1997 Partnerships for Networked Consumer Health Information Conference

Consumer Health Information: Status Report, 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.