AIDS Information By Computer

Any personal computer which can connect to the telephone lines can open doors to important AIDS information. This article reviews some of the available resources, and discusses their advantages and disadvantages, their cost, and how to use them.

Computers have several advantages for obtaining and sharing AIDS information:

* Location doesn't matter. The smallest towns have the same access as the largest cities.

* Most computer services are very careful to protect the privacy of their users. Some allow you to be anonymous if you want. Most require a name and address for billing, but these services provide information on dozens of topics, not only AIDS, allowing you to be discrete if necessary. And you can obtain the information from the privacy of your home by telephone.

* Computerized information is available around the clock, and you can study it as long as you like.

By contrast, physicians and other AIDS experts may be hard to reach by phone or in person, and then too busy to spend much time. The computer can help you get the background to make conversations with human experts more productive.

* Computerized information can be updated at any time, so it can be kept current. Providers can avoid the delays of
publication, order processing, mailing, etc.

* Many services allow you to leave questions, comments, or other messages for the public.


Disadvantages

Most of these can be overcome by working through support groups or AIDS organizations.

* Costs vary. If you don't have use of a computer already, buying the equipment will probably cost several
hundred dollars or more. Also, some of the most useful information services have one-time sign-up costs, often about
$50., to open an account.

Many of the services cost less than $10. an hour during evenings and weekends, more during the workday. Some are much more expensive, others are free. Most of the services which do charge money can be reached by a local phone call from most cities, avoiding long-distance phone charges. The free services do require that you call long distance if necessary to wherever the computer happens to be.

* Computers are still somewhat difficult to learn how to use. Beginners should have a friend help them get started, or
take a class through adult education or a computer store, or find a consultant.

* The information available varies greatly in quality.


Overview: Three Kinds of Services

Most "online" services -- those which communicate with your home or office computer by telephone -- can be divided
into three classes: information utilities, computer bulletin boards, and research databases.

Information utilities provide large libraries of special- interest material -- from general news to astrology, investment
advice, airline fares, shopping, games, etc. These services usually cost about $8. an hour during the evenings and
weekends.

The best-known information utilities are CompuServe, The Source, and Delphi; by far the best for AIDS information is
Delphi (see below).

Computer bulletin boards, generally run by individuals as a hobby or public service, are usually free. These systems
have been called the first two-way medium of mass communication, as most of the information on them comes from
the users themselves. The two systems named below allow anonymous users to access the system and read information.

Research databases are expensive and technical but by far the most powerful online systems. They allow immediate search through references to millions of published medical articles for any subjects or words you request. In a few minutes from your home or office you can do research which would take hours to do at the best medical libraries.

Important research databases for AIDS information include Medline, DIALOG, and BRS Colleague; see details below.


Specific Services

CAIN (on Delphi): The Computerized AIDS Information Network (CAIN), funded by the California Department of Health
Services, Office of AIDS, will probably be the most valuable general-purpose computerized information resource for most persons and organizations. It has large, diverse collection of good-quality information, costs less than $8. per hour on evenings and weekends, and is one of the easiest computer services to learn how to use.

Information on CAIN includes:

* Selected Associated Press (AP) news stories on AIDS. We checked on April 3, 1987 and found 42 stories, dated March 20 to April 30, covering various aspects of AIDS. These stories often have more information than appears in newspapers, which select and edit the material. (The alternative-treatment stories, incidentally, were generally negative and uninformative -- not the fault of CAIN, but a reflection of the fact that most of the press accepts government and other
institutional statements as its starting point -- at least. And official agencies seldom say that what they have not approved has value.)

* A list of service providers including dental care, insurance and legal resources, antibody test sites, medical and
service organizations, projects and foundations, health departments, mental health services, and religious/spiritual
organizations.

* Reports from the PWA Coalition Newsline, and the California Association of AIDS Agencies.

* Computer bulletin boards on which AIDS organizations and the general public can announce conferences, general news, legislative news, funding available for organizations, help wanted, etc.

* Educational references including a list of AIDS books (92 of them), newsletters, brochures, audio-visual material,
and professional recommendations and policy statements.

* Research information including reports from the U.S. Centers for Disease Control, selected journal articles, etc.

* Electronic-mail communication facilities -- including international electronic mail, perhaps the only fast,
effective, and low-cost means of organizing internationally.

* Names, addresses, and phone numbers of hundreds of AIDS organizations, publications, service providers, and others.

To sign up for CAIN, call Russ Toth or John Stevens at 213-464-7400 ext. 277. Besides the $7.40 per hour cost for
evening or weekend access ($17.40 per hour during prime time), there is a one-time signup fee of $49.95 for California
residents, $61.95 for others; several people can share one account, reducing the one-time costs. (If cost is a problem,
call Russ or John at the number above.) Those who already have an account on Delphi can find CAIN in the Delphi "library" section. CAIN is available internationally, through computer networks.


Computer Bulletin Boards

These small systems, usually free and set up by individuals, allow users to communicate by leaving messages for
each other. Most run 24 hours a day. We don't have a current list of those with AIDS information, but will mention two
examples in San Francisco. Both are free and run 24 hours a day, and both allow anonymous reading.

AIDS Information BBS (415-626-1246) has been run by AIDS organizer Ben Gardiner since July 1985. At any given time it has several dozen messages and short articles, reflecting the interests of its users. A new computer will soon allow a greatly expanded body of information, plus multiple telephone lines.

Newsbase (415-824-8767) specializes in political news and discussion, especially on Latin America. Its AIDS section
keeps this writer's treatment articles in computer-readable form. (I use Newsbase as a central library for distributing
computer-readable copies to those who want them -- such as other online systems, or publications which can receive
computerized articles for automatic typesetting. Anyone else can read the articles in Newsbase, too.)

On both AIDS Information BBS and Newsbase, the software automatically asks new users for a name and address. But the operators don't mind if you use a pseudonym and dummy address in order to preserve anonymity.

Other computer bulletin boards also have AIDS information. Bulletin boards come and go frequently, and we don't have a current list of these systems. If you know of any AIDS computer information services, leave messages on AIDS
Information BBS or on Newsbase (phone numbers above) so that others can find out about them.


Research Databases

Medline: Run by the U.S. National Library of Medicine, Medline lets you do instant searches of citations to millions
of articles in published in medical journals. Medline does not have the full text of these articles, but about 40 percent of
the citations do include brief abstracts written by the author. Often the abstract is all you need.

This writer has found Medline immensely useful, but it does have limitations. It usually takes several weeks after
libraries have received the medical journals for citations to appear in the computer, so the most current article will not be
listed. Also, this writer has found that many AIDS articles, probably hundreds of them, have been indexed erroneously and will not be found by a usual search for AIDS -- a serious problem, not generally known, which also affects printed
indexes used in all medical libraries. (One example: the only medical-journal publication on DNCB as an AIDS/ARC treatment, reporting the treatment of 6 AIDS patients and 12 with ARC, was cited in Medline but not indexed under AIDS. Researchers will not find this article by a computer search, unless they know about it in advance. The National Library of Medicine corrected this particular error in the original copy of the database, but the correction has not appeared in some of the Medline versions offered by private database companies.)

You can subscribe to Medline directly through the National Library of Medicine, but it's easier to use it through any of
various other services, such as DIALOG or BRS Colleague.

DIALOG: This online research service allows uniform, systematic access to Medline and over 200 other data bases,
including sciences, nursing, public health, pharmaceuticals, general news, and business and corporate information. It
provides the most extensive database collection anywhere.

Costs are high, but there is no minimum or sign-up fee; except for manuals, training, and a $25. annual account fee,
you pay only for what you use. Medline costs $36. per hour, plus a small charge for each item printed. Most of the other
databases cost $50. to $100. per hour or more. Experienced searchers learn various tricks to keep costs down, and can
often do a search for under $10. New users should take a training class in how to use this system.

For more information, call DIALOG Information Services at 800-3DIALOG.

BRS Colleague: This service, designed for physicians, offers several advantages:

* It includes two database primarily devoted to AIDS -- one from England, and one soon to be available from San
Francisco General Hospital -- as well as Medline and other medical databases. DIALOG does not have the AIDS databases.

* It provides full text of several dozen important medical journals, as well as a number of medical books. Persons
without access to a medical library will find this information particularly useful. And BRS Colleague usually does include
the current articles -- often hard to find in a library, as others are using them.

* BRS Colleague is less expensive than DIALOG, and easier to learn. No training course is required.

Starting a new account costs $95., which includes a manual and free practice time. Medline, the medical journal articles, and most other medical databases cost $20. per hour after 6PM and $32. days; some cost more. The minimum monthly bill is $15. For more information, call the BRS marketing department at 800-468-0908.


Equipment Notes

You should use a 1200 bps modem (telephone interface). The other common speed, 300, is four times slower -- and most databases charge by the hour. Speeds higher than 1200 are available, but not all computer services can use them.

If you don't have any idea what computer to get, three options are a "PC clone" (fully compatible with the IBM PC or
XT); or an Apple Macintosh; or a "lap-top" or other portable with a built-in modem.


Obtaining Medical Articles Or Research Services

DIALOG does not have the full text of articles, and BRS Colleague provides it for only a few dozen of the thousands of
medical journals which exist. What if you need the full article, but do not have access to a medical library?

You can obtain a copy of almost any published article in the world from a research company, such as Information On
Demand in Berkeley, CA (415-644-4500). I have used them for articles so hard to find that no library in California has a
copy. They have sources around the world and never failed to find my articles within a week or two -- usually for $15. to
$20. each.

This company and others can also do the whole research job, for those who would rather pay for the work than get a
computer and do it themselves. These research companies are very careful about confidentiality, as their clients insist on it for many reasons. You can use them from anywhere in the U.S. or abroad, since they work by phone and mail so you don't need to visit their offices. They are expert on information sources but not on AIDS; you must be able to tell them specifically what you want them to find out about.


Conclusion

A personal computer can provide fast, private access to extensive AIDS information, from any locality.

Most groups or individuals could start by using the Computerized AIDS Information Network, and computer bulletin
boards. Those who want in-depth medical research information could subscribed to one of the research databases discussed above. Or they could avoid using a computer, and hire a research company to do the work.