combined health information database

Attachment A

SELECTED ON-GOING FEDERAL ACTIVITIES
====================================

There is a great deal happening throughout the Federal Government to
provide electronic access to information for Americans. The Government
Information Locator Service (GILS) will provide computerized access to
record-based information throughout the Federal Government. The U.S.
Postal Service is establishing the Web Interactive Network of
Government Services (WINGS) program, in which kiosks and personal
computers will provide service options, including Agency-specific
transactions (e.g., requesting forms), government services and
products (e.g., stamps), and life events scenarios (e.g., address
changes, seeking employment, illnesses, births and deaths).

Individual departments and agencies also have initiatives to provide
and disseminate information through various media, including
information searches, CD-ROMs, faxback technology, and print materials
from Federal health information centers and clearinghouses. Electronic
home pages are proliferating as agencies have responded to the growing
use of computers to retrieve information. Agencies in the Department
of Health and Human Services (HHS) are producing consumer health
information products and have mechanisms for cataloging, distributing,
and responding to requests from constituencies. There are many
projects to create electronic products (such as PC disks, CD-ROMs,
audiotapes, and videos) and electronic retrieval systems.

Consumers need a single, well-publicized point of entry with
navigation tools that can effectively maneuver through the maze of
government-generated materials and deliver credible, relevant
information in a timely fashion through a process that is both
transparent and responsive to the user. In addition, the agencies
creating the information need to better leverage their resources by
working together to ensure that information is provided to all
constituency groups, using the most appropriate media, and channels of
communication.

Below are representative examples of consumer health information
projects that some agencies are undertaking:

DEPARTMENT OF HEALTH AND HUMAN SERVICES
---------------------------------------

Office of the Secretary

The HHS Home Page includes a consumer health information page that
links to key resources within the Department.

Office of Disease Prevention and Health Promotion, Office of Public
Health and Science

ODPHP's National Health Information Center is a referral service that
puts health professionals and consumers who have health questions in
touch with those organizations in the public and private sectors that
are best able to provide answers.

The NHIC home page includes a keyword listing of health information
resources by topic, toll-free numbers for health information, federal
health information centers and clearinghouse locations, book listings,
and research periodicals. The NHIC home page was recently named one of
the top five percent web sites by Point Survey. ODPHP also developed
the Put Prevention into Practice home page, to help professionals and
consumers learn about appropriate preventive services.

Agency for Health Care Policy and Research

AHCPR has actively sought cooperative activities over the last 3 years
for electronic dissemination of guidelines because of the superior
ability to search and retrieve data and the speed and
cost-effectiveness of information availability to large audiences.
These efforts include:

A full-text retrieval system, developed with the National Library
of Medicine, that provides free electronic access to clinical
practice guidelines by modem or the Internet, and has thousands of
users each month.

Initial development with the National Technical Information
Service of an electronic bulletin board that has become the
gateway system FEDWORLD and includes a bibliographic database of
AHCPR-funded research.

A prototype CD-ROM that includes all versions of the first 15
clinical practice guidelines for quick searching by the nearly
5,000 members of the national network of medical libraries.

Inclusion of clinical practice guidelines with computerized
patient records in an online system developed by a managed care
organization with a network of 92,000 physicians, 4,300
facilities, in 40 States.

Access to the Quick Reference Guides for Clinicians and Consumer
Versions of guidelines through Physicians Online, a free
computer-based information service available to physician
subscribers.

Consumer Version guidelines and other health information
available through electronic kiosk projects in Walmart stores and
the Retirement Living Forum.

A Fax-back system available 24 hours a day, 7 days a week that
meets immediate demand needs for many AHCPR products,
announcements, solicitations, and reports.

Online databases HSTAR and HSRProject provide access to the
published literature of health services research from AHCPR and
other Federal agencies and to ongoing grants and contracts in
health services research. Both databases were developed
cooperatively with and are made available through the National
Library of Medicine.

AHCPR's Internet Web site includes access to consumer health
information as well as a wide variety of research findings,
clinical guidelines, technology assessments, and data that are
informative to many audiences. A particularly innovative feature
of the site is the capability for ordering AHCPR documents online
directly from the AHCPR Clearinghouse.

Centers for Disease Control and Prevention

CDC has multiple strategies for making public health information
readily available to consumers. They include:

Hotlines - CDC operates several national hotlines for HIV/AIDS,
sexually transmitted diseases (STD), immunizations, smoking and
health, and occupational diseases and hazards (NIOSH), to answer
consumer questions and inquiries for health related information.

The CDC Voice/Fax Information Service (VIS) - provides callers 24
hour, 365 days a year access to recorded audio information on
hundreds of public health topics ranging from disease specific
information to requirements and recommendations for immunizations
for international travel. The CDC VIS also provides immediate fax-
back of information for consumers who prefer that method.
Currently, the CDC VIS handles over 700,000 calls per year and
sends over 1.2 million pages of faxed information.

Clearinghouse - CDC operates the National AIDS Clearinghouse
primarily to provide written materials to consumers on HIV/AIDS
information. Moreover, the Clearinghouse has made information
available online through the Internet.

Public Inquiries - CDC operates a public inquiries function that
receives consumer questions via various channels, including
telephones, U.S. mail, and electronic mail. Public inquiries fill
the requests for information or route the requests to the
appropriate internal or external source of relevant knowledge and
information.

Internet Services - CDC provides a wealth of public health
information and public use data via the World Wide Web(WWW), FTP,
gopher and listserver services. For example, CDC's Morbidity and
Mortality Weekly Report (MMWR) surveillance summaries, reports and
recommendations, and other publications are made available
electronically through the WWW. The CDC Prevention Guidelines data
base, a collection of over 400 CDC reports on prevention
recommendations, is also available on the WWW. Currently, CDC's
Web site is accessed over 100,000 times per month with over 13
billion characters of information sent.

Other approaches are also being undertaken to more broadly disseminate
health statistics, including in forms more readily accessible to and
understandable by consumers. The National Center for Health Statistics
is serving as a facilitator for the health component of the Social
Statistics Briefing Room, now featured on the White House home page on
the World Wide Web. This briefing room was established, along with the
Economic Statistics Briefing Room, to provide Internet users with a
centralized location on the Web to find federal statistics. By
visiting these briefing rooms, users can gain direct links to the
specific federal agencies that collect this data. Other categories in
the Social Statistics Briefing Room include crime, demography and
education. The health component will be updated monthly and will
feature six topic areas: vital statistics, use of health services,
prevention and health risks, health status, reportable diseases, and
health care expenditures. The Social Statistics Briefing Room also
includes direct links to the home pages of agencies that are the
source of these indicators; for example, users can directly access the
NCHS home page for further detail on a given topic or for other health
information.

Health Care Financing Administration

HCFA has proposed a five-year Presidential investment aimed at
developing its capacity to communicate more effectively with its huge
and increasingly diverse array of customers. HCFA online is a
comprehensive communication strategy that would allow HCFA to make
full use of the speed and cost effectiveness of emerging information
technologies. The Agency plans to have an interactive 1-800 telephone
system, online access to HCFA information through the Internet,
bulletin boards and Asynchronous Transfer Mode (a technology that
allows voice, data and video to be transmitted over telephone lines).
HCFA plans to possibly have interactive terminals (e.g., kiosks in
shopping malls), cable access programming, CD Rom technologies and
library video and cassette tapes.

At the present time, the public can access a HCFA home page hyper text
line (Web browsers Mosaic and Netscape) from www.whitehouse.gov,www.ssa.gov
, and other Government web servers via facilities shared with the
Social Security Administration (SSA). It should be noted that
globally, the public as well as numerous private institutions have
already been accessing HCFA's Web site, using the commercial online
services such as CompuServe, Prodigy, Genie, MCI, etc. Another web
server (http://www.hcfa.gov ) is directly accessible by the public.
HCFA also has an Internet Bulletin Board which is currently being
accessed nationwide by a variety of government, public and private
institutions and individuals, at a rate of approximately 400
connections per day.

National Institutes of Health

NIH has a World-Wide Web (WWW) site that is linked to the DHHS
site. Many components of NIH have added their WWW pages to the
overall NIH site and many others are under construction.

A prominent feature of the NIH site is consumer health
information. An NIH working group has developed a plan that will
bring together all NIH consumer health information into one area
on our home page. The proposal includes a subject-word search
engine that will enable consumers to find relevant information
across NIH organization lines.

To provide access for those not on the WWW, some of the NIH
institutes are using dial-in electronic Bulletin Board Systems and
gopher servers. NIH's BBSs are linked to NTIS's Fedworld gateway.

Several institutes have set up fax-back information services.

Several NIH institutes participate in Healthtouch, a system of
touch-screen computers available primarily in pharmacies. Users of
this system can select topics and print out the information.
According to Healthtouch, in 1992 consumers printed our
information 20 million times.

The National Institute of Neurological Disorders and Stroke
(NINDS) patient education information is included on computerized
kiosks (in 1200 pharmacies) and on CD ROM disks and in 500
libraries.

Several NIH Institutes were instrumental in establishing the
Combined Health Information Database (CHID), a publicly available
database of health education materials and programs. Fifteen NIH
programs now contribute to the Combined Health Information
Database, which makes information about educational materials and
health education programs available through public, medical, and
university libraries in communities across the country. With more
than 115,000 abstracted entries, CHID is a unique reference source
for health professionals and the public needing to locate health
information.

National Library of Medicine

· Public Library Test Bed at Wheaton Regional Library

The goal of this project is the dissemination of information on AIDS
and toxicology to the public through the Health Information Center at
the Wheaton Regional Library, Montgomery Department of Public
Libraries. The Health information Center (HIC) currently provides
consumer health information services within a public library setting
and serves as a national model for such an activity. This project
allows NLM to use the HIC as a test bed for assessing the utility of
NLM's technical information in AIDS and toxicology to the public and
evaluating different methods of doing this. The project will commence
July 1995 and run for 18 months.

· AIDS Clinical Trials Information Service (ACTIS) & AIDS Treatment
Information Service (ATIS)

These services are both cooperative activities of the Public Health
Service. The AIDS Clinical trials Information Service (ACTIS) is
funded by NIAID, NLM and FDA and managed by the CDC National AIDS
Clearinghouse. This service provides information about AIDS-related
clinical trials to the public, including HIV-infected individuals,
their families and friends, and their care givers. A toll-free
telephone number (1-800-TRIALS-A) allows anyone to call and speak with
a reference specialist to learn about clinical trials for experimental
therapies for HIV infection and related opportunistic diseases. The
AIDSTRIALS and AIDSDRUGS databases on the NLM system are also part of
ACTIS. AIDSTRIALS contains information about ongoing, closed and
completed clinical trials; AIDSDRUGS contains information about the
drugs and other agents being tested in these clinical trials.
AIDSTRIALS and AIDSDRUGS are available free of charge through NLM's
online system.

The AIDS Treatment Information Services (ATIS) consists of a toll free
telephone service (1-800-HIV-0440) and an electronic database. The
ATIS database is a component of NLM's HSTAT (Health Services
Research/Technology Assessment Text) database and contains the full
text of all Federally approved AIDS-related treatment guidelines and
recommendations. Included are the AHCPR guidelines, with its consumer
version, MMWR articles containing recommendations, and an NIH
state-of-the-art statement. HSTAT is available free of charge via
direct dial, telnet, gopher and World Wide Web.

· NLM World Wide Web Server and Gopher Server

NLM's World Wide Web Server (HyperDOC) contains information of use to
consumers as well as to health professionals. It provides simple
access to many fact sheets, reports, and database. Specialized
resources are either available or under development in health services
research, environmental health and AIDS. The same is true of the NLM
gopher service, although different technology is used. These
specialized services not only include NLM information but pointers to
other relevant information that has been selected by Library staff.

Substance Abuse and Mental Health Services Administration

· National Mental Health Services Knowledge Exchange Network KEN

KEN is a national "one-stop" source of free information on a wide
range of mental health services resources, including SAMHSA's Center
for Mental Health Services' (CMHS) single-issue technical assistance
centers; other Federal/State/local resources; advocacy and
professional organizations and clearinghouses; and the CMHS National
"Caring for Every Child's Mental Health: Communities Together"
campaign. The electronic bulletin board can be reached by calling
1-800-790-2647.

In less than a year, thousands of consumers and family members, as
well as providers and policy makers have accessed this user-friendly
gateway to a wide spectrum of national, State and local resources for
mental health services.

Electronic mailboxes are provided on the bulletin board service to
leave messages for CMHS, the KEN, and the systems operator. The Open
Forum feature of the services also allows for questions and answers
and discourse among users. It is constantly updated with current
mental health service information, conferences, funding resources for
States, and guides for consumers to local or State treatment or
support resources for direct services.

· Prevention On-Line (PREVline) - PREVline is an electronic network
dedicated to exchanging ideas and information concerning alcohol,
tobacco and other drug abuse (ATOD) problem prevention. PREVline is a
service of SAMHSA's Center for Substance Abuse Prevention (CSAP).
PREVline is a service of SAMHSA's Center for Substance Abuse
Prevention (CSAP). PREVline includes:

an on-line library of research data, scientific studies, and
other alcohol, tobacco and other drug abuse problem prevention
information;

over 1,000 downloadable files concerning ATOD prevention using a
 variety of protocols at speeds up to 14,400 baud;

access to the publications catalogue of the National
Clearinghouse for Alcohol and Drug Information (NCADI), and
instructions for ordering NCADI materials;

access to information specialists who can answer questions
concerning ATOD problem prevention (email address: info@
prevline.health.org);

access to special information resources on violence (via the
Violence Forum) and substance abuse among women (via the
Prevention Research and Education Management Information System,
or PREMIS);

a public forum where users can post questions and comments;
questions are answered by information specialists and expert staff
at the NCADI; and

e-mail.

PREVline can be accessed through direct dialup at (301) 770-0850
(settings; N-8-1; speed: up to 14400 baud), or through Internet via:

Telnet - ncadi.health.org
FTP - ftp.health.org
Gopher - gopher.health.org
Mosaic - www.health.org

SOCIAL SECURITY ADMINISTRATION
------------------------------

SOCIAL SECURITY ONLINE: A Summary of SSA's Internet Services and
Accomplishments

Public information from the Social Security Administration is now part
of the "information superhighway." Social Security has undertaken
several projects to distribute public materials electronically and to
conduct the business of the agency online.

Social Security Online's Offerings: Social Security has been a
participant on the Internet since 1991, providing statistical data to
educational facilities and other researchers. In December 1993, SSA
established Social Security Online, an Internet site at its Maryland
headquarters to expand electronic distribution of Agency publications
to the public. It is envisioned as a method of improving service
delivery to the growing segment of the population with access to home
PCs and modems. On May 17, 1994, SSA announced Social Security Online
to the world. SSA is offering public information via the Internet in
three common formats:

World-Wide Web -www.ssa.gov

Gopher--gopher.ssa.gov

FTP--ftp.ssa.gov

Currently, Social Security Online maintains approximately 500
documents in the three servers for the public's perusal and download.
The documents include:

over 300 SSA public-use publications;

the Social Security Handbook, completely hyper linked;

statistical data, including Fast Facts About Social Security;

Spanish public information materials;

current legislative news, policy issues and complete text of SSA
Rulings;

actuarial information and the Annual Report to Congress;

information about SSA's videotapes available to the public;

information on international agreements;

a customer feedback and comment form;

two public use forms, the Request for Earnings and Benefit
Estimate Statement and

Application for Social Security Card;

a history of the Social Security Administration; and

frequently-asked questions and answers.

Recent Honors: The May 1995 issue of PC/Computing magazine selected
Social Security Online as one of the "101 Best Net Bets." Editors of
the magazine listed the most interesting and useful" places out of the
"more than 2,000,000 sites on the Internet."

DEPARTMENT OF COMMERCE
----------------------

The City University of New York, in partnership with the New York
Academy of Medicine, the New York Metropolitan Research and Reference
Library Agency's Hospital Library Services Program, and the New York
Public Library, will work with local voluntary health agencies,
support groups, and commercial vendors to demonstrate a consumer
health information network that will serve the residents of New York
City and lower Westchester County, New York. Citizens will be able to
access the network from public workstations located in libraries,
colleges, hospitals and other locations. The network will provide
access to databases on breast cancer, AIDS and other diseases. A
directory of community services, a bulletin board for public health
announcements, a health and drug information library, and other
services will also be available, in both English and Spanish. The
network will be Internet-based. (The project can be seen on the Web at
http://www.noah.cuny.edu/)

Health STAR - A Satellite Delivered Comprehensive School Health
Education Program is designed to provide a comprehensive health
education program to students, teachers, and parents. Mississippi
demonstrates an acute need for improved health education for its
school children. Targeted for students in the fifth and sixth grades,
the project makes use of a valuable existing Mississippi resource: an
extensive STAR Schools Satellite Network already in place in school
districts that serve rural, disadvantaged students.

During year one, Health Star will develop two live, interactive
satellite delivered health programs for students. This age-appropriate
programming will cover the areas of personal health and fitness,
nutrition, prevention of chronic diseases, and accident prevention and
safety. Through this project, instructional materials and staff
development training for the classroom teacher, school administrator,
and other school personnel will also be produced and delivered, in
part via satellite.

DEPARTMENT OF DEFENSE
---------------------

World Wide Web - OASD(HA) posts consumer health information
topics of interest to active duty personnel and beneficiaries for
access via the World-Wide Web. There are currently 28 topics
ranging from a defense practitioner database to Ebola virus
information. The list also includes information regarding on-going
evaluation studies of Persian Gulf veterans.

Consumer Health Information Kiosks - Health information kiosks
currently exist at some medical treatment facilities and various
installation concessions. These kiosks provide information on
health program availability and locations with related parking and
direction information.

Consumer Health Information Hot Lines - DoD has instituted
multiple (1-800) hot lines associated with local medical
facilities. The hotlines provide 24 hour information access to
consumers in three ways: pre-recorded information, retrieval of
information using fax technology, and discussion with a trained
nurse.

America On-Line Chat Group - OASD(HA) posts CHI and actively
participates in America On-Line CHI chat groups.

DEPARTMENT OF EDUCATION

· The Mississippi Educational Network (ETV) and the Mississippi State
Department of Education (SDE) will collaborate to provide
comprehensive health education for every Mississippi student and their
family. An implementation plan is in place for grades 7- 12. Based on
the Comprehensive School Health Curriculum: Linking Health and
Education, the project will provide teaching/learning tools for the
teachers and students of Mississippi in grades K-6. The project
includes television lessons for K-2 students and parents with
accompanying print materials, classroom activity guides for 3-6 grade
teachers, training workshops and teleconferences. All project segments
of will be based on and correlated to the Comprehensive School Health
Curriculum.

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