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AIDS Treatment News

Computer Communication for AIDS Agencies -- HandsNet AIDS/HIV


AIDS TREATMENT NEWS Issue #212, December 03, 1994

A new computer communication system, designed for government and nonprofit AIDS agencies, was announced October 31 at the National Skills Building Conference in Atlanta. This project uses HandsNet, already a major tool for electronic communication among nonprofit organizations, for a new project to improve communication and coordination among agencies working in AIDS. About two dozen agencies and organizations have joined so far, including (partial list in alphabetical order): AIDS Action Council, AIDS Project Los Angeles (Sacramento office), AIDS Treatment News, Beth Israel Hospital (Boston), Center for AIDS Prevention Studies, Centers for Disease Control National AIDS Clearinghouse, Funders Concerned about AIDS, Gay Men's Health Crisis, Kaiser Family Foundation, National Minority AIDS Council, Office of the National AIDS Policy Coordinator, Project Inform, Robert Wood Johnson Foundation, San Francisco Black Coalition on AIDS, San Francisco General Hospital AIDS Program, and Upper Midwest AIDS Coalition. Also, 51 Ryan White Special Projects of National Significance (SPNS) have now been funded to come online, and in addition the National Community AIDS Partnership will fund several sites.

Hopefully, "The AIDS/HIV Forum will eventually link thousands of AIDS service organizations throughout the United States with the latest prevention, policy, treatment, funding and resource information. HandsNet will provide support and training to facilitate the flow of information between participating organizations." (Quote from October 31 press release from the Henry J. Kaiser Family Foundation.) The Kaiser Family Foundation funded this project with a $300,000 two-year grant, and Apple Computer provided $50,000 in equipment. This article will outline how the system is used, note its principal strong points and limitations, and examine the controversy over whether this project has unnecessarily duplicated other work.

Background: What is the HandsNet AIDS/HIV Forum? HandsNet is a nonprofit organization which provides a computer communication system designed for human-service agencies, in areas such as housing, education, rural issues, legal services, substance abuse, and other health services. HandsNet has over 3,500 users; and many forums already exist for agencies in various fields, but so far this system has had little use in AIDS. The AIDS/HIV Forum is a new project to improve communication and information flow among AIDS agencies, by providing them with training and technical support to facilitate their use of HandsNet, and to coordinate the development of information resources on that network. What is now being done for AIDS is similar to what has previously been done for other human-service areas.

HandsNet provides electronic mail between its users, who can also send and receive mail to non-HandsNet users on the Internet; it allows users to create their own mailing lists, to automatically distribute email to anyone reachable through the Internet. Also, the various forums (such as the AIDS/HIV Forum) contain public areas in which users can post information. This allows agencies to post action alerts, discuss policy issues, explain their projects, network with people in the same or other fields, etc. And it also means that most of the information in these public areas is contributed by others working on the front lines of the field, increasing its currency and relevance.

Many other systems provide similar email facilities. HandsNet is especially easy to learn to use, because it does an unusually good job of shielding users from computer details which they do not want or need to know about. HandsNet also provides an effective and flexible way of posting information coherently in public areas; and it includes a keyword search to find any reference to a topic of interest, no matter where it was posted.

An important advantage of HandsNet is that it is already heavily used by nonprofit human-service agencies. HandsNet encourages communication across the different interest areas -- for example, between AIDS and other health issues, children and family, housing and community development, hunger and nutrition -- by sending a Weekly Digest (a selection of policy, program, and resource articles posted that week) to all HandsNet members. By scanning this weekly summary -- usually about four single-spaced printed pages in length -- one can learn what is happening now in human- services areas other than one's own, and easily communicate with those involved. (Now that AIDS has a presence on HandsNet, activists in other areas are being exposed to AIDS news and issues they might not otherwise have seen.) John Laird, a former mayor of Santa Cruz, California, who has also served as executive director of the Santa Cruz AIDS Project, has been hired by HandsNet to coordinate the development of the AIDS/HIV Forum.

Individuals can get accounts on HandsNet -- you do not have to be an organization. However, HandsNet is designed for nonprofit agencies; individuals seeking AIDS information by computer will generally find other systems more suited to their needs, and less expensive.

What's On the HandsNet AIDS/HIV Forum? On November 23 we spent about an hour exploring part of the AIDS/HIV Forum. Here are some of the items which caught our attention. Since they included email addresses, the people involved can be reached by electronic mail from HandsNet or from other systems connected to the Internet.

* Background on the AIDS/HIV forum itself, including a list of the 39 people at more than two dozen organizations currently online, and explanations of how to post different kinds of messages in different public areas.

* A Treatment Forum containing the last two years' issues of AIDS TREATMENT NEWS, treatment fact sheets and other information from Project Inform, and other treatment information which is now being prepared and added. "The Treatment Forum will be managed by the National AIDS Treatment Information Project, funded by a Kaiser Family Foundation grant and consisting of staff members from Boston's Beth Israel Hospital, the Gay Men's Health Crisis in New York, and the AIDS Program at San Francisco General Hospital...(It) will be part of a larger national project, which will include the development and distribution of treatment information through a fax-back system as well as these electronic means." * Background on TAN (the Treatment Action Network), Project Inform's "national network of activists who contact elected officials, government administrators and drug companies on critical HIV treatment and research issues." (For more information, call Tom Wonsiewicz, TAN coordinator, at Project Inform, 415/558-8669 ext. 205.) * A Policy Forum, maintained by the AIDS Action Council. It includes advocacy and coalition-building tips for AIDS service organizations and for community-based organizations. It has sections for Budget, Housing, Care, Research & Treatment, Prevention, Women's issues, Ryan White, Civil Rights and Immigration, Federal Agencies, and State Policies. There is a weekly AIDS Action Update, and an Election Update.

* The Republicans' Contract with America. The HandsNet Weekly Digest for November 25 was replaced by a summary of information about the Contract with America which is available on HandsNet. An overview, and four analyses of various aspects, are listed -- as is a December 13 telephone conference on welfare reform. There is a growing concern that "low-income households would be the clear losers, as they would gain little from the Contract's tax proposals and bear most of the burden from the resulting budget cuts." [We also note that people with AIDS, cancer, and other serious diseases are especially affected. Private insurance increasingly finds ways to dump those with serious illnesses onto Medicaid and other public health care, which will be targeted to finance simultaneously huge tax cuts, deficit reduction, and major prison and military spending. Already many people with AIDS -- probably thousands -- have been forced to live on the streets; the new proposals are likely to make things worse.] * The November 19 HandsNet Weekly Digest. It notified readers of a new report on AIDS in New York City -- now the leading cause of death of city residents between the ages of 25 and 44 -- with analysis concerning children, orphans, recent immigrants, and the homeless. Non-AIDS issues include: summer youth employment; new child and family resource centers now being established; where to go with health-care reform, including state programs; the new Congress and housing programs; agriculture worker pesticide protection; domestic violence; expanding free electronic access to government information; substance abuse treatment; and a California guide on how to get food, health, and other services for low- income people.

* The AIDS Daily Summary, written by the U.S. Centers for Disease Control and summarizing AIDS news stories each business day. (This useful service is available on many computer-communication systems.) Here we found references to international press coverage on the new information about the combination of AZT plus 3TC, which will lead us to the original articles. And we learned of a November 21 WALL STREET JOURNAL report that Russia's consideration of a law to test all foreigners entering the country for HIV has caused "a flood of cancellations of trips," with an estimated decrease in tourist and business trips of up to 40 percent if the bill becomes law.

We believe that the HandsNet AIDS/HIV Forum addresses an urgent need for better coordination among AIDS agencies. But in order to be successful, it will need to achieve a critical momentum of use, since new people will join only if those they need to communicate with are already there. Fortunately electronic mail itself is now achieving this momentum in AIDS work, with many, perhaps most, AIDS professionals and activists now having an email address on some system. This makes it easier for HandsNet, since the big initial hurdles of equipment, setup, and training have already been crossed.

HandsNet can be used with either Macintosh, Windows, or MS- DOS compatible computers.

Limitations, Disadvantages * Cost. HandsNet is more expensive than other systems; the minimum fee is $35 per month for one user's account, and most organizations actually spend about $35 to $40. (Organizations with more than one user can get substantial discounts.) Users get two bills: One is from HandsNet, and the other is from CONNECT, the company which provides the computer and software with which HandsNet runs. Cost goes up if one spends more than two hours per month online, or downloads more than about 20 single-spaced pages of information per month. The system is designed to allow users to minimize online time, so the average user's cost is not much more than the minimum.

* Limited Internet access, at least for now. HandsNet users can send and receive email through the Internet; this means they can also subscribe to electronic mailing lists. But they cannot use Internet services such as World Wide Web or Gopher -- let alone set up their own information on these services for other people around the world to use. These Internet services are rapidly becoming more important, and they are available from other vendors for much less than the $35 per month minimum for using the HandsNet system. But it means opening another account, and setting up and learning different software.

HandsNet plans to offer World Wide Web and Gopher access by mid 1995. But at current prices for online time and downloading of information, using the Internet through a HandsNet account would be considerably more expensive than alternatives. If Internet use turns out to be too expensive or otherwise not feasible, then the AIDS community could move onto HandsNet and still end up behind the computer- communication learning curve in two or three years.

* Proprietary software. HandsNet can only be used with CONNECT's proprietary software -- not with the standard terminal programs which most systems use. This can be inconvenient -- for example, when checking one's email while traveling.

Controversy: Duplication of Effort? There has been controversy about the decision by the Kaiser Family Foundation to start a new AIDS communication system, instead of building on the work which had been done before. Many of those familiar with computer communication in AIDS think that the new system should have been built around AEGIS (AIDS Education General Information System) a low-budget international network which is widely considered the best single source of AIDS information for individuals. Sister Mary Elizabeth, who started the AEGIS system, expressed the concerns of many of the AIDS activists who have been using computer communication for years: "HandsNet has received substantial funding to develop services which are otherwise available free of charge. HandsNet and CONNECT will benefit by having more paying customers, but what happens when the two-year Kaiser grant ends? Will the AIDS/HIV Forum continue to offer organized and moderated information and conferencing resources? Or will it be left to volunteer effort to maintain the Forum? "The end result, the quality and accessibility of information, will be largely dependent on the ability of AIDS/HIV Forum organizers to secure ongoing funding to maintain and expand outreach and training, as well as information management. You can bet that HandsNet and CONNECT won't foot the bill. I'm certain John Laird will do a good job, to the best of his ability, but it is a gamble that his position will continue. I don't understand why funds weren't dedicated to further develop existing AIDS information systems which grew out of the grassroots response. These systems have an excellent track record and user base, and operate for much less expense than do commercial and government ventures.

"For less than $20,000 per year, AEGIS makes high-quality AIDS information available through state-of-the-art computer technologies. A $300,000 grant would have gone a long way, for years to come, to further expand our world-wide network and build on our active user base of over 1,500 persons. It would only take $25,000 to develop full Internet access for AEGIS, and $15,000 a year to support it thereafter. Instead of spending $300,000+ over two years for an inferior service, doesn't it make sense to spend that money more wisely by cooperating with existing AIDS information providers to support their ongoing efforts for the coming decade? "How will community access be assured? People who need the information the most don't have the money to subscribe to a commercial system, especially when the free services currently available offer much more comprehensive information in a user-friendly, supportive environment." Comment Computer communication is moving and changing so rapidly that no one can predict what will be most successful. If it had been our choice, we might have chosen the Internet and AEGIS as the basis for an AIDS communication system, instead of HandsNet.

But there are also strong arguments for choosing HandsNet. It has a proven track record in supporting agencies and working groups; AEGIS evolved more for providing AIDS information to individuals. Agencies are usually most interested in policy, program, and funding information, as well as easy-to-learn email and other facilities.

Also, John Laird noted, "The basic points for me are that we are designed to serve AIDS service agencies and provide an across-the-board array of information in an easy-to-use system... One of the strengths of the whole project is the capacity building of AIDS organizations. They are trained as electronic publishers, adding a capability that none presently has... When the grant runs out, this capacity will be what carries the network -- as it is these organizations, not HandsNet, that place the information online. Also, one of the strengths of HandsNet is the ability to provide toll-free support and phone tours to new groups coming online to build their knowledge." HandsNet has a point-and-click "graphical user interface," which many people prefer. AEGIS will soon have a graphical user interface. [Our own view is that if a system is well designed for its users, a graphical interface is a matter of personal preference, not a fundamental advance.] Both HandsNet and AEGIS have excellent keyword search facilities.

Our biggest concern is that the cost of HandsNet, over $400 per year for a single account no matter how little it is used, may limit the AIDS/HIV Forum to better-funded agencies. In theory, this cost can be shifted from other expenses such as overnight express, faxes, and periodical subscriptions. And email uses staff time very efficiently; one just types a message and off it goes, without the need to prepare an envelope, or feed papers through a fax. But local, underfunded agencies that rely mainly on volunteers may not be able to justify the expense this way.

There are now projects in several cities to develop free AIDS computer systems with email and full Internet access. These may become the communication medium for smaller agencies, as well as individuals. If a two-tier system develops, it could increase the problem of well-funded, well-connected agencies and professionals talking mostly to each other, losing contact with the grassroots support they need to be successful.

Computer communication is changing very rapidly, and no one knows which software will prove useful in the future. Therefore, experimentation is necessary; there is no such thing as an ideal choice today. We strongly support both the HandsNet AIDS/HIV Forum, and AEGIS, and other computer communication systems now being used or developed for AIDS work. These are the practical choices today, and no one knows what will ultimately prove best.

For More Information (1) For more information about the HandsNet AIDS/HIV Forum, call John Laird at HandsNet, 408/257-4500. Or send email to him at

(2) For more information about AEGIS, you can log on without prior arrangements by calling its central hub in San Juan Capistrano, California, 714/248-2836 (modem). Or send email to Sister Mary Elizabeth at, or call her at 714/248-5843. AEGIS also has "mirror" systems in a number of other cities, allowing free access with a local call; you can get a current list by logging on to the central system at the number above.

We will not list the many AIDS-related databases offered by AEGIS, because this system deserves an article of its own.

AEGIS has done excellent work with a small budget; we urge those who can to send contributions, which can be mailed to: Sisters of St. Elizabeth, ATTN: AEGIS Network, P.O. Box 184, San Juan Capistrano, CA 92693-0184. Make checks payable to Sisters of St. Elizabeth (tax deductible), with AEGIS in the memo field.

(3) For additional pointers to AIDS information available by computer, see the 14-page "Guide to Selected AIDS-Related Electronic Bulletin Boards and Internet Resources," published by the U.S. CDC National AIDS Clearinghouse. To order a copy, call 800/458-5231; to get through the voicemail, press '1', then '2', then '3' (this may change). Ask for publication number B-313.


Copyright © 1994 -AIDS Treatment News, Publisher. All rights reserved to AIDS Treatment News (ATN), Email AIDS Treatment News .

Information in this article was accurate in December 3, 1994. The state of the art may have changed since the publication date. This material is designed to support, not replace, the relationship that exists between you and your doctor. Always discuss treatment options with a doctor who specializes in treating HIV.