permanent public access to biomedical
literature and data and to associated information. Beginning with John
Shaw Billings, access to the biomedical literature is the rock on which
NLM has built its distinguished record of service. It is the single
institution qualified to lead the effort to assure that 21^st^ century
users will continue to enjoy such access.

Finally, members of Panel 1unanimously concur that critical to
successful implementation of all recommendations is approval of an
expanded facility for NLM to house the essential resources: people,
collections, tools, and collaboratory space.

# Panel Roster {#panel-roster .unnumbered}

**Co-Chairs:**

Dr. Edward Shortliffe\
Rolf H. Scholdager Professor & Chair, Department of Biomedical
Informatics\
Deputy Vice President for Information Technology\
Columbia University Medical Center\
New York, NY

Ms. Gail Yokote\
Associate University Librarian for Research Services & Collections\
Shields Library\
University of California at Davis\
Davis, CA

**Members:**

Dr. Marion Ball\
IBM Fellow, Global Leadership Initiative\
Business Consulting Services, IBM\
Baltimore, MD

Mr. Charles Carlson\
Director of Life Sciences\
The Exploratorium\
San Francisco, CA

Dr. Ana Cleveland\
Professor\
School of Library and Information Sciences\
University of North Texas\
Denton, TX

Ms. Rosalind Dudden\
Health Sciences Librarian\
National Jewish Medical & Research Center\
Denver, CO

Dr. Nunzia Giuse\
Library Director\
Eskind Biomedical Library\
Vanderbilt University\
Nashville, TN

Dr. James Gray\
Distinguished Engineer\
Microsoft Bay Area Research Center\
San Francisco, CA

Mr. Bruce James\
Public Printer of the U.S.\
U.S. Government Printing Office\
Washington, DC

Mr. Donald Ward King\
Research Professor & Visiting Scholar\
School of Information & Library Sciences\
University of North Carolina-Chapel Hill\
Chapel Hill, NC

Dr. Henry Lowe\
Chief Information Officer\
Stanford School of Medicine\
Stanford, CA

Dr. Alexa McCray\
Lecturer on Medicine\
Harvard Medical School\
Boston, MA

Dr. Scott Phillips\
Assoc. Clinical Professor of Medicine\
University of Colorado Health Sciences Center\
Lone Tree, CO

Mr. T. Scott Plutchak\
Director\
Lister Hill Library of the Health Sciences\
University of Alabama at Birmingham\
Birmingham, AL

Ms. Sarah M. Pritchard\
University Librarian\
Davidson Library\
University of California\
Santa Barbara, CA

Dr. Barbara Ross-Lee\
Dean\
New York College of Osteopathic Medicine\
Old Westbury, NY

Ms. Jean Shipman\
Director\
Tompkins-McCaw Library for the Health Sciences\
Virginia Commonwealth University\
Richmond, VA

Ms. Sally Sinn\
Director of Administration\
Council on Library and Information Resources\
Washington, DC

Mr. Kent Smith\
Consultant\
National Library of Medicine\
Bethesda, MD

Ms. M.J. Tooey\
Director\
Health Sciences and Human Services Library\
University of Maryland at Baltimore\
Baltimore, MD

Ms. Linda Watson\
Director of Health Science Libraries\
University of Minnesota, Twin Cities\
Minneapolis, MN

**Writing assistance:**

Ms. Duane Arenales\
Former Chief, NLM Technical Service Division\
Bethesda, MD

# Acknowledgements {#acknowledgements .unnumbered}

The Scenario Working Group of Panel 1 headed by Nunzia D. Guise, MD,
MLS, AHIP acknowledges the following sources for elements of *Scenario
2016: Marshaling Medicine, Information, and Technology to Battle
Disease:*

MedlinePlus -
[*http://www.medlineplus.gov*](http://www.medlineplus.gov/)

ClinicalTrials.gov --
[*http://www.clinicaltrials.gov*](http://www.clinicaltrials.gov/)

PubMed Central --
[*http://www.pubmedcentral.gov*](http://www.pubmedcentral.gov/)

NCBI Structure Database --
<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Structure&itool=toolbar>



Health/Technology articles

Said C. Old age in the technology age: new devices to monitor health
and well-being at home a growing new sector. \[online news article\].
San Francisco Chronicle, August 8, 2005.

[*http://sfgate.com/cgi-bin/article.cgi?file=/c/a/2005/08/08/BUG7PE2HL01.DTL*](http://sfgate.com/cgi-bin/article.cgi?file=/c/a/2005/08/08/BUG7PE2HL01.DTL)

Greene K. When we're all 64. \[online news article\] Wall Street
Journal, September 26, 2005
[*http://online.wsj.com/ad/article/aviva/SB112723609287646296.html*](http://online.wsj.com/ad/article/aviva/SB112723609287646296.html)

Wolbarst AB, Hendee WR. Evolving and experimental technologies in
medical imaging. Radiology. 2006 Jan; 238 (1): 16-39.

Kageyama Y. Toshiba develops mobile-phone technology. \[online news
article\]. Business Week Online. February 15, 2006*.
<http://www.businessweek.com/ap/tech/D8FPMVDG1.htm>*



Vanderbilt University Informatics Center / Eskind Biomedical Library
(Dario Giuse, Rebecca Jerome, Taneya Koonce, Nila Sathe, Annette
Williams)

"Strategic Plan for VUMC Informatics & Roadmap to 2010" Sept 2005 --
Leverages elements from futuristic visioning vignettes created at the
Vanderbilt Informatics Center \--
[*http://www.mc.vanderbilt.edu/infocntr/IC_Strategic_Plan_05.pdf*](http://www.mc.vanderbilt.edu/infocntr/IC_Strategic_Plan_05.pdf)

Vanderbilt University Informatics Center / Eskind Biomedical Library
(Dario Giuse, Rebecca Jerome, Taneya Koonce, Nila Sathe, Annette
Williams)

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