**Panel 2. NLM Health Information for Underserved and Diverse
Populations in the 21^st^ Century**

**Contents**

[Introduction 1](#introduction)

[2.1. Objective 1: Develop a Research Agenda to Produce Effective NLM
Products and Services, and Promote Access and Use
3](#objective-1-develop-a-research-agenda-to-produce-effective-nlm-products-and-services-and-promote-access-and-use)

[Trends and Issues 3](#trends-and-issues)

[Findings 4](#findings)

[Recommendations 6](#recommendations)

[2.2. Objective 2: Promote Health Literacy as a Foundational Goal for
Patients, Families and the General Public
7](#objective-2-promote-health-literacy-as-a-foundational-goal-for-patients-families-and-the-general-public)

[Trends and Issues 7](#trends-and-issues-1)

[Findings 8](#findings-1)

[Recommendations 10](#recommendations-1)

[2.3. Objective 3: Expand the Audience and Extend the Reach of NLM
Domestically and Internationally
11](#objective-3-expand-the-audience-and-extend-the-reach-of-nlm-domestically-and-internationally)

[Trends and Issues 11](#trends-and-issues-2)

[Findings 13](#findings-2)

[Recommendations 14](#recommendations-2)

[2.4. Objective 4: Integrate Disaster and Emergency Response Health
Information Locally and Nationally
16](#objective-4-integrate-disaster-and-emergency-response-health-information-locally-and-nationally)

[Trends and Issues 16](#trends-and-issues-3)

[Findings 17](#findings-3)

[Recommendations 18](#recommendations-3)

[2.5. Objective 5: Explore New Medical Information and Informatics
Collaboration Models for Developing Regions
20](#objective-5-explore-new-medical-information-and-informatics-collaboration-models-for-developing-regions)

[Trends and Issues 20](#trends-and-issues-4)

[Findings 21](#findings-4)

[Recommendations 22](#recommendations-4)

[2.6. Objective 6: Inspire Americans to Seek Careers and Explore New
Information Roles in the Health Sciences and Professions
24](#objective-6-inspire-americans-to-seek-careers-and-explore-new-information-roles-in-the-health-sciences-and-professions)

[Trends and Issues 24](#trends-and-issues-5)

[Findings 25](#findings-5)

[Recommendations 27](#recommendations-5)

[2.7. Objective 7: Help Resolve Digital Divide and Technology Issues
28](#objective-7-help-resolve-digital-divide-and-technology-issues)

[Trends and Issues 28](#trends-and-issues-6)

[Findings 29](#findings-6)

[Recommendations 31](#recommendations-6)

[Panel Roster 32](#panel-roster)

2.  NLM Health Information for Underserved and Diverse Populations in
    the 21^st^ Century

# Introduction

This panel was tasked with developing proposed strategic directions to
guide NLM's outreach efforts over the next decade. The primary purpose
of outreach is to help assure that NLM's current and potential users are
aware of and can make effective use of the NLM's world-class health
information resources. NLM has a long standing commitment to outreach,
which has been the subject of prior Long Range Planning efforts and
reports approved by the NLM Board of Regents that include domestic and
international outreach initiatives.[^1]

The focus of NLM's outreach has changed over time, starting with a
primary emphasis on health providers, biomedical researchers, and
medical librarians. Since the advent of the World Wide Web revolution,
NLM's outreach mission has extended to include the general public, and
most recently community-based organizations (CBOs) as effective partners
in this effort.

This panel has focused in particular on future directions for NLM's
outreach to underserved and diverse communities at home and, to the
extent practicable, abroad. The definition of underserved and diverse
includes remote and rural areas, disadvantaged urban areas, minority
racial and ethnic communities, and other population, cultural, or
geographic groups that have limited or no access to NLM's health
information, whether due to geographic, socioeconomic, technical,
educational, or racial factors.

The panel undertook this task against the backdrop of NLM's substantial
outreach activities over the last two decades. Much of NLM's recent and
current outreach work is well summarized in NLM's *Strategic Plan for
Addressing Health Disparities 2004-2008*.[^2] In a nutshell, the
strategies underlying NLM's health disparities plan include:

-   Increasing the scope of information products and services to include
    culturally sensitive information where appropriate;

-   Employing communication methods that are racially sensitive and
    culturally appropriate;

-   Improving the information infrastructure and communications
    capabilities of minority and rural communities and academic
    institutions;

-   Training minority health professionals, information and librarian
    professionals, and community members to use quality health
    information resources; and

-   Building effective outreach partnerships with community-based and
    professional organizations.

NLM's current outreach portfolio is spread across several units,
including the National Network of Libraries of Medicine (National
Network Office), Office of Outreach and Special Populations (Specialized
Information Services), Office of Communications and Public Liaison,
Office of Health Information Programs Development, and various units in
Library Operations.

The panel has, for the most part, focused on the objectives, trends and
issues, findings, and recommendations that we believe can be helpful to
NLM in continuing its strong tradition of and commitment to outreach,
going forward. The panel's report is oriented primarily towards meeting
the health information needs of underserved and diverse populations in
the United States. These include, but are not limited to, the Native
American, Hispanic/Latino, African American, and Asian American minority
communities. The panel recognizes the limits of what NLM can do
overseas, but has included discussion of opportunities to leverage and
build on prior and current work in Sub Saharan Africa and Central
America, and possibly to transform NLM's partnerships with the
international medical library and medical informatics communities.

While the main focus here is on the underserved and diverse segments of
NLM's current and potential user base, the panel recognizes that many of
our suggestions if implemented would also benefit NLM's general outreach
to all population groups and user segments.

Finally, for each of the seven major objectives around which this report
is organized, the panel has concluded with a short list of
recommendations. We have classified the recommendations as falling into
one of three categories:

-   Formative---activities that are quite difficult, remarkable,
    formative if they happen;

-   Major Extension---of existing activities, at NLM or elsewhere in the
    health information and medical informatics communities;

-   Easy---important activities that are relatively easier to achieve.

# Objective 1: Develop a Research Agenda to Produce Effective NLM Products and Services, and Promote Access and Use {#objective-1-develop-a-research-agenda-to-produce-effective-nlm-products-and-services-and-promote-access-and-use .Objective}

## Trends and Issues

Over the last two decades, NLM has moved from a primary focus on
outreach to medical librarians, health providers, and biomedical
researchers to a mission that now includes, as well, the general public.
This is an important opportunity to contribute to improving the Nation's
health care and public health systems. But providing health information
to the lay public presents new challenges.

Until the late 1990s, NLM's primary health information research agenda
focused on defining, understanding, and meeting the information needs of
the health providers and researchers, and the librarians who serve them.
Through applied research and development, testing, and evaluation, NLM
was able to continually refine and improve its world-class MEDLINE
database as the "gold standard" in the biomedical community.

With the advent of the World Wide Web and the bipartisan support for
E-Government and "citizen-friendly" government services, NLM in recent
years has moved to the forefront of the consumer health information
movement as well. MedlinePlus has become the most heavily used US
Government-sponsored health information web site, and among the leading
group of consumer health information sites worldwide.

Yet despite the success of MedlinePlus and other leading consumer health
information web sites, two major challenges have emerged: 1) what are
the factors that actually motivate individuals to use health information
in a manner that constructively and positively impacts their health
decision-making and, ultimately, health behaviors and outcomes; and 2)
what are the methods by which health information can be *effectively*
offered to underserved populations which, in addition to 1), have
special socioeconomic, cultural, and community circumstances that need
to be taken into account.

The power of the World Wide Web revolution has become obvious. The
ability of computer and Internet-empowered individuals to find health
information (among many other types of information) for health
improvement is potentially revolutionary for health care. One could say
potentially, because accessing information is only part of a complex
equation by which individuals use such information in ways that may or
may not translate into serious attention and healthy decisions and
behavioral changes. The equation is further complicated for those who
face economic, educational, and other challenges typically associated
with underserved communities.

Better understanding these equations of individual use, and the cultural
and community contexts of such use, is the impetus for a new research
agenda that could help NLM further enhance its consumer health
information services and outreach to all citizens, and especially to
underserved and diverse populations.

NLM made a good start at developing such a research agenda in connection
with the December 2004 Symposium on Community-Based Health Information
Outreach. The white papers and presentations prepared for the symposium
covered significant parts of relevant intellectual terrain.[^3] Several
papers were subsequently published in a special supplement of the
Journal of the Medical Library Association.[^4] The following findings
and recommendations are consistent with, and build upon, the symposium
work.

## Findings

1.  In the past, the model of "From Bench to Bedside" has served as a
    very useful description of the NLM/NIH research agenda. Now, the
    panel has concluded, this vision needs to be extended to "From Bench
    to Bedside to Person in Need," regardless of access point. This
    could be in a hospital or clinic or doctor's office, but also, for
    example, at a library, community center, home, or on the road. This
    new model recognizes the increasing importance of clinical trials
    but more important, the fact that in today's health care environment
    and for the foreseeable future, the individual has a crucial role
    and responsibility. The research agenda that lies ahead will explore
    how the resources and services disseminated by the NLM are
    understood and employed by an incredibly diverse user community.
    Current NLM/NIH grant programs need to be reviewed to assure
    compatibility with the new research agenda.

2.  The trust patients and other health consumers place in health
    information, sources, and providers may be a key factor affecting
    consumer use of such information, and ultimately the impact of such
    information on their health decisions, behaviors, and outcomes.
    Research on health information transfer and trust building needs to
    draw new insights from interdisciplinary approaches. The proposed
    applied research emphases would benefit greatly and should draw from
    and utilize cognitive science principles and cultural translation
    strategies. The research should identify and assess the varied
    elements that go into effective health communication---types of
    messages and channels, use of natural and understandable language,
    role of information intermediaries, supporting and enabling
    community or peer groups and organizations, diversity and
    characteristics of persons receiving the information, etc. The
    research also should consider the elements affecting overall
    consumer trust---sources, sponsors, reviewers and review process,
    selectors and selection process, public access channels,
    interpreters and screeners, etc. Finally, the research should
    include innovative approaches to informed consent to research
    participation that could streamline the consenting process, and help
    individuals better understand the risks and benefits.

3.  The panel believes that research on health information outreach to
    diverse underserved populations likewise would benefit greatly from
    interdisciplinary approaches. Communications science, library and
    information science, and medical informatics have all made
    substantial progress over the last decade: e.g. from the field of
    communication, with its emphasis on the design of messages to
    effectively transmit expert information; from the field of library
    and information science, with its emphasis on meeting user needs;
    and from the field of medical informatics, with its emphasis on
    technology-mediated information transfer. But these advances have
    not yet been fully translated and applied to the outreach knowledge
    base that is central to NLM's outreach mission. Mechanisms for
    developing and collecting lessons learned are needed, especially
    with regard to community-based outreach.

4.  Further, the panel has concluded that there is a growing need to
    better understand and assess the impact of NLM web sites and other
    services on patient behavior and ultimately patient health,
    especially for underserved patients. It would be important to insure
    that any outcome measures address culturally relevant aspects
    related to the underserved. For the last several years, NLM and
    other health information providers have increasingly focused on not
    only the provision of online health information but on the use and
    impacts of such information. NLM has incorporated questions on use
    and impact in online user surveys, in the hopes of learning more
    along these lines. NLM also subscribes to various national public
    opinion surveys that attempt to better understand the public's use
    of health information. NLM, other NIH Institutes and Centers (ICs),
    and other DHHS units have sponsored or participated in a variety of
    pilot projects that attempt to link health information and health
    behaviors and conditions. While NLM and others have a better
    understanding than earlier, there is much still to learn. The panel
    believes that a robust research strategy is needed to more closely
    link the provision and use of online health information to their
    impacts on consumer health behaviors and ultimately on health
    promotion and disease prevention and treatment. An improved
    understanding of the linkages would provide a basis for
    identification and implementation of varied policy options.

5.  As NLM's mission has extended to include the health information
    consumer and general public, so too has the need to better
    understand the role of information intermediaries such as librarians
    who work directly with health consumers. For this research,
    libraries would include public, college or university, and school
    libraries as well as medical libraries. A hypothetical example of a
    positive outcome in this context is information that helps a patient
    achieve full involvement in his or her health care and health
    practices, and has the by-product of increasing her or his trust in
    the process. This might take the form of literature hooks within the
    personal health record, of 'push-technologies' that present relevant
    health information based on properly --authorized patient
    parameters, and differentiating between information created for use
    by the reader, and information that also must include instruction or
    interpretation guidance for an intermediary who will ultimately
    present it to the patient. Another goal would be to explore ways to
    build on the community's confidence in libraries (and other
    intermediaries) as a source of health information to enhance use of
    that information in clinical research and health care. It is
    particularly important that these types of activities specifically
    target the underserved, where developing public confidence and trust
    is an essential outcome for any investment.

6.  The panel believes that partnerships are an essential component of
    accomplishing this research agenda. However, new models are needed.
    Standard clinical trials, even if conducted with members of minority
    groups, will not yield the knowledge necessary to insure that the
    underserved and diverse populations of the United States have
    effective access to health information. The panel emphasizes the
    need for strong, viable partnerships with community-based
    organizations. This could include university-community network
    alliances created for health-related purposes, and other established
    partnerships or network alliances between research and community
    organizations. Characteristics of partnership-driven research
    include: co-creation of the research goals and methods; inclusion of
    culturally relevant variables and procedures; and attention to the
    needs of both audiences---the community, and the relevant scholarly
    disciplines. Also, budgets for such projects may need to include
    non-traditional expense items, such as rent and overhead for
    community-based organizations, and staff support time and
    administrative costs for the necessary relationship building on the
    part of the funding organization. Finally, evaluation of proposals
    that emerge from community-research partnerships may well require
    innovative review groups and methods.

## Recommendations

1.  (FORMATIVE) Support research on cognitive and cultural models that
    may facilitate *effective* health information transfer to and trust
    building among health consumers and the lay public, and exploit the
    benefits of collaborating with cognitive, social and computational
    as well as biomedical and library/information science researchers.

2.  (MAJOR EXTENSION) Support research on new methodologies and
    performance measures suitable for evaluating the impact of NLM
    health information products and services on patient care and health
    outcomes.

3.  (EASY) Support research on community-based and -focused partnerships
    and on critical paths for communication of health information in
    culturally and cognitively-acceptable ways at the community level.
    Consider modifications to the grant process and evaluation and
    funding criteria, technical assistance in proposal preparation, and
    informed consent, which would encourage direct involvement of
    community groups and streamline public participation.

4.  (EASY) Support research on the larger information environment of
    consumer health information, understanding the role of libraries and
    librarians (and other health information intermediaries) and how
    information is transferred and knowledge created on the part of the
    patient/consumer in the library and outreach settings.

# Objective 2: Promote Health Literacy as a Foundational Goal for Patients, Families and the General Public {#objective-2-promote-health-literacy-as-a-foundational-goal-for-patients-families-and-the-general-public .Objective}

## Trends and Issues

Health literacy is an old problem with a new face. Concerns about the
literacy of the US population go back several decades, and a focus on
health literacy has intensified over the last decade or so. Despite
numerous studies and programs, there appears to have been little
progress in reducing the percentage of Americans with literacy
challenges.

The new face of health literacy is driven by three key trends: 1) rapid
increase in the availability and use of online health information
available from multiple public and private web sites---those who do not
know how to use or use effectively such information are at an
information disadvantage which may exacerbate health disparities; 2)
growing financial crisis in the US health care system which is reducing
the amount of doctor-patient "face time" for discussing and explaining
diseases and conditions; and 3) intensified emphasis on self-informed
patients and healthy behavior and lifestyles as keys to improving health
conditions and reducing the financial and care support burdens placed on
the US health care system.

Best estimates are that about ninety million people, almost half of all
American adults, have difficulty understanding and consequently using
health information, according to a 2004 report published by the
Institute of Medicine.[^5] An earlier oft-cited 1995 study published in
JAMA by Williams, Parker et al,[^6] noted that fully one- third of
English --speaking patients could not read basic health materials, more
than 25% could not read their appointment slips and an even larger 42%
were unable to understand the prescription labels. Rima Rudd, of the
Harvard School of Public Health and the National Center for the Study of
Adult learning and Literacy, states that the average U.S. adult has
limited functional literacy skills. Functional literacy is defined as
the ability to read in order to learn and to do, that is, to interpret
and analyze and make decisions. These statistics are particularly
alarming for the underserved population in our society that is most
vulnerable, most at risk.

A useful operational definition of Health Literacy is one used in the
report Healthy People 2010[^7] and also reiterated in the IOM report[^8]
(and sourced to Ratzan and Parker[^9]): "Health literacy is the degree
to which individuals have the capacity to obtain, process, and
understand the basic health information and services they need to make
appropriate health decisions."

But as the IOM and other authors have pointed out, Health Literacy is
more than the difficulty faced by any one individual and extends to and
is impacted by the capacity, skills, responsiveness, expectations of
health care and health information providers, health care system
administrators, communicators, the media, etc.

As the IOM report states, "Health Literacy is where the expectations,
preferences and skills of individuals seeking health information meet
the expectations, preferences and skills of individuals providing
information." As such, health literacy is relevant to the mission of all
organizations, public and private, seeking to provide health information
to the public, certainly including NLM.

Fortunately, many organizations, including other governmental agencies,
professional associations, and private foundations, have engaged the
Health Literacy issue. Thus NLM has the opportunity to craft its own
complementary role that can leverage the efforts of others and focus on
those areas where NLM could make a clear value-added contribution.

## Findings

1.  The problems of Health Literacy present a formidable though not
    insurmountable challenge to all organizations with a consumer health
    information mission. Health Literacy issues could jeopardize the
    overarching vision and goals of the National Library of Medicine in
    the area of community health and outreach to underserved populations
    in particular. NLM and others in this arena face the concern that if
    not aggressively addressed, Health Literacy issues could undermine
    or impede realization of the vision of an informed and "activated"
    consumer armed with "executable" knowledge.

2.  The panel concluded that the nature of the problem of Health
    Literacy is such that NLM cannot solve it alone. Many of the
    systemic solutions fall outside the mission of NLM. There are many
    tested and tried solutions, practical tools and resources, policies
    that have been implemented and are being considered, and studies
    that have been and are being conducted.

3.  There are many divergent disciplines and interests in the area of
    Health Literacy since the issue is a complex one. There are also
    several valid approaches used to help mitigate contributing factors
    that negatively impact Health Literacy. These factors may be
    socio-economic, cultural differences, language barriers, literacy
    challenges, age factors and others. The plurality of approaches and
    the presence of multiple players help prescribe and focus the
    available and feasible strategies for NLM. A common theme is that
    health information is useless unless it moves effectively to the
    user and may be acted upon by the user. The health information needs
    to be designed, written, formatted, and communicated in such a way
    that it is "executable" by the end user, including multi-media and
    interactive materials.

4.  The panel identified a range of specific Health Information Literacy
    program priorities: a) Health Information Literacy needs to be
    addressed in the educational systems (K-12 and college, including
    science classes and clubs and health education courses) and by the
    media; b) Health Information Literacy also needs to be better
    understood in the context of intermediaries such as family health
    information "managers" or "gatekeepers," local public libraries,
    community health advocates such as Promotores de Salud in the
    Hispanic/Latino community and health aides in the Native American
    community, and other community-based organizations like the Boy
    Scouts and Girl Scouts, advocates for underserved populations, and
    faith-based organizations; c) An important component that needs
    special attention is the concept or risk and risk management when it
    comes to health-related decisions and behaviors---we need to improve
    operational understanding of risk, at both the personal and societal
    levels; d) Overall, the challenge is to focus on how to structure
    and present actionable health information in a context that is
    relevant to lay persons.

5.  The panel believes that NLM is uniquely positioned to fulfill a
    small number of carefully delimited strategic roles with regard to
    Health Information Literacy. These roles include: a)
    Coordinator---as a neutral body, NLM may play a role as coordinator
    or facilitator bringing the divergent players and interests in
    Health Information Literacy together for coordinated action; b)
    Guide and Role Model---as the preeminent and trusted source of
    health information, NLM may take a leading role in developing and
    funding the the practical implementation of Health Information
    Literacy tools and communication vehicles; and c) Advocate---NLM is
    uniquely structured, through the NN/LM Network of libraries, to
    reach the most sophisticated researchers, practicing health
    professionals, community health workers, faith-based and other
    community-based organizations, and the general public. NLM may use
    this structure with its long, broad, and deep reach to increase
    awareness and heighten sensitivity to the Health Information
    Literacy issue. Additionally, within the NIH structure, NLM may
    further this advocacy role as a partner with other NIH Institutes
    and Centers with similar and complementary interests, such as the
    NIH National Center on Minority Health and Health Disparities
    (NCMHD). A recent IOM report concluded that greater trans-NIH
    collaboration was needed in understanding and defining health
    disparities and in building the collective knowledge base to
    effectively address health disparities, especially among underserved
    populations.[^10]

## Recommendations

1.  (FORMATIVE) NLM As Guide and Role Model: Support research and
    experiments with visual representations, games, and sensory aids to
    text that may enhance communication and understanding of health
    information, and make the results readily available and accessible.
    Incorporate feedback from such experimentation and related testing
    into NLM databases, tools, resources and communication vehicles
    where appropriate. Contribute to the development of executable
    knowledge about Health Information Literacy across a broad spectrum
    of persons and levels of learning.

2.  (MAJOR EXTENSION) NLM As Advocate: Expand the membership of the
    NN/LM to include groups that have a role in Health Information
    Literacy (perhaps as associate members). Use the NN/LM to provide
    Health Information Literacy resources and training. Expand the NN/LM
    marketing, training and educational role in Health Information
    Literacy. Encourage all Regional Medical Libraries to introduce a
    Health Information Literacy initiative into their regular program
    activities.

3.  (EASY) NLM As Coordinator: Develop a stand alone web portal or add a
    web portal to an existing NLM web site that will become a primary
    resource center and point of entry for locating Health Information
    Literacy tools and materials. The portal could include listings of,
    and facilitate NLM cross-linking and partnerships with, a wide range
    of other groups, such as the IOM Roundtable on Health Literacy and
    National Institute for Literacy, that have interests in Health
    Information Literacy and that sponsor or participate in relevant
    conferences and related activities.

# Objective 3: Expand the Audience and Extend the Reach of NLM Domestically and Internationally {#objective-3-expand-the-audience-and-extend-the-reach-of-nlm-domestically-and-internationally .Objective}

## Trends and Issues

NLM's core mission includes both the development and operation of high
quality health information databases and services, and a vigorous
outreach program to help assure that the "customer" community is aware
of and makes effective use of health information available from NLM. As
noted earlier, the definition of NLM's core user community has expanded
over time, from an earlier emphasis on physicians and other health
providers, biomedical scientists, and medical librarians, to the current
scope which includes as well all sectors of the lay public.

Similarly, NLM has long recognized the importance of the international
health and biomedical community. MEDLINE is the authoritative
bibliographic database to the biomedical journal literature, including
journal articles from the highest quality journals from around the
world. Typically, about one-half of the MEDLINE entries are from non-US
journals.

Domestically, NLM's outreach program intensified in the late 1960s with
the formation of Regional Medical Libraries (RMLs). The original eleven
RMLs were consolidated into seven RMLs which are unchanged in geographic
coverage today except for the division of the northeast region into
two---Middle Atlantic, and New England---for a current total of eight
RMLs. Since the formation of the original RMLs, NLM has gradually
expanded the number and reach of the members of the national medical
library network. By the late 1980s, the network included almost 3,000
members drawn from medical, hospital, and clinic libraries. The 1989 NLM
Long Range Plan Report on Outreach,[^11] known as the "DeBakey" report
after Dr. Michael E. DeBakey who chaired the Outreach Planning Panel,
gave further impetus to the RMLs and led to the formation of the
National Network of Libraries of Medicine (NN/LM), which now includes
almost 5,000 members. Of these about 140 are known as Resource
Libraries, most of which are the medical libraries that serve the
Nation's medical schools and other major health organizations. The
report also recommended intensified outreach to health providers in all
areas of the country, with special emphasis on rural, remote, and
underserved areas and populations.

About a decade after the DeBakey Report, the Web revolution was in full
swing, and electronic dissemination of health (and other) information
was no longer limited to expensive dial-up systems that cost on the
order of \$25 to \$50 per hour. The Web opened up access to health
information to everyone who had a computer and Internet connection. In
part due to this technological opportunity, and because of the desire to
empower consumers in the health arena, NLM's mission was expanded by the
Board of Regents and the US Congress to include the general public as
well. MedlinePlus was launched as a consumer-oriented complement to
PubMed, the then nascent Web front end for MEDLINE (and successor to
Internet Grateful Med, the highly successful in its time dial-up gateway
to MEDLINE). Both PubMed and MedlinePlus have become world-class web
sites in the health information space.

Over the last seven years, NLM and the NN/LM have given considerable
emphasis to outreach to the general public, while at the same time
maintaining their traditional outreach to health providers and
researchers, and medical librarians. Most recently, NLM and the NN/LM
have learned that community-based outreach is an important way to reach
the general public and underserved populations in particular. The
December 2004 Symposium on Community-Based Health Information Outreach,
mentioned earlier, was a turning point towards mainstreaming
community-based outreach as part of NLM's overall outreach strategy. The
Symposium also gave further impetus to need for strengthened outreach
evaluation, building on and extending the work of the NN/LM's Outreach
Evaluation Resource Center over the last five years.[^12] This could
include updating the original Outreach Planning and Evaluation field
manual to cover CBO applications.[^13]

Internationally, in the pre-Web days, NLM entered into agreements with
21 countries to establish what were known as International MEDLARS
Centers, one per country. The bilateral agreements allowed NLM to
provide licensed copies of updated magnetic tapes with the latest
MEDLINE entries, so that the MEDLARS Centers would load the tapes
locally on their own computer systems and conduct searches or allow
in-country users to link directly to the Center. The MEDLARS Centers
were, by and large, effective in providing access to MEDLINE in these
select countries. But the vast majority of countries had no MEDLARS
Center, and, even in countries with MEDLARS Centers, there was
considerable variability as to the actual extent of access provided.
Nonetheless, the MEDLARS Center concept worked reasonably well for over
two decades prior to the Web revolution.

An NLM Long Range Plan Report on international activities in 1998
concluded that the Web revolution would overtake the original concept of
the MEDLARs Centers, and that a new type of network, perhaps more
flexible with different functions, and extending to more countries,
might be appropriate.[^14] The 1998 report was prescient in that today
international usage of MEDLINE (via PubMed) has increased dramatically
(by several fold) and now accounts for over half of PubMed usage. Even
MedlinePlus, primarily focused on the US health consumer market, has
about one-third of its usage from outside the US. MedlinePlus en espanol
has about 90 percent of its usage from Spanish-speaking countries in
Central and South America (plus Spain). And the number of countries
generating significant usage of PubMed and MedlinePlus far exceeds the
number of countries with MEDLARS Centers. These usage trends are
expected to continue and even intensify, as more countries get more
extensively connected to the Internet.

In addition, in recent years, various NLM units have undertaken special
outreach projects in select areas of the world. A case in point is the
Specialized Information Services Division, which is supporting several
health information projects in Central and South America. Another major
initiative is NLM's leadership role in the Multinational Initiative on
Malaria. NLM has provided significant funding and coordination in
developing and upgrading the Internet infrastructure for malaria
research laboratories in several Sub-Saharan African countries. This
effort has extended to include not only technical Internet connections,
but also access to biomedical journals and document delivery on
affordable terms for malaria researchers.[^15]

## Findings

1.  The NN/LM successfully expanded its membership beyond academic
    medical libraries and primary access libraries (i.e. hospitals) to
    include affiliate members, such as public libraries that provide
    health information services directly to consumers, during the last
    NN/LM contract period. The inclusion of other types of libraries
    into the NN/LM network was done in order to more effectively reach
    the health consumer population. The panel concluded that the time
    has come for the next logical step, which is to open NN/LM
    membership to other types of community-based organizations and
    agencies that provide health information to consumers or are
    interested in doing so. In this way, the panel believes that new
    health information partnerships between librarians and community
    organizations will be fostered, and the NLM's ability to reach the
    general public and underserved populations will be enhanced.

2.  Many U.S. libraries are working independently to develop
    relationships with libraries in other countries. These relationships
    or international partnerships are often called "sister libraries."
    The panel believes that the National Library of Medicine can help to
    bring these efforts together in a coordinated way. Other
    organizations such as the Medical Library Association and the
    American Library Association can assist in creating sister libraries
    and fostering these partnerships. These efforts will support NLM's
    goal of trying to better reach underserved populations by working
    more closely with the libraries of the populations we are trying to
    serve. One way to get closer to these populations is to work with
    these libraries to develop resources, training, and education in a
    variety of languages. These efforts could extend to a redefinition
    of the International MEDLARS Centers Program and, in general, the
    future directions of NLM's International Program. NLM's
    international audience and reach could be expanded by creating a
    global network of medical libraries that might be called the World
    Network of Medical Libraries (WNML). The WNML or similar might be a
    successor program to the International MEDLARS Program. The panel
    notes that, to date, by taking advantage of the NLM/PubMed/DOCLINE
    infrastructure, a demonstrable positive impact has been possible at
    relatively modest investment on the part of participating libraries.
    This effort could be extended. Working with foreign libraries could
    increase accessibility to health materials in foreign languages that
    might be useful for U.S. underserved populations. A related
    possibility might be to incorporate some sort of advisory group into
    NLM's international work, perhaps including representation from
    "sister library" and WNML (or similar) network activities.

3.  The panel believes that further improvements in outreach planning
    and evaluation are crucial to success in both domestic and
    international outreach. The NN/LM's Evaluation Resource Center has
    provided evaluation training opportunities to all RMLs, and at
    several medical librarian meetings. NLM encourages all RMLs to have
    training for key staff in conducting program and project evaluation.
    And NN/LM funded outreach projects are encouraged or required to
    include an evaluation component within their projects. Further, over
    the years, the NLM and NN/LM have held special symposia designed to
    share best practices, challenges, and lessons learned with respect
    to outreach to specific groups or populations, including the
    underserved, and the evaluation of such outreach. These symposia and
    NN/LM-funded outreach projects have resulted in numerous articles
    published in the *Journal of the Medical Library Association* and
    elsewhere. The panel recognizes the importance and value of these
    evaluation-related activities, and believes that continued and
    enhanced NN/LM efforts to measure success and design programs and
    projects based on successful process and outcomes measures will
    continue to pay off, especially as new and improved ways are found
    to share those successes more broadly for the benefit of all health
    information outreach practitioners. The panel also believes that NLM
    should continue to draw on evaluative results and lessons learned by
    other organizations that have related missions, such as the Centers
    for Disease Control and Prevention.

## Recommendations

1.  (MAJOR EXTENSION) Expand the audience and extend the reach of the
    NLM domestically by refocusing the scope and purpose of the existing
    National Network of Libraries of Medicine to include new members
    such as community based organizations, health centers, and other
    broadly defined groups whose purpose or interest include providing
    public access to health information.

2.  (MAJOR EXTENSION) Develop partnerships with U.S. and non-U.S.
    medical libraries ("sister libraries") and create an international
    network of medical libraries (perhaps the World Network of Medical
    Libraries) to reach diverse populations and to expand the resources
    available through MedlinePlus in other languages.

3.  (EASY) Continue to develop methods to assess the information needs
    of users and evaluate health information access, provision, and
    impact as part of domestic outreach programs developed by the NN/LM,
    and international outreach conducted by NLM, in order to encourage
    the development and promulgation of model programs that serve
    underserved populations at home and abroad. Develop a database of
    best practices, lessons learned, and evidence-based practices to
    provide outreach guidance, based on the experience of the NLM,
    NN/LM, and other organizations and agencies with related missions.

4.  Explore the feasibility of offering MedlinePlus in languages other
    than English and Spanish.

# Objective 4: Integrate Disaster and Emergency Response Health Information Locally and Nationally {#objective-4-integrate-disaster-and-emergency-response-health-information-locally-and-nationally .Objective}

## Trends and Issues

For several years, NLM has been giving some attention to support for
disaster and emergency response. Two noteworthy examples include the
WISER service for first responders, and the disaster response health
information project in Central America. Both of these projects are
managed by NLM's Specialized Information Services Division.

WISER stands for Wireless Information Systems for Emergency Responders.
WISER facilitates wireless access to "a wide range of information on
hazardous substances, including substance identification support,
physical characteristics, human health information, and containment and
suppression advice." Web-based WISER information can be downloaded via
PDA browsers, including Blackberry, Pocket PC, Palm, and some cell
phones. In essence, WISER is the technology vehicle by which emergency
and first responders can get immediate access to SIS's store of
hazardous, chemical, and environmental information.

SIS also is involved with a disaster and emergency response project in
Central America, an area that has been hit with major storms and
hurricanes in recent years. SIS is a key partner and funder of efforts
to improve the health information infrastructure and disaster
information management in this region. NLM funded CRID (Centro Regional
de Información sobre Desastres) to create, develop and maintain CANDHI
(Central American Network for Disaster and Health Information).
Participating sites are located in Honduras, Nicaragua, El Salvador,
Guatemala, Costa Rica, and Panama. These libraries and information
centers have been strengthened in technology infrastructure (computers
and Internet connectivity), information management, and product
development (digital library, web sites). SIS is currently funding CRID
to develop a Disaster Information Center Toolkit to assist other
interested countries or organizations. The toolkit will be available in
multiple formats including the web and CD-ROM.

NLM's Long Range Plan for 2000-2005 mentioned the need to "emphasize
international partnerships in this hemisphere, including for example the
provision of surveillance, disaster, emergency relief, and toxicological
and environmental health information."[^16] However it was Hurricane
Katrina in 2005 that highlighted the need for all agencies of the U.S.
Government to review how they might contribute to a more effective
emergency response and disaster management in the United States, should
a major, devastating hurricane (or other natural disaster) hit again.

The total response to any disaster involves, of course, much more than
just health information, the primary mission of NLM. However the Katrina
disaster has motivated NLM to take a hard look at how its response, and
that of the Regional Medical Libraries and the National Network of
Libraries of Medicine, might be augmented and upgraded. The key, from
NLM's perspective, is better understanding and conceptualizing the role
of health information at all stages and in all aspects of emergency
response and disaster management. The next step is analyzing how current
health information systems and applications might be modified or
adapted, or new applications developed, to assure that first responders
and emergency managers, and the affected publics, have access to the
health information they need.

## Findings

1.  Various local health and human services organizations, public health
    departments, and (especially) local 211 agencies are currently
    working, mostly independently, to identify, catalog, and make
    available information on the health and human services organizations
    and resources in their local communities that may be relevant to
    emergency response and disaster management, as well as for more
    routine day-to-day purposes. The panel believes that this presents
    NLM with an opportunity to bring its considerable informatics,
    taxonomy, and general organizational skills to assist in
    coordinating and facilitating these information gathering and
    organizing tasks, with special emphasis, post-Katrina, on emergency
    response and disaster management-related health information. To the
    extent that a suitable taxonomy for health and human services
    organizations already exists, NLM should encourage local
    organizations to use it.

2.  NLM is encouraging the formation of Go Locals as an important
    adjunct to MedlinePlus. Go Locals provide information on local
    health care providers and resources in a specific geographic area or
    region. At present, Go Locals rely heavily on volunteers to identify
    and collect web sites of local health services organizations and
    providers. In some states, the interested volunteers are not able to
    find a lead institution to make the long term institutional
    commitment required to sustain the Go Local project. Also, many
    additional health and human services resources, some of which may be
    relevant to emergency response, do not fall within the current scope
    guidelines for Go Locals. Other related organizations, such as 211
    organizations and community information and retrieval services,[^17]
    for example, include a much broader range of resources. The panel
    believes that the post-Katrina environment provides NLM with an
    occasion to review the Go Local concept as it relates to emergency
    response and disaster management-related health information. Scope
    adjustments and revisions may be needed. Also, this is a time when
    NLM could experiment with automated methods for keeping the
    information up-to-date to reduce the burden on volunteers, such as
    developing software that will check for broken links and notify the
    responsible entity that an update is needed, and exploiting
    techniques for harvesting appropriate information from the web sites
    of local resources and organizations in real time so as to reduce
    the dependence on a central database that must be maintained. These
    and other approaches could help make Go Locals more relevant to
    meeting the need for emergency response and disaster management
    information at the local or regional level, when disaster strikes.

3.  The panel notes that the possible inclusion or expansion of
    emergency response and disaster management information is yet
    another addition to the role and responsibilities of librarians.
    Needless to say, the librarian\'s role in providing information
    services to the community is expanding in many parts of the country.
    This is especially the case for public libraries and some hospital
    and medical school libraries. Many are training public health
    workers, working with social service agencies to develop Go Local
    sites, and getting out into the community to address information
    literacy and health information literacy needs. The panel believes
    that the urgent need to address emergency response and disaster
    management needs provides a window for NLM to examine its role in
    supporting and encouraging this transition, including determining
    what can be done to facilitate partnerships between local public
    health and emergency response agencies and public or medical
    libraries, and the optimal role for the RMLs in this process.

4.  The panel believes that NLM's considerable experience in medical
    informatics, telemedicine, and high performance computing can be
    brought to bear in improving the tools and techniques for emergency
    preparedness and response. Advanced informatics techniques,
    including enhanced sensor systems, for example, could be used to
    gather health and human services resources information in real time.
    Also, current or newly developed techniques could be used to monitor
    the performance of Internet connections both real-time and under a
    range of scenarios. Given the availability of this information,
    models could then be developed to simulate a wide range of disaster
    situations to give first responders and other emergency and back up
    personnel simulated experience in developing coping and response
    strategies. This is an opportunity for NLM to contribute on the
    technical as well as the informational side of building a more
    robust emergency response and disaster preparedness infrastructure
    in the United States.

## Recommendations

1.  (FORMATIVE) Expand the role of NLM in the organizing and classifying
    of health and human services information locally and nationally by
    providing an organizational and informational structure for Go
    Locals, 211 groups, emergency preparedness organizations (e.g. Red
    Cross), and charitable social services organizations to share
    information about local health and human services resources and
    organizations, especially as they relate to emergency response and
    preparedness.

2.  (FORMATIVE) Support research on the roles and types of health
    information, and associated health and human services resources and
    organizations, in disasters and emergencies, and help support the
    development of monitoring and modeling tools that simulate a wide
    range of disaster situations and requisite emergency responses, with
    special attention to the health and health information dimensions of
    these simulations, and to the performance of the underlying Internet
    infrastructure and connectivity.

3.  (MAJOR EXTENSION) Provide support and training to medical and public
    libraries and librarians via the NN/LM as they expand their roles as
    community service information providers. This would include but not
    be limited to the provision of health and related information that
    is part of an enhanced library role in emergency response and
    disaster information management.

4.  (EASY) Enhance NLM support for MedlinePlus Go Locals to assure long
    term sustainability and expand the scope of information included in
    Go Local sites, to include emergency response and disaster
    management information, and health information that relates thereto.

# Objective 5: Explore New Medical Information and Informatics Collaboration Models for Developing Regions {#objective-5-explore-new-medical-information-and-informatics-collaboration-models-for-developing-regions .Objective}

## Trends and Issues

Over the last two decades, the world has shrunk even further as a result
of continued globalization of the economy, expanding travel and tourist
activities, and improved media coverage of global issues. One of the
issues receiving heightened attention is global health. The current U.S.
Government administration has realized, as have its predecessors, that
health issues in other countries are America's business both on
humanitarian grounds and on national security grounds. The dire health
conditions in some developing nations are part of the heart-wrenching
scenes of distress broadcast via TV, cable, and the Internet around the
globe. Diseases in one part of the world can quickly spread.

The World Health Organization, Pan American Health Organization, U.S.
Centers for Disease Prevention and Control, and U.S. Department of
Homeland Security are among the many national and international
organizations giving priority attention to global health. At the NIH,
the Fogarty International Center and various individual ICs are involved
in a wide range of international activities on global health and
biomedical research.

As noted under Objective Three of this report, NLM has been
significantly involved in international activities for several decades,
in part through the International MEDLARS Centers and through
participation in international conferences on medical informatics and
medical librarianship. NLM's first Long Range Plan on international
activities, *A Global Vision for the National Library of Medicine*, was
issued in 1998.[^18] NLM's Long Range Plan for 2000-2005 included an
Objective 3.4 to "Promote Development of the Global Health Information
Infrastructure."[^19] And as noted earlier, in recent years NLM has
supported intensive projects in Sub Saharan Africa and Central America
consistent with Objective 3.4 of the current Long Range Plan.

The global health challenges are daunting. No single agency or
organization, whether NLM or any others, could hope to make a major
difference working alone. Partnerships and collaborations are key, and
have been a touchstone of NLM's international work to date. The focus
here is on new or improved methods and models of collaboration that make
sense for NLM, and that leverage NLM's expertise and are realistic
within operable resource and staffing constraints.

## Findings

1.  The US-oriented Woods Hole Medical Informatics week-long training
    program has proven very effective as a "short course" for
    physicians, researchers, and health care providers interested in
    medical informatics. The panel believes that this model could be
    extended to the international medical informatics community. In
    general, short courses can be cost-effective, practical ways to
    provide training.

2.  Based on experience to date, the panel concluded that successful
    short courses include three characteristics: 1) The topics and
    problems addressed are relevant to the students, and the teachers
    have personal experience in those topics; 2) There is a hands-on
    component where students have to work on medical informatics and IT
    systems personally for a significant part of the time; and 3) There
    are specific objectives about what medical informatics knowledge and
    skills the students will acquire and how they will be applied to
    clinical care or public health. Other priorities for effective
    training programs include: (a) medical library and literature search
    skills; (b) instruction on research methods (that is, trainees learn
    a lot about building medical informatics tools, but they also need
    to learn about on how to evaluate the effectiveness and efficacy of
    medical informatics applications for the clinicians who use them;
    and (c) use of data to inform clinical decision-making (medical
    informatics trainees need to learn as well about clinical
    epidemiology and the basic tenets of medical decision making).

3.  The panel determined that the International Medical Informatics
    Association (IMIA) and its constituent informatics organizations,
    including the American Medical Informatics Association (AMIA) and
    its "10x10 Program" (to train 10,000 US health and medical
    informatics personnel by 2010), comprise a useful framework that may
    help build new international collaborations. Such collaborations
    could contribute to building a collective knowledge base, an
    exchange program, a means for obtaining support from additional
    funding partners, and experience with the cost-effective use of
    distance learning technologies.

4.  The panel believes that distance learning can be both efficacious
    and cost-effectives under the right circumstances. The heightened
    concern over global health issues is motivating some public health
    researchers, teachers, providers, and policymakers in the developed
    nations to work more closely with their counterparts in developing
    nations. Due to large distances frequently involved, and the high
    costs of travel, distance learning is being used for a wide range of
    teaching and training purposes. The Web itself has radically
    increased the global availability of public health and personal
    health information in all areas of the world that have adequate
    Internet connectivity. The number and variety of distance learning
    projects and experiments now seems robust enough to warrant a
    summative evaluation of the efficacy and cost-effectiveness of these
    applications, and perhaps preparation of a field manual with lessons
    learned on distance learning in the health realm.

5.  Various international and US organizations, including NLM, have
    recognized the importance of strengthening the biomedical
    information infrastructure in developing countries. This includes
    improvements in the process by which developing country scientists
    conduct biomedical research, prepare articles for peer review,
    submit such papers for publication in national and international
    journals (including regional journals where applicable), and have
    access to such journals either at local or regional libraries and/or
    via the Internet. Library science and training in research and
    publication methods are of great importance in developing countries,
    particularly in Africa. The Web has of course made a significant
    positive impact on the access to medical and research data in any
    site that has Internet access. Even use of Internet cafes has had a
    real impact. HINARI (the open access system for over 2000 medical
    journals in low-income countries) has also been very useful in many
    sites. However skills and training are needed to make good use of
    the improved information access. Development of mentoring
    relationships in biomedical research and librarianship can be
    valuable and seems to be well received. Efforts to improve the
    quality and accessibility of biomedical journals in the developing
    nations redound to the overall benefit of the scientific enterprise
    and global health. The panel cites the current African journal
    program co-sponsored by NLM and NIH as an excellent example of
    capacity-building in this arena.

6.  The panel believes that MLA\'s Librarians Without Borders program,
    and other international medical librarian training programs, offer
    potential collaboration opportunities for NLM. Librarians Without
    Borders is intended to \"Provide information assistance to persons
    responding to epidemics and natural and man-made disasters and
    training in the field of information retrieval and information
    assistance to people anywhere in the world.\" MLA modeled the
    program in part after the Doctors Without Borders program.  The
    first MLA action under this program is to help provide financial
    relief to medical libraries devastated by the hurricanes. 
    Librarians Without Borders will complement MLA's International
    Cooperation Section with library twinning programs where a library
    in the U.S. provides ILLs, resources, etc. to libraries overseas. 
    NLM could identify areas of need for people who are interested in
    these programs and/or develop training models for people to use in
    the field which the MLA could in turn share with members and
    participants. Increased communication between MLA and NLM in these
    areas would also be helpful so each could capitalize on what the
    other is doing.

## Recommendations

1.  (MAJOR EXTENSION) Investigate and participate in the incipient MLA
    Librarians without Borders program and similar initiatives.

2.  (EASY) Partner with the International Medical Informatics
    Association (IMIA) and their constituent organizational members,
    including the American Medical Informatics Association (AMIA), to
    promote informatics research and training in developing countries
    and other underserved areas, convene workshops, and support
    scientific exchange programs in informatics. Distance learning
    methods could be used where proven effective and less costly than
    face-to-face.

3.  (EASY) Support biomedical science publishing and publications, and
    associated library collections, in developing countries, and the
    development of mentoring relationships between developed and
    developing country health informaticians, librarians, and
    scientists.

4.  (EASY) Experiment with the development of a Woods Hole-type of
    training program, and other short courses, that can help to raise
    international medical informatics literacy and practical skills.

# Objective 6: Inspire Americans to Seek Careers and Explore New Information Roles in the Health Sciences and Professions {#objective-6-inspire-americans-to-seek-careers-and-explore-new-information-roles-in-the-health-sciences-and-professions .Objective}

## Trends and Issues

Several trends are currently converging to create a recruitment and
staffing crisis in the health professions, including medical
librarianship. A large percentage of the current health work force is
approaching retirement or within hailing distance. Enrollments in some
of the key health professions are stagnant or even declining. The
demands on health care workers of all types seem to relentlessly
increase. The technical and human challenges of many of these positions
continue to get more complex. And the diversity of the client
populations is ever-increasing.

The need to recruit young Americans into the health professions has
never been greater. The librarian population including the medical
librarian segment is aging, and it is estimated that well over 50% of
library professionals are 45 years of age or older. Medical school
enrollments have declined over the past few years, and the nursing
shortage is well documented. It is predicted that widespread labor
shortages in key health care professions will worsen over the next few
years creating tremendous pressure on hospitals and other providers. An
American Hospital Association report stated that "The health care
workforce is shrinking in relation to the growing demand for
care...unless these very clear trends are reversed, our nation will face
a major health care crisis."[^20] President Bush signed the Nurse
Reinvestment Act (HR3487) in July 2002. The Act is intended to increase
nursing school enrollments by allowing Congress to authorize money for
loan-repayment plans and need-based scholarships for nursing students.

The U.S. population is aging and becoming increasingly diverse,
according to the latest census, with the Hispanic population
experiencing the largest increase. This is increasing the need for more
diversity in the health professions to be able to successfully treat and
care for these populations taking into consideration their age, cultural
and literacy needs.

Over the last several years, NLM has initiated active outreach and
partnerships with Hispanic, Native American, and other minority youth
and student organizations and activities. For example, NLM is supporting
the Knowledge River Program at the University of Arizona in Tucson.
Knowledge River is designed to increase recruitment of Hispanic and
Native Americans into the library profession. And for several years, NLM
has supported the high school peer tutoring project at Med High (magnet
high school) in the Lower Rio Grande Valley of Texas. NLM understands
that the earlier minority youth are exposed to information and knowledge
about health career opportunities, including medical librarianship, the
better the chances that they will take a serious interest.

To further complicate matters, the knowledge base of those in the health
professions has greatly expanded, particularly in the uses of
information technology. On the plus side, this is opening up new
professional roles. For example, the MLS is not the only advanced degree
in libraries today. And it is estimated that 61% of new hires in
1999-2000 were systems librarians or technologists and that number is
only increasing. But this trend has also increased the need for
technical competencies among most librarian career tracks.

In the health information realm, there is an increasing need for
professionals who can help people not only successfully access quality
health information, but understand the health information that they do
find. A survey by the Pew Internet & American Life Project estimated
that 95 million adults 18 and older use the Internet to find an
increasing array of health information. About 80% of Internet users have
searched for health information on the Internet with 66% looking for
information about a specific disease or medical problem and 51% looking
for ways to stay healthy. Unfortunately, only 25% of health information
seekers are evaluating websites completely, looking at the source of the
site and the date of the information.[^21]

NLM has for decades made varied contributions to the medical
librarianship profession. Over the last five years or so, NLM has
supported some outreach projects that centrally involve health
information intermediaries, such as Health Aides or Promotoras, in
helping lay users better understand and use health information from
NLM's online databases.

NLM understands the need for recruitment and retention of a new
generation of medical librarians and health information intermediaries,
drawing from new entries into the job market but also persons shifting
professions in mid-career. It is a challenge much larger than any one
organization can meet. The key is finding the optimal mix of highly
leveraged roles and partnerships that would maximize NLM's contribution.

## Findings

1.  The panel believes that NLM's outreach to youth and minorities to
    date has identified some important lessons learned and future
    directions for continuing and building on this important work. Key
    elements for the future include: developing recruitment models and
    career materials including brochures and posters; developing a best
    practices list from the experiences of successful model programs
    and/or develop an inventory of successful programs; continuing to
    develop NLM's and/or the NN/LM career websites, with links to
    relevant groups and resources; identifying and testing K-12
    interventions such as curriculum development, learning and role
    models, teacher and student training, summer projects, and peer
    tutoring.

2.  The panel concluded that NLM's support of minority internships and
    fellowships, from high school to post-graduate, is a highly
    leveraged way to increase minority representation in medical
    librarianship and related fields. NLM's success to date suggests a
    basis for continuing to collaborate with other sponsoring and
    funding organizations to promote the recruitment and education of
    health professionals, particularly from minority groups.
    Illustrative organizations include the Institute for Museum and
    Library Services which is funding grants to recruit and educate
    minority librarians and library educators, the American Library
    Association's Spectrum Initiative to recruit minorities into the
    library profession, and the Association of American Indian
    Physicians' American Indian Youth Initiative that supports
    internships and training for Indian Youth with an interest in health
    careers. NLM is already involved to some extent with these and
    similar organizations.

3.  The panel believes that the role of medical librarianship is
    changing (e.g., the emergence of the informationist role), and that
    this presents NLM with a new opportunity to constructively
    contribute to the future of the profession. The prospects of success
    are great enough to warrant continued and perhaps enhanced NLM
    funding of internships that focus on new or evolving medical
    librarianship roles, and in general of studies that explore the
    emerging roles of health information professionals, including
    information intermediaries, in the dissemination and interpretation
    of health information by end users.

4.  The panel was impressed that among the information intermediaries,
    Health Care Workers (HCWs) or Aides, including Promotores de Salud
    in Hispanic communities and Health Care Aides in Alaska Native
    villages, are human power available to empower the underserved
    population to receive the best information available to make
    informed health decisions. Health Care Workers are part of the
    community they serve. HCWs are part of the underserved minorities.
    Additionally, these HCWs might decide to pursue a higher level of
    education and career development themselves. They can also be very
    good and effective recruiters. Health Care Workers and Promotores
    can be identified as a basic starting position in a Health Care
    Career: Health Care Worker/Promotor de Salud; Certified Nurse
    Assistant; Licensed Practical Nurse; Registered Nurse; Nurse
    Practitioner. HCW program elements could include, for example:
    training HCW to use Internet-based health information; training HCW
    in basic health librarian skills through Schools of Nursing, Schools
    of Librarianship, Community Colleges, Tribal Colleges,
    Vocational-Technical Schools, and similar, and offering courses
    online and even perhaps a certification; offering training to HCW in
    marketing electronic health information; working with educational
    institutions at all levels to attract more underserved minorities
    into the HCW field.

5.  Promotores de Salud are mainly of Hispanic origin. The panel
    identified numerous opportunities for leveraging the role of
    Promotores de Salud in Hispanic communities, for example: offer HCW
    training in basic Spanish health information, basic interpreting
    skills, and Spanish-language web sites such as MedlinePlus en
    espanol; encouraging the insertion of Promotores de Salud in K-12
    schools with large number of Hispanic minorities and ESOL (English
    as a Second Language) students; involving HCW from the community to
    serve as a role model in schools---with a secondary benefit of
    helping encourage parents and older students to follow a positive
    example and perhaps finish High School and pursue a career in health
    care; partnering with AmeriCorps and Community Health Worker
    programs and create a program for Promotores de Salud through
    AmeriCorps, including worker and supervisor training in Electronic
    Health Information; including information about HCWs/Promotores de
    Salud nationwide on the NLM website and MedlinePlus web site.

6.  With regard to Hispanic and other youth, the panel noted that pilot
    peer tutoring projects have shown good results at a handful of
    magnet health high schools in Texas. Thus far, these projects have
    proven successful in involving high school students proactively as
    health information peer tutors of their student colleagues and in
    outreach to other schools and to the surrounding community. The peer
    tutor projects meet several goals: hands-on education of high school
    students about online health information; development of student
    leadership and teaching skills; effective outreach by students to
    their families and local communities; reinforcement of student
    interest in health-related careers; positive involvement of school
    librarians in mentoring the peer tutors and helping guide the
    process. The peer tutor project concept could be pilot tested at
    additional sites in Texas, and perhaps at select other magnet health
    high schools around the country, and possibly to select science
    magnet high schools that have a strong health or biomedical theme.

## Recommendations

1.  (MAJOR EXTENSION) Continue to work to attract Americans of at least
    high school age and above into a wide range of health professions
    including health informatics and librarianship working in
    partnership with community-based organizations, high school and
    college career librarians, teachers, and counselors, medical groups,
    library associations, and others through career materials, model
    programs, curriculum development, role models, teacher and student
    training, and peer tutoring.

2.  (MAJOR EXTENSION) Continue to pilot test and extend the High School
    Peer Tutor Project to select other magnet health high schools.

3.  (EASY) Continue to participate in efforts to encourage greater
    diversity in the health professions and to fill new outreach roles
    in reaching ESOL, minorities, and other underserved communities and
    reconceptualize health professions and recruitment and training
    (including "pipeline" issues) with greater emphasis on diversity in
    thought, culture, and concepts of health and healing.

4.  (EASY) Monitor and promote emerging health professional roles such
    as the information specialists in context (informationist) who work
    very closely with physicians, researchers, and other health
    providers to organize, access, and filter vital information, or
    information assistants and interpreters who facilitate information
    access by the general public.

5.  (EASY) Develop and strengthen the health information role of
    Promotoras de Salud and other Health Care Workers or Health Aides.

# Objective 7: Help Resolve Digital Divide and Technology Issues {#objective-7-help-resolve-digital-divide-and-technology-issues .Objective}

## Trends and Issues

As noted earlier, the health information revolution has been fueled in
significant part by the World Wide Web built on inexpensive Internet
connectivity. NLM has realized from the outset that the availability of
affordable Internet connections with adequate bandwidth (and
performance) is a necessary (though not sufficient) condition for
meaningful access. In the early days of the Web, dial-up access was
considered the norm, and web applications needed to be geared to perform
well with relatively limited bandwidth and download speeds.

Over the last decade, the performance and geographic coverage of
Internet connectivity has continuously improved and broadened.
Perceptions of what is "normal" have likewise changed. Today, dial-up
connectivity would be considered a limiting factor, as increasingly
users expect to have higher bandwidth connections, at least at the level
of DSL (Digital Subscriber Line). Likewise, as bandwidth increases, web
developers design web sites that have more graphics and complex design
elements and thus necessitate higher bandwidth for fast downloads. It is
something of a chicken or egg situation, as the capacity of Internet
connections and the size and complexity of web sites continue to
challenge each other to get faster and bigger.

For much of the last decade, the concept of the digital divide meant the
difference between those users who still had to depend on dial-up access
versus those users and areas of the country with affordable higher
bandwidth Internet services. Gradually, DSL and cable-based high
bandwidth connections are being made available in all major US
metropolitan areas and, recently, in smaller cities and towns. However,
rural and remote areas are still underserved with higher bandwidth
connections, as are areas with limited phone service and/or with limited
financial means and thus the inability to afford what Internet services
are available. Also, given the inherent complexity of the Internet,
monitoring of Internet performance is needed both to verify service
levels and diagnose and resolve problems.

However providing high bandwidth Internet connections is only an
enabler. This may be potentially the information superhighway, but when
it comes to personal health information, much work is needed to define
the privacy and technical standards and guidelines for transmitting
electronic health records over the Internet and other electronic
pathways. In addition, both public and private health information may
ultimately be available via a multitude of technical changes, from
desktop and laptop computers to personal digital assistants and wireless
cell phones, and from the government, health insurance companies,
disease or condition-specific organizations, public-private
partnerships, and others. Developing the rules of the road for this
degree of complexity is a daunting task. Many groups and organizations
are involved, and no one entity has a lock on this topic. NLM can be a
significant participant in the ongoing research, dialog, and policy
making.

## Findings

1.  The panel has concluded that, as more and more consumer health
    information is available online, and as online access to personal
    health records moves toward realization, assuring the technical
    infrastructure and accompanying public policy to promote equitable
    access to online health information continues to be a major concern.
    The term digital divide is generally used to refer to the disparity
    in access to technology and Internet connectivity that exists across
    demographic groups. Considerable debate continues about the
    persistence of the digital divide.[^22] Because the continued
    existence of digital disparities could lead to differential access
    to health information and contribute to continued or exacerbated
    health disparities, the continued analysis of demographics, such
    race, education, age, income, language, and geographical location,
    as factors affecting access to technology should be monitored along
    a number of dimensions. The ever-changing nature of the digital
    divide, thus the term "rolling digital divide," provides a clear
    justification for consideration of technical and policy options that
    address this rolling digital divide with the goal of helping assure
    the technical infrastructure and connectivity to promote equitable
    access to online consumer health information and online personal
    health records information.

2.  The vision of the world of health information for the NLM Long Range
    Plan for 2006-2016 is of a world in which information (including
    health information) is increasingly digital and increasingly
    multi-media. As digital access becomes even more central to becoming
    informed and educated about health issues, widespread access to
    connectivity becomes an increasingly necessary if not sufficient
    condition for improved health across demographic differences. The
    panel believes that a commitment to the importance of equitable
    digital access should undergird all of NLM's initiatives to the
    underserved. As telecommunications structures shift from analog to
    digital, major societal approaches to equitable access are being
    renegotiated. NLM can play a role in studying these issues and
    developing positions that promote equitable access, and acceptable
    technical performance and connectivity, across demographics and in a
    variety of venues, such as homes, schools, libraries, and
    community-based organizations.

3.  While good summaries of research on the digital divide and its
    relationship to health disparities exist[^23], as research
    continues, the panel believes that it will be important to continue
    to assess the extent to which demographic groups have digital access
    in various venues. While there is the hope that declining costs and
    increased robustness of wireless technology will ensure improved
    access to the underserved both in our country and globally, it is
    essential that this assumption be tested.

4.  The panel concluded that innovative technology, implementation, and
    policy alternatives for bridging the digital divide warrant
    exploration. For example, an illustrative alternative approach to
    universal broadband would be a staged approach to access, where the
    availability of information could be explored through access media
    such as cell phones or PDAs and followed up through health
    information access nodes at libraries, clinics or community-based
    organizations. Resolving the digital divide and any other aspect of
    direct consumer access to health information should be complemented
    with changes in the way health care is delivered. For example,
    rather than simply presenting health information effectively to a
    human reader, it may be more effective to work toward the
    development of intelligent agents that can recommend actions, guided
    by the values, preferences and expectations of the patient and any
    health care clinician involved. See Objective 1 for related
    discussion.

5.  NLM has at least two clear connections to health privacy
    legislation. First, NLM has a long history in medical informatics,
    which is directly related to the technical and policy aspects of
    legislating on electronic medical records. One of the key goals of
    an electronic medical record is to facilitate transportability of
    the record across varied providers and geographic locations. In this
    sense, the electronic medical record is an application of
    telemedicine, generally considered to be included within the medical
    informatics field. Second, some concepts of the electronic medical
    record include direct linkages to online consumer health information
    that is relevant to the health conditions and treatments in a
    specific patient's record. The intent in the latter would be to
    facilitate patient access to not only his or her medical record but
    to consumer health and other related scientific information that is
    germane to the medical conditions or issues in his or her record.
    The panel believes that it is in NLM's interests to participate in
    the dialog and debate on the electronic medical record, and related
    legislation, in order to help assure that any such legislation is
    optimized to meet patient needs for relevant, timely, and
    transportable consumer health information as an adjunct to the
    personal health information that would be included in an electronic
    medical record. Among issues that may need attention would be the
    question of patient access to electronic medical records over public
    Internet systems such as at libraries or Internet cafes that might
    be more vulnerable to privacy and security issues. Another issue is
    the use of personal electronic health information for scientific
    research in ways that protect the privacy and security of
    individuals and their personally-identifiable information.

6.  NLM has significant experience developed over the last decade in
    varied medical informatics and health information outreach
    partnerships with private sector organizations, primarily colleges
    and universities, hospitals, and public libraries but also including
    a range of community-based organizations and some private commercial
    companies. The panel believes that this experience base needs to be
    brought to bear in the ongoing development of the National Health
    Information Infrastructure, which of necessity is a public-private
    partnership. NLM may have valuable insights and lessons learned that
    would be helpful to other government agencies, private companies,
    and other private sector organizations that are involved in the
    burgeoning Health IT sector. These insights and lessons learned
    might ultimately contribute to collaborative development of some
    sort of guidelines and standards for the health information
    infrastructure, which could be very helpful to users and developers,
    public and private.

## Recommendations

1.  (MAJOR EXTENSION) Promote flexibility in modes of digital access to
    health information, for example by cell phone, and PDAs, as well as
    broadband, and the use of intelligent agents, by developing an
    evaluative framework for assessing electronic health information
    access via alternative browsers and decision aids. (Also see
    Objective 1 recommendations.)

2.  (MAJOR EXTENSION) Create new ways to use the digital infrastructure
    to get value-added health information that supports the health of
    the public and underserved groups, for example, emergency alerts and
    chronic care management, direct-to-consumer drug management, and
    customizable health information portals. (Also see Objective 1
    recommendations.)

3.  (MAJOR EXTENSION) Advance the resolution of policy issues such as
    privacy and ethically-balanced public-private partnerships that
    could help in the development of health information infrastructure
    that can minimize the digital divide with regard to health
    information access.

4.  (EASY) Reinforce the importance of equitable access to digital
    technology as necessary for meaningful implementation of electronic
    health information and health records, and contribute as appropriate
    to national policy debates concerning access to the Internet.

5.  (EASY) Monitor and make available "digital divide" research on
    demographics, such as race, education, age, income, language, and
    geographical location, and on Internet performance and connectivity,
    as factors affecting digital access to online health information in
    various venues, such as homes, schools, libraries and
    community-based organizations.

# Panel Roster

**Chair:**

Dr. Louis Sullivan\
Office of the President\
Morehouse School of Medicine\
Atlanta, GA

**Members:**

Dr. Jana Bradley\
Professor and Director\
School of Information Resources and Library Science,\
University of Arizona\
Tucson, AZ

Dr. Patricia Flatley Brennan\
Professor, Departments of Biostatistics and Medical Informatics,
Nursing, and Industrial Engineering\
University of Wisconsin-Madison\
Madison, WI

Dr. Eduardo D. Crespi\
Director & Founder\
Central Latino De Salud Education Y Cultura Center\
Columbia, MO

Dr. Hamish Fraser\
Director of Informatics and Telemedicine\
Partners In Health\
Boston, MA

Ms. Carla Funk\
Executive Director\
Medical Library Association\
Chicago, IL

Ms. Ruth Holst\
Associate Director, Greater Midwest Region\
National Network of Libraries of Medicine\
University of Illinois at Chicago\
Chicago, IL

Ms. Michele Klein-Fedyshin\
Manager of Library Services\
Shadyside Hospital\
Pittsburgh, PA

Prof. Casimir Kulikowski\
Board of Governors Professor of Computer Science\
Rutgers, The State University of New Jersey\
Piscataway, NJ

Dr. Ted Mala\
Director of Tribal Relations\
South Central Foundation\
Anchorage, AK

Dr. Elaine Martin\
Director, Lamar Soutter Library\
University of Massachusetts Medical School\
Worcester, MA

Dr. Ruth Parker\
Professor of Medicine\
Emory University, School of Medicine\
Atlanta, GA

Mr. Wayne Peay\
Director\
Spencer S. Eccles Health Sciences Library University of Utah\
Salt Lake City, UT

Ms. Eugenie Prime\
Director of Corporate Libraries (retired)\
Hewlett-Packard\
Orlando, FL

Dr. Maxine Rockoff\
Director, Division of Information Management\
New York Academy of Medicine\
New York, NY

Dr. William Tierney\
Research Scientist\
Regenstrief Institute\
Indianapolis, IN

[Writing Assistance]{.underline}

Dr. Fred B. Wood\
Office of Health Information Programs Development, NLM

[^1]: See, e.g., National Library of Medicine (U.S.), Board of Regents,
    Long Range Plan, *Improving Health Professionals' Access to
    Information* (Bethesda, MD: Dept of Health and Human Resources,
    National Institutes of Health, August 1989), *A Global Vision for
    the National Library of Medicine* (Bethesda, MD: Dept. of Health and
    Human Services, National Institutes of Health, September 1998),
    *Long Range Plan 2000-2005* (Bethesda, MD: Dept. of Health and Human
    Resources, National Institutes of Health, 2000).

[^2]: National Library of Medicine, *Strategic Plan for Addressing
    Health Disparities 2004-2008*, on the web at
    <http://www.nlm.nih.gov/pubs/nlm_health_disp_2004_2008.html>.

[^3]: For details on the agenda, speakers, and white papers, see
    "Symposium on Community-Based Health Information Outreach," Dec.
    2-3, 2004, on the web at http://medstat.med.utah.edu/symposium/. .

[^4]: For the special JMLA supplement, see Wayne J. Peay and Maxine L.
    Rockoff, eds., "The National Library of Medicine's 2004 'Symposium
    on Community-Based Health Information Outreach,'" *Journal of the
    Medical Library Association*, Vol. 93, No. 4, October 2005
    Supplement. .

[^5]: Institute of Medicine, *Health Literacy: A Prescription to End
    Confusion* (Washington, DC: National Academy Press, April 2004).

[^6]: Williams, Parker, et al, "Inadequate Functional Health Literacy
    Among Patients at Two Public Hospitals," *JAMA*, 1995 Dec 6:274
    (21): 1677-82.

[^7]: DHHS, *Healthy People 2010: Understanding and Improving Health*
    (Washington, DC: U.S. Department of Health and Human Services,
    2000).

[^8]: IOM, *Health Literacy*, op.cit.

[^9]: Ratzan SC and Parker RM, "Introduction," in *National Library of
    Medicine Current Bibliographies in Medicine: Health* Literacy. NLM
    Pub. No. CBM 2000-1. Sedlen CR, Zorn M, Ratzan SC, Lurie N, eds.,
    (Bethesda, MD: National Institutes of Health, U.S. Department of
    Health and Human Services, 2000).

[^10]: Institute of Medicine, *Examining the Health Disparities Research
    Plan of the National Institutes of Health* (Washington, DC: National
    Academy Press, March 2006).

[^11]: National Library of Medicine (U.S.), Board of Regents*, Improving
    Health Professionals' Access to Information* (Bethesda, MD: U.S.
    Dept. of Health and Human Services, National Institutes of Health,
    1989).

[^12]: Outreach Evaluation Resource Center, NN/LM, operated by the
    Pacific Northwest RML, see http://nnlm.gov/evaluation/.

[^13]: See Cathy Burroughs and Fred B. Wood, *Measuring the Difference:
    Guide to Planning and Evaluating Health Information Outreach*
    (Seattle, WA: PN RML/NN/LM and NLM/OHIPD, September 2000), on the
    web at http://nnlm.gov/evaluation/guide/. Also see the three-part
    series of booklets by Cynthia Olney on Community-Based Outreach,
    issued in 2006, and on the web at
    http://nnlm.gov/evaluation/booklets/.

[^14]: National Library of Medicine (U.S.), Board of Regents, *A Global
    Vision for the National Library of Medicine* (Bethesda, MD: US Dept
    of Health and Human Services, National Institutes of Health,
    September 1998).

[^15]: See [www.nlm.nih.gov/mimcom](http://www.nlm.nih.gov/mimcom).

[^16]: National Library of Medicine (U.S.), Board of Regents, *National
    Library of Medicine Long Range Plan 2000-2005* (Bethesda, MD: Dept
    of Health and Human Services, National Institutes of Health, 2000.

[^17]: For examples, see the Alliance of Information and Referral
    Systems, [www.airs.org](http://www.airs.org/).

[^18]: National Library of Medicine (U.S.), Board of Regents, *A Global
    Vision for the National Library of Medicine* (Bethesda, MD: Dept. of
    Health and Human Services, National Institutes of Health, September
    1998).

[^19]: National Library of Medicine (U.S.), Board of Regents, *Long
    Range Plan 2000-2005* (Washington, DC: Dept. of Health and Human
    Services, National Institutes of Health, 2000).

[^20]: American Hospital Association, see
    [www.aha.org](http://www.aha.org/).

[^21]: Pew Internet and American Life Project, see
    [www.pewinternet.org](http://www.pewinternet.org/).

[^22]: See, e.g., "A Nation Offline? Research on the Digital Divide"
    <http://cjtc.ucsc.edu/PowerPoints/Offline_01_unlinked_brownbag_mp.pdf>

[^23]: See Michael C. Gibbons, "A Historical Overview of Health
    Disparities and the Potential of eHealth Solutions," *Journal of
    Medical Internet Research*, <http://www.jmir.org/2005/5/e50/>