1.
Introduction
1.1 Web
Site Goal
healthfinder.gov
is a
gateway consumer health information Web site from the United States
government. The goal of the Web site is to improve consumer access
to selected health information from government agencies, their many
partner organizations, and other reliable sources that serve the
public interest. healthfinder.gov
also
links to human services organizations and other sectors that can
influence health, such as agriculture, environment, labor, and
transportation.
1.2 Consumer
and Professional Information
The content
of healthfinder.gov
is
structured around organizations, specifically their role as
providers of consumer information on health and health-related
topics. Many of the organizations in healthfinder.gov
offer
both consumer and professional information, so professionals are
finding the Web site a convenient resource for client education and
cross-disciplinary Web browsing. Other organizations are using it as
a Web referral source for information on topics outside their areas
of specialty. Professional-only information resources may be
selected for healthfinder.gov.
1.3 Credible Organizations
In the healthfinder.gov
selection
process, each organization is reviewed to establish its general
reliability and credibility, as well as its ability to respond to
inquiries from the public. Once an organization is selected, its
traditional contact information, direct Internet links (if
available), and an abstract describing the organization and its
information and referral services are entered into the
healthfinder.gov
database.
1.4 Selected
Individual Resources
One or more
of an organization's Web-accessible information resources (Web) also may be selected and abstracted separately, also
with a direct Internet link, to simplify consumer access. Web
resources include individual documents and other information
resources such as news releases, fact sheets, journals, newsletters,
directories, bibliographies, Internet resource lists, databases,
online discussion groups, and health risk assessments. The
organization sponsoring an individual Web resource is identified so
the user has the option of reviewing the source of the information.
Given the frequent changes and crosslinking that are common on the
Internet, healthfinder.gov
cannot verify the accuracy of specific
Web resources.
1.5 Structured
by Topic
The central
feature of healthfinder.gov
is a
searchable topic index supported by the database of abstracts and
links. The index provides user-friendly searching on over 1,000
topics. For the most popular topics, healthfinder.gov
also
assembles frequently asked question documents or guided tours to the
most pertinent organizations and Web resources in the database.
(Agencies represented on the Steering Committee collaborate on
projects that focus on popular topics.) Other resources, such as
health-specific Internet indexes, libraries, commercial health news
media, etc., also are linked from healthfinder.gov
if they
are useful to the average consumer.
1.6 Initial
Selection of Content
The initial
collection of organizations and Web resources for
healthfinder.gov,
as well as the initial topic index or thesaurus, was derived from
two primary sources--the health and human services information and
referral database DIRLINE, maintained by the National Health
Information Center (NHIC), and the existing Web sites of the federal
agencies and other organizations listed in DIRLINE. Through this
approach, the traditional selection processes used by federal
agencies and information clearinghouses to identify appropriate
non-federal referral sources were brought to bear on the selection
of healthfinder.gov
content.
1.7 Federal
Clearinghouse Procedures Used
Since 1979,
information staff at NHIC have identified organizational sources of
health and human services information for use in its public referral
functions, DIRLINE, and publications such as National Health
Observances and Federal Health Information Clearinghouses. Over 50
other federal health and human services information clearinghouses
have similar, time-tested procedures for identifying resources for
inclusion in their own referral databases and publications. The
Steering Committee of healthfinder.gov
also
participated in defining the characteristics of the organizations
and resources that would be included.
1.8 Characteristics
of Organizations Reviewed
The
organizational characteristics commonly assessed in these selection
processes include--
- Nature of
the organization
- Nature of
the information and services offered by the organization
- Indicators
of service area/capacity of the organization to respond to
inquiries
- Quality of
the information and services provided
- Reputation
of the organization in the information and referral community
- Sources of
support
1.9 Selection
Process Adapted to Internet
Since the
launch of healthfinder.gov
in April
1997, the traditional NHIC content selection process has been
adapted to accommodate suggestions received from other federal
agencies, other organizations, and consumers who are using the Web site. The basic considerations outlined in 1.8 above have been
expanded to include a broader range of organization and resource
types, as well as greater consideration of technological barriers to
consumer access. This document represents the consensus of the Steering
Committee on permanent selection criteria and procedures.
2. Oversight
and Management
2.1 HHS-Developed,
Government-wide Service
The healthfinder.gov
Web
site
has been developed by the Department of Health and Human Services (HHS),
in collaboration with other federal agencies. The project is
coordinated by the Office of Disease Prevention and Health Promotion
(ODPHP), with the active participation of a Steering Committee
composed of representatives of the federal agencies whose
information is included in healthfinder.gov
and nonfederal
consumer health information specialists, librarians, and others
actively engaged in the provision or use of online consumer health
information. The online service falls within the larger scope of
HHS's public information activities, and its oversight and
management structure reflects the government-wide nature of the
service.
2.2 Steering Committee
The healthfinder.gov
Steering
Committee meets monthly and provides general guidance for the
development, maintenance, and improvement of the site, including the
topic index or thesaurus. In addition, the Committee is actively
involved in the healthfinder.gov
selection
process. Member agencies may nominate organizations and Web resources; they also are be called upon to participate in the
development of topics or the evaluation of organizations and Web resources that fall within their areas of expertise. The Committee
as a whole reviews all recommendations for additions to and
deletions from the healthfinder.gov
database
and oversees special efforts on popular topics.
2.3 Membership
of the Steering Committee
- A
representative from the consumer health information (CHI) and/or
communication staff of each cooperating federal agency or
service
- A
representative from the Web management staff of each cooperating
federal agency or service
- Nonfederal
CHI specialists, librarians, and others actively engaged in the
provision or use of online consumer health information
2.4 Committee
Chair/Project Manager
The Office of
Disease Prevention and Health Promotion (ODPHP) chairs the Steering
Committee and coordinates the development and management of
healthfinder.gov.
ODPHP staff manage day-to-day operations of healthfinder.gov,
including contractual support through NHIC.
2.5 Contractor Support
Contract
staff at the National Health Information Center (NHIC) provide the
daily support to maintain
healthfinder.gov,
operating in accordance with these policies and procedures. NHIC
staff also identify potential new organizations and Web resources
through monitoring of key Internet information indexes and
announcement sites, and also monitor existing Web sites for
currency, making recommendations for action to ODPHP. NHIC staff
consolidate user feedback from the healthfinder.gov
Web
site
itself and respond directly to routine inquiries from the public.
Weekly summaries of user feedback and all sensitive inquiries are
forwarded to ODPHP for review. The healthfinder.gov
site
indicates that staff cannot respond to all comments and
suggestions, but actual requests for information (as opposed to
comments about the site) are processed by NHIC's existing
information and referral staff.
3. Selection
of Organizations and Web Resources
3.1 Nomination
healthfinder.gov
staff at
NHIC and ODPHP will identify new organizations and Web resources
through established selection procedures. The healthfinder.gov
Web
site
also offers users an opportunity to recommend an organization or
resource for consideration. The Steering Committee, other
collaborating federal staff, and cooperating public and private
organizations may nominate organizations and resources for inclusion
in healthfinder.gov
as well.
Staff from all federal health and human services information
clearinghouses will be invited to review healthfinder.gov
for
content and balance and also to nominate new organizations and Web resources for inclusion.
3.2 Breadth
of the Collection
The range of
organizations and Web resources included in the
healthfinder.gov
collection
must be broad enough to ensure that consumers will perceive the
service to be both useful and unbiased. Because many organizations
produce information for both consumers and professionals, and many
consumers are seeking more detailed information on topics of concern
to them, healthfinder.gov
will
inevitably include both consumer and professionally oriented
information.
3.3 Types
of Organizations Included
healthfinder.gov
will
include organizations providing information and/or referral services
for each topic in the index. These organizations will be selected
primarily from:
(a)
Government and non-commercial organizations, including--
- U.S.
government agencies.
- National
voluntary, nonprofit, and professional organizations,
- Universities,
other educational institutions, and libraries.
- Organizations
partnering with government agencies to provide information to
the public and other public-private partnerships.
- State and
local government agencies offering information services useful
beyond their boundaries.
- Patient
support and advocacy groups, including self-help groups.
- Foundations.
(b) Certain
commercial organizations that offer substantial and free Web resources as a public service, such as--
- Commercial
news Web sites featuring health information news.
- Online
journals and newsletters.
- Large
indexes and bibliographies of information.
- Web
resources or services not available from a government agency,
such as physician or health care facility locators.
Note on
Marketing and Advertising: Both nonprofit and for-profit
organizations selected for healthfinder.gov
should
clearly distinguish between information and services offered at no
or low cost and products and services marketed directly and at a
commercial rate. The presence of advertising will not automatically
disqualify an organization or Web resources ( for example, a
nonprofit might link to a corporate sponsor's Web site, or a
commercial site might feature advertising on its site, but not in
the Web resource specifically selected), but policies regarding
advertising will be considered. Some commercial sites may have
licensed significant content from nonprofit or educational
institutions (Mayo Clinic, National Health Council, and Johns
Hopkins University all have licensing arrangements). Also, any
organization or Web resource will be excluded from healthfinder.gov if its Web
site's presentation or content would lead a reasonable consumer
to infer endorsement of products or services by the U.S. government.
Organizations need not have an Internet presence to be included in
healthfinder.gov;
those with more traditional information and referral activities will
also be included.
3.4 Characteristics
of Organizations Evaluated
The
organizational characteristics assessed in the selection process
include the following. The primary source for evaluation shall be
the published information about the organization (primarily its Web site, since that is what
healthfinder.gov
users
will see) and input from the members of the Steering Committee.
- Nature of
the organization--published information about government,
educational, professional, nonprofit, voluntary, patient support
or advocacy, research, or foundation status will be considered.
- Nature of
the information and services offered by the
organization--publications, telephone hotline or other
counseling, databases, bibliographies, research or clinical
trial information, specific referrals to facilities or providers
of services, financial assistance, technical assistance, support
group activities, membership services, etc. will be considered.
- Indicators
of service area/capacity of the organization to respond to
inquiries--published information about national, state, or local
service; tollfree information services or individual counseling
services; free or low-cost information and services; financial
assistance requirements; membership requirements; stated ability
to respond to information requests, whether via the Internet or
through traditional information and referral service, will be
considered.
- Quality of
the information and services offered by the organization--healthfinder.gov
staff
will review published (primarily the Web site) information from
each organization for general consistency and credibility.
Federal content partners with specific expertise in content
areas will be asked, as part of the general review process, to
undertake a more indepth review. Organizations should provide a
substantial amount of consumer health information as part of
their mission, and that information should be current,
consistent with basic science and recommendations of recognized
authorities, and well-designed. Provision of professional
information is an additional factor. Responses to test inquiries
by telephone and e-mail should be professional. Staff
qualifications relative to information and services provided
should be appropriate, and use of an advisory board will also be
considered. Specific content and/or target audience(s) should be
appropriate for the healthfinder.gov
collection.
- Reputation
of the organization in the information and referral community--healthfinder.gov
staff
will attempt to identify any gaps in this regard. Federal
content partners with specific expertise in content areas will
be asked, as part of the general review process, to undertake a
more indepth review of length of time in operation, reputation
in the information and referral community, direct partnership
and/or referral experience of federal agencies and
clearinghouses with the organization, sponsorship of significant
consumer information or research activities, etc. Identification
of the organization as a resource on federal agency Web sites
will also be considered.
- Sources of
support--published information about grants, membership income
(professional, voluntary, or support/self-help), publication
sales, sponsorship, public-private partnership, government, etc.
will be considered. Sponsorship and advertising policies of
commercial sites will be considered.
3.5 Evolving
Standards for Information Quality on the Internet
Each
organization will be evaluated according to published information
(primarily Web site) as to its adherence to general standards for
quality of health information on the Internet, including clear
identification of sources of information and funding, sponsoring
organizations, staff qualifications, internal review/quality
assurance methodology, and privacy practices, as well as currency
and scientific accuracy. Examples of evolving standards include-
3.6 Accessibility
to the Technologically Disadvantaged and the Disabled
Access to the
Internet and state-of-the-art computer hardware and software are far
from universal. healthfinder.gov
will
consider technological and design factors affecting the
accessibility of organizations' Web sites in the selection process,
with the goal of choosing Web resources accessible to the
healthfinder.gov
target
audience of consumers, new Internet users, and users of public
Internet access points provided by libraries, schools, kiosks,
nonprofit groups, etc. These factors include-
- Network
bandwidth requirements (size of graphics and other files,
including advertising, and effect on speed of access via a
common dial-up connection),
- Compatibility
with older Web browsers and text browsers used in conjunction
with assistive devices to accommodate disabled users as required
by the Americans With Disabilities Act (use of tables, frames,
audio, video, image maps, etc.),
- Ease of
navigation (clarity of design, logic of site flow, search
instructions, etc.), and
- Use of
'cookies' and other tracking technologies that profile users,
which may intimidate new users, raise privacy concerns, and
reduce accessibility from public access facilities.
- Registration
requirements for access.
3.7 Balance
of the Collection
healthfinder.gov
will
include organizations regardless of whether their information and
referral activities are traditional telephone services or Web access
to publications and databases. However, because healthfinder.gov is itself
a Web-based service, consumers' expectations require that
information resources produced by organizations that are selected
for inclusion must be Web-accessible. Also,
healthfinder.gov's
goal is to improve consumer access to information, so balance of
basic introductory information resources and more sophisticated
resources for further exploration will be a consideration. The total
number of Web resources selected for any given topic should be the
minimum number that can present a complete picture of the topic at
the level of detail appropriate for healthfinder.gov's
gateway role; information overload should be avoided.
3.8 Web
Orientation of the Service
Format and
availability will affect healthfinder.gov
selection
of Web resources. Information in the electronic age encompasses much
more than digitized versions of traditional brochures or even
bibliographic databases. The Web permits up-to-the-minute posting of
information about health issues. In addition, the relatively low
cost of publishing information on the Internet permits more
organizations to offer online versions of their publications and
frequently asked questions and answers from their members.
Generally, resources are designed for the Web will be given higher
priority, once basic content needs of consumers are met on a given
topic.
3.9 Types
of Web Resources
Depending
upon the availability of suitable resources, healthfinder.gov
will
select Web resources in the following formats for a given topic:
- An FAQ
(Frequently Asked Questions) or similar resource to provide
quick answers to common questions.
- Digital
brochures, publications, fact sheets, etc. presenting
non-technical information about the topic.
- Topical
news sites and online journals and newsletters.
- Online
databases, both bibliographic and content.
- Internet
indexes or resource lists.
- Listservs
and online discussion, support, and self-help groups.
- Interactive
resources such as online quizzes, electronic public service
announcements, and health risk assessment tools.
3.10 Support
and Self-help Group Issues
healthfinder.gov
selection policy treats support and
self-help groups as organizations subject to the same credibility
evaluation as other organizations nominated for inclusion in
healthfinder.gov.
Patient-run organizations should meet all criteria for inclusion;
special attention will be given to the presence of an appropriate
advisory board, moderation of online discussion activity by a
trained professional, and use of disclaimers concerning medical
advice and consultation with health professionals.
3.10 Online
Discussion Activities
Online
discussion activities such as listservs, patient support and
self-help newsgroups and forums, and 'chat' groups can be selected
as Web resources to which healthfinder.gov
links
directly. As with other selected Web resources, an organization
already selected for healthfinder.gov
must
sponsor the discussion activity. healthfinder.gov
will
highlight such resources only after consultation with a federal
agency in the role of content partner; healthfinder.gov
will
continue to emphasize links to larger, encompassing lists or
networks, directing searchers to them for further information and
referral to smaller resources. Users who visit any selected
organization's Web site may access any discussion activity supported
there. With regard to discussion groups not sponsored by a selected
organization, healthfinder.gov
provides
links to the American SelfHelp Clearinghouse, Mental Health Net,
and other credible online sources that have evaluated such resources
and added them to their own referral pools.
3.11 Keeping
the Collection Current
One of the
challenges for ensuring the credibility of the
healthfinder.gov
Web
service is to maintain the currency of the collection of
organizations and Web resources. This means having the most uptodate
information about organizations and Web resources. NHIC staff will
work with contacts at the cooperating agencies to identify Web resources that are revised or become outdated. In addition,
Web site
management software will be used to regularly analyze the integrity
of the outward links from healthfinder.gov.
Recommended additions and deletions resulting from this activity
will be handled through the same review process as new acquisitions.
3.12 'Sunset Clause'
For healthfinder.gov,
which is a selective rather than an exhaustive collection of
information resources, another aspect of credibility is the
freshness of the selection. Web resources will be selected for healthfinder.gov for a
period of 24 months, and then will be tagged to be dropped or
deselected from the collection unless they have been revised or
updated. Tagged items will be reviewed by NHIC staff before they are
deactivated. Exceptions to this automatic deselection may be items
that are unique or of exceptional merit due to format or content.
Recommended additions and deletions resulting from this activity
will be handled through the same review process as new acquisitions.
3.13 Deselection
All
organizations and Web resources in the
healthfinder.gov
collection
may be recommended for deletion at any time if they do not continue
to meet the general selection guidelines.
3.14 Recommendations
for Deselection
Recommendations
regarding deletion of organizations or Web resources will be
accepted through the same mechanisms as nominations for additions.
4. Review of
Recommended Additions and Deletions
4.1 Basic
Review Steps
All
organizations and Web resources identified or nominated for addition
to the healthfinder.gov
database
and Web site are reviewed first by healthfinder.gov staff at
NHIC for compliance with the selection guidelines above. Existing
resources are verified and updated on a regular schedule. ODPHP
staff oversee this process and approve routine actions. Items that
require additional content review are referred to members of the
Steering Committee whose organizations have responsibilities in the
topic area. Actions are summarized by healthfinder.gov
staff
each week for ODPHP and once a month for the Steering Committee.
4.2 Levels of
Review
(a) First
level review. NHIC staff identify organizations and Web resources
that clearly comply with selection guidelines and are similar to
those in the initial collection, through their own efforts and
through nominations, and add those items to healthfinder.gov
once the
initial review is completed satisfactorily. These would include
federal offices and services and noncontroversial, noncommercial
private sector resources and services. These additions are reported
weekly to ODPHP and provided to the Steering Committee monthly.
(Routine updates also fall in the first level review.)
Nominations
may be rejected at the first level of review because they fail to
meet the selection criteria-for example, they are (1) primarily
commercial or require membership for access, (2) duplicative of
existing healthfinder.gov
links,
(3) not current, (4) of insufficient quality, (5) present
insufficient evidence of reliability or integrity of the sponsor, or
(6) are technologically inaccessible to a majority of users.
Rejections are included in the weekly reports to ODPHP.
(b) Second
level review. Recommended additions of certain categories of
organizations and Web resources and all proposed deletions are
subject to second level review by ODPHP staff. NHIC staff prepare
recommendations regarding organizations and resources that offer
information that impinges on federal policy, regulations, or
practice guidelines (mammography or dietary guidelines, for example)
and refer them to ODPHP. Second level review is also required for
organizations and resources providing information on topics that
involve several federal offices (such as genetic testing for breast
cancer, which falls within the purviews of the National Cancer
Institute, the Food and Drug Administration, and the Centers for
Disease Control and Prevention). NHIC staff must also refer to ODPHP
all resources of merit that fall outside usual selection criteria
because of size, topic, or collection balance, as well as all
recommended deletions.
ODPHP reviews
the nominated resources; those that ODPHP determines do not require
prior review by the Steering Committee are acted upon and those that
require additional content analysis are referred to the Steering
Committee members with expertise in the topic or other identified
content partners (third level review). Again, all additions and
deletions are included in the monthly summary provided to the
Steering Committee.
(c) Third
level review. ODPHP staff will refer all sensitive or questionable
potential additions or deletions to Steering Committee members with
topic expertise and/or appropriate content partners for further
review, as necessary.
(d) Web
posting of information for the Steering Committee. Monthly
summaries, agendas, and other information will be posted on a secure
Web page for the Committee, in addition to e-mail and fax
distribution.
5. Notice of
Selection/Request for Update to Organizations
5.1 When
inclusion of an organization or selection of an individual Web resource for
healthfinder.gov is
confirmed by the Steering Committee, an e-mail message (or letter,
if necessary) will be sent to inform the organization. This
communication will include information about healthfinder.gov,
its selection policies (including the 24-month 'sunset' clause), and
HHS's non-endorsement policy, as well as a copy of the database
record or Web page containing the pertinent information. The
organization will be asked to indicate via e-mail or in writing its
(a) approval of the information included in healthfinder.gov
and (b)
its willingness to inform healthfinder.gov
of any
change in the status of the organization or Web resource.
6. Disclaimers
6.1. healthfinder.gov
will
include appropriate disclaimers. The disclaimer currently in use is-
Please
remember that information alone can't take the place of health
care or human services you may need. healthfinder.gov
is an
information and referral service only, and does not diagnose
medical conditions, offer medical advice, or endorse specific
products or services. Also, healthfinder.gov
does
not control the content of the Internet sites or organizations
listed.
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