AIDS Treatment News
January 3, 1997

Hundreds Turned Away  from 
National Retroviruses Conference 
in January

• About 500 scientists and physicians who tried to register are now on a waiting list, and are unlikely to be able to attend the conference. Many more applied but there is no count, as the additional applications were returned since they would have had no chance to get in through the waiting list. General registration for scientists and physicians opened November 20, and after two to three days both the conference and the waiting list were filled.
  
• An additional 130 people with HIV were turned down, when 150 applied for only 20 "scholarship" slots. Most of the 130 cannot go even if they pay their own way. They will be sent the abstracts book of the conference.
  
• "Financial analysts and venture capitalists" were told they could not register at all.
  
• Many others did not apply because they were told the conference was full.
  
• Some who would certainly have been accepted are out because of some glitch in the application process; when the problem was discovered, it was too late to fix it because the meeting was full.
  

There are widespread concerns that limiting this conference will affect HIV medical care in the coming year, as physicians are unable to discuss the latest findings with the researchers. Also, excluding business analysts may discourage investment in AIDS research, since the analysts cannot see how researchers' work is received by peers.

Unprecedented restrictions on reporting from this meeting are compounding the problems of getting information to the public. Video and still photography are prohibited -- although photographing slides and posters is important to assure that technical reporting is accurate. Industry- sponsored expert panels, which often report to the public on new findings presented at AIDS conferences, have been strongly discouraged at this one.

It has long been clear that there would not be room for everyone who wanted to attend this conference. But the shortage became worse than expected, due to the increasing professional and public interest as a result of the good news on HIV treatment during 1996. With David Ho, M.D., on the cover of the current TIME magazine as Man of the Year (special issue, December 30 and January 6), there will be even more mainstream media interest, since Dr. Ho is giving the opening talk at the conference, "Can HIV Be Eradicated from an Infected Person?" on January 22 at 6:00 p.m. But there is little space for additional reporters, and it would be difficult to find overflow space in the Washington area due to the Presidential inauguration that week. Some fear that the press, attracted to the event but excluded from the information, could spin a dangerously misleading "end of AIDS" story. [Note: Some "mainstream press" reporters can still register, but no later than January 12, and only while slots remain. There will be no onsite registration for anybody. The conference reserved 70 slots for "mainstream press" and 50 for "community press"; all registration categories but mainstream press have now been filled.]

The major reason for the lack of space has been the desire for a small meeting to facilitate scientific exchange, and for a meeting which could be held in a single hotel. Apparently no hotel in the Washington area is large enough for all who want to go. The Retroviruses conference has always been held in Washington, so that government scientists can attend despite lack of funding for travel and accommodations.

Organizational responsibility for the policies and decisions of this conference is unclear. The 4th Conference on Retroviruses and Opportunistic Infections "is an independent conference being held in collaboration with the Infectious Diseases Society of America, the National Institutes of Health, and the Centers for Disease Control and Prevention." There is a Scientific Program Committee of more than 20 leading scientists, but most of them have little or no involvement with meeting arrangements.

According to conference staff, the meeting is funded by registration fees, without government support. Much of the research presented is publicly funded, however.

The Case for a Limited Meeting

Meeting organizers told us they have heard from many basic research scientists that if the meeting is large and open to everyone -- like the International Conference on AIDS, or ICAAC (Interscience Conference on Antimicrobial Agents and Chemotherapy), or the recent AIDS conference in Birmingham, UK -- they will either not attend, or will fly in, give their talks, and fly out. Basic scientists are interested in learning about research opportunities, not in listening to everybody's speeches. And a major purpose of this meeting is to get basic and clinical researchers talking and working together -- certainly one of the most important needs in AIDS research.

Also, basic researchers are less accustomed to industry promotion than clinicians or activists -- and are strongly offended by distortions of the scientific process due to financial pressures.

The conference organizers tell us they have heard repeatedly from scientists attending, both personally and through an annual survey, that they want the meeting kept small "to allow for meaningful scientific interchange (by limiting registration to those actively working in the field)," want to meet in a hotel instead of a convention center, and want the event to remain noncommercial.

AIDS Treatment News has not heard any complaints about an open meeting, except from organizers of the Retroviruses conference. But then researchers who feel that way might not seek us out.

History

Last years' Retroviruses conference, held in the same hotel, also restricted attendance and turned away many people, although apparently far fewer than were excluded this year.

The current conflict began years ago. At the Sixth International Conference on AIDS, June 1990 in San Francisco, there were major demonstrations against the U.S. law excluding persons with HIV from entering the country. Researchers and people with AIDS formed an historic alliance on that issue, and often protested together. But another result was fatigue among some researchers, which contributed to the 1990 decision to cancel the International Conference in odd-numbered years (focusing on national or regional meetings in those years) -- and led also to a yearning for a pure-science conference, from which political and social- issue distractions would be absent.

The Retroviruses conference started in December 1993, partly to replace the International Conference in years it did not occur, and also as a forum for U.S. government researchers to present their findings, as obtaining government funding for international travel for AIDS meetings became increasingly difficult. Since then, the Retroviruses meeting has, in fact although not in name, become the U.S. national AIDS research conference. It has also been seen as the meeting for those who want science only, without social issues, business, media, etc., competing for attention.

Organizers of the 4th Conference on Retroviruses and Opportunistic Infections now believe that they must make an unfortunate choice, between sacrificing scientific exchange, or limiting the meeting and keeping out many people who want to go.

The Real Problem: Two Meetings in One

The central problem now is that the Retroviruses conference has become two different meetings in one -- with two constituencies which have different needs.

It was started as a specialized research meeting to bring together clinical and laboratory scientists. That kind of meeting usually works best if it is small and focused.

But the Retroviruses conference has also become the major source of clinically relevant AIDS treatment research information, at least in those years without an International Conference. For example, the latest results on most or all of the trials of antiretroviral combinations, with protease inhibitors and other drugs, will be presented there. This is information that physicians and patients need -- and much of it will not be available anywhere else for months. Business and financial specialists also need to be at this meeting to understand future directions in AIDS research.

There is already a successful model for how to separate these two sets of needs. Before each International Conference, there is a small, highly technical meeting on HIV resistance. It is not open to all, but we have never heard protests about that -- because the information there is too specialized for most activists, physicians, or business people, because those who do need the information can be invited, and because those who need the more practical research information can come to the large meeting, where the information from the resistance conference is also readily available.

If a limited research meeting is truly needed, it should be held just before the Retroviruses conference, so that invited researchers can attend both with one trip. Then the Retroviruses meeting could be opened to everyone who wants to go.

What Is Needed Now?

The conflict around this conference raises the issue of how to run a scientific meeting well.

The basic model of many large meetings is that research superstars fly around the world giving their speech, often much the same speech as at the last meeting. Hundreds of people, sometimes thousands, file into these presentations, sit in rows, and file out, usually without talking to anyone. There may be a few questions, but there is seldom discussion. It is well known that the chance meetings in the halls are likely to be at least as valuable as the formal presentations announced in the conference program.

For many people these lectures are valuable. Physicians, activists, and reporters tend to be generalists; it is important for us to have some familiarity with a number of areas. Laboratory scientists are often specialists; they need to talk to particular people who are relevant to their work, and are less likely to benefit from large lectures.

We believe that most of the material now delivered in large, impersonal lectures should move to multimedia and the Internet; slide presentations could be ideally conveyed this way. The time and expense of flying thousands of participants around the world for lectures would be eliminated; persons could learn at their convenience; and they could scroll or search ahead in a talk, instead of sitting through the entire presentation. Experts could build "threads" through their own and others' talks, in order to teach important new concepts most effectively. (See "AIDS Conference Information on the Internet -- How to Present It," below.)

There would also be online discussion areas, both open and closed, in which anyone (or certain qualified or invited persons) could discuss the material. This way people can find others who share their interests.

Physical meetings would still occur, but they could be smaller and more focused. They could either be open or restricted, as the organizers wished. There would be little need to restrict meetings, and also little objection to doing so, since they would be highly specialized, and practical AIDS knowledge would be readily available online.

The problem with restricting the Retroviruses meeting is that in the system of communication we have today, many people need to be at that meeting in order to understand what is happening in AIDS research. The next large, general research forum which might deal with the whole range of AIDS research and treatment is ICAAC in late September. The exclusion of many hundreds of people from the Retroviruses meeting is therefore a serious problem.

The major research meeting of the year should at least negotiate before excluding many people who are affected by the epidemic. The Retroviruses conference used a small space to justify exclusion. It would have been unthinkable to arbitrarily limit the number of persons with HIV who wanted to attend for personal information or to inform their communities -- unless each one of them who is admitted means that a researcher or physician cannot get in. A shortage of space makes it defensible to shape the character of a meeting by keeping out whomever one wants to keep out. Obviously we need a better way to organize major AIDS conferences.

Although little has been said publicly, there is much anger behind the scenes, as researchers, physicians, business people, reporters, and persons with HIV find themselves barred from a conference where essential information will be presented. There is concern about long-term damage to working relationships, and also to the morale of professionals and others who have consistently worked hard, but could not get into the central meeting in their field.

We see the following as most important now:

• The conflict around this meeting must not disrupt the event in any way, lest critical information be withheld from the public for months or longer. Most researchers will not release new data through newsletters or the Internet, for example, because medical and scientific journals may then refuse to publish the work, and the researchers would lose their chance for peer-reviewed recognition.
  
• It would be impossible to expand the meeting now to accommodate any substantial fraction of those turned away. But conference organizers still have time to provide videotapes or video feed for those who cannot attend -- or at least to allow people to bring their own cameras. They hope that providing video on the Internet will relieve some of the pressure.
  
• Media coverage could be improved by organizing press conferences where reporters could question certain presenters. Last year there were such press conferences, but too few of them, and they were open only to reporters who had been able to register for the entire Retroviruses meeting. This year there will be more press conferences.
  
• Future Retroviruses conferences need a governing structure which allows discussion and negotiation among the different constituencies affected, especially researchers and physicians (including those not allowed to attend this year), interested business and financial specialists, the press, and persons with HIV. A decision to bar hundreds of people from the most important AIDS research meeting of the year should not be made privately by a handful of organizers who need not answer to anyone.
  

[Note: A consensus letter addressing these concerns is being developed. For more information, contact the Linda Grinberg Foundation, fax 310/471-4565, or phone 310/471-4108; ask for the Retroviruses conference letter, and leave your fax number or mailing address.]

Retroviruses Conference: 
Daily CME Reports Available 
on World Wide Web

This program, similar to one produced in Vancouver last July, will be created by a team of 17 authors and writers, most of whom are researchers or clinicians engaged in clinical trials or direct care of persons who are HIV positive. It is sponsored through unrestricted educational grants from five pharmaceutical companies, under ACCME guidelines to assure that sponsors do not influence the content of the courses.

The CME modules will be available through the home page of Healthcare Communications Group, L.L.C., http://www.healthcg.com. Also, pre-conference state-of-the- art summaries on pathogenesis, viral markers, immunomodulation, antiretrovirals, CMV/PCP/HSV/Toxo, MAC/TB, fungal infections, and AIDS-related cancers are scheduled to be posted on this site by January 10.

*This CME program is not sanctioned by nor part of the 4th Conference on Retroviruses and Opportunistic Infections.

AIDS Conference Information 
on the Internet -- 
How to Present It

How can computer communication be most useful? This writer developed computer software in an earlier career, and has long paid attention to what would be needed and useful in AIDS. This article looks at how the information presented in large public conferences could be effectively communicated through the Internet. We have no proprietary interest in the design sketch below, and encourage others to borrow concepts. We have no time to write the software ourselves.

The Big Picture

Today many large conferences bring together hundreds or thousands of people, who often travel great distances. It is widely agreed that at these conferences, chance meetings in the hallways, or other informal private meetings, may be at least as valuable as what is presented in the formal public sessions.

Computer communication can deliver current, in-depth information to those who cannot attend physically, and it can have important advantages over hearing the same material in the lecture hall. Also, it can improve (not replace) the physical meetings, by delivering formal information in advance and shifting the emphasis toward well-informed, private, less formal working sessions at the conferences, to make the best possible use of peoples' valuable time together.

This paper outlines a software design for distributing the FORMAL content of AIDS conferences. We will address informal communication later.

What Happens at AIDS Conferences?

In all the AIDS conferences we have attended in ten years, only three communication formats have been significant: (1) Speech only, either talks by individuals who did not prepare slides, or panel discussions or question/answer sessions, where interaction is unpredictable so it is seldom practical to prepare slides or other visuals in advance; (2) Slide (or overhead) presentations, and (3) Posters. Other formats (such as showing videotapes to an audience, or projecting the contents of a computer screen) have been rare so far.

For speech only (the "talking head"), a transcript alone can be even more useful than being in the room, because reading is faster than talking, because a transcript allows review and scanning forward or backward to find information of interest -- and because it is less graceful to walk out on a speaker than to just start doing something else. Audio and video should be available as options, however -- for people who receive information better by ear than by eye, or for when tone of voice is important, or when the atmosphere of the meeting is significant.

Slide (or overhead projector) talks have presented the biggest problem for conveying information to those not in the room, because most conferences only sell audio tapes, not video, and much of the talk is likely to be lost if the slides are not available. (Some talks use text-only slides which repeat the speaker, or outline main points. These can be quite helpful to the live audience, since information is best conveyed by ear and eye together; but the transcript reader has less need for them. The slides that are vitally important are photographs, charts, graphs, etc., which present additional data not present in the text of the speaker's talk.)

Posters are text and graphics. They can be presented on the Internet with the same software used for talks with slides. This means that the slide presentation is the key challenge for distributing formal conference presentations by computer; text-only talks, and posters, can be handled as special cases of the talk-with-slides format.

Software for Slide Presentations

Video feed does work well for slide presentations -- especially if the camera crew pays attention and shows the slide or a close-up when appropriate, instead of the talking head. We and others have found that it is often possible to get a better view of speakers, panels, and slides from a video monitor set up in the press room or elsewhere in the conference facility, than from being in the session itself, where the seats available may be too far from the screen to read the slides. Another advantage of watching at a monitor is that it is easier to have side meetings or conversations -- the important informal interaction at the conference.

But simply placing video on the Internet is far from ideal. First, transmission usually takes a long time (although file compression software greatly helps).

Even with the "information highway" of the future, when most offices and homes are expected to have high-bandwidth computer communication, straight video feed will still have disadvantages, because of the difficulty in scanning or searching it to find points of interest. (Audio tape is even worse -- as illustrated by an incident in the controversy over the Nixon White House tapes, when the White House staff, after having made years of tape recordings, considered listening to them and realized that it would take years to do so.)

Here is our proposal for software to communicate a slide presentation (or talk only, or poster board) on the Internet. We believe it would be relatively easy to implement.

It seems best not to transmit in real time, but instead to transmit a multimedia file for each lecture or other presentation; the reader/listener (the person viewing or listening to the presentation) can browse the file after it has been transmitted, using the software described. (As mentioned below, there can also be real-time transmission for a "preview" mode, to help reader/listeners decide what presentations they want to view.) This multimedia file will be prepared by editors, who will work from a videotape of the presentation, a copy of the slides, and any prepared transcript which the presenter happens to have available. Therefore, there is no additional burden on the lecturer (usually a busy physician or scientist) who wants to use this format. They do not need to be computer-oriented or to use any equipment or software.

Basic Concept, the Four Windows: Text, Slides, Audio, Video

The software, running on the reader/listener's computer, which does not necessarily need to be online, will provide four viewing channels -- text, slides, audio, and video. All of these channels will be optional; the reader/listener can select which ones to use. Each channel will appear on a different window on the screen; the reader/listener can resize or move the four windows as desired, or close any for channels which are not used for a presentation, or which the information receiver does not care to view.

• The text window will show a transcript of the talk.
  
• The slides window will show any slides used, or other still graphics which are part of the presentation. When the speaker uses a pointer to call attention to one or more parts of a slide, a border such as a thin bright line could be used to mark the areas.
  
• The audio window will control an audio recording of the talk.
  
• The video window will usually just have the "talking head," since the slides or other graphics are available separately in the slides window. In practice, the video window will usually be small -- perhaps a couple inches square -- to reduce the file size and transmission time, and also because the video channel is now the least important of the four channels, since it does not carry additional content, but mainly is used to give a sense of the atmosphere of the room.
  

The four channels must be synchronized. This means, for example, that a reader/listener can quickly browse through the slides -- using the down or up arrow keys to immediately show slides sequentially forward or backward, or using a scroll bar in the slide window to quickly move to any part of the slide sequence -- and then immediately be seeing the corresponding text and video in their respective windows, and hearing the speaker's voice describe the slide selected. Similarly, the reader/listener can jump backward or forward, a little or much, in any of the windows, and the other three windows will immediately be synchronized with the reader/listener's selection. And as the speaker talks, the slides will change automatically, just as they were changed in the original lecture (in the auditorium -- or in front of a video camera in the speaker's office or in a studio, if a lecture is to be provided in advance of the physical conference).

Similarly, a reader/listener could do a computer search for one or more keywords in the text window. Once a hit was found, all four windows would instantly synchronize to that point in the talk, with the speaker's voice saying the words, and the slide which was displayed in the auditorium at that time being shown.

Note that the basic four-windows organization is easy to learn. The user just selects a presentation to see, and automatically it starts going on the computer, with the windows set to reasonable defaults to show the speaker's voice, image, transcripts, and slides. A line at the bottom will tell which keys are active (mainly the up and down arrows to browse through slides or text); users can play with these keys, or with the mouse and scroll bars, and all the windows will immediately synchronize on whatever part of the presentation is selected. An optional control bar will be able to speed up or slow down everything, including the voice and the video.

Optional Search Features

An additional search feature could be a glossary to assist the reader/listener in doing a computer search. The basic glossary would include AIDS-related terminology -- and it would automatically enhance itself temporarily with a scan of the transcript of the talk being viewed. Then, if the reader/listener tries to search for one or more words which were not used at all by the speaker, or otherwise tries a poor search strategy, the text window will show suggested synonyms for each word, allowing the user to enhance the search by accepting some or all of the words suggested by the glossary software.

And of course the reader/listener can always ask for a search backward instead of forward from the current point in the lecture or presentation.

In some cases it will also be possible to search for text in the SLIDES, not just in the transcript. An example would be searching for a drug name used in labels on the slides.

The reader/listener should also be able to search not only within the current presentation, but in all the presentations in a conference -- or in all AIDS presentations in all conferences -- or in certain sections of a conference. The reader/listener should also be able to create a personal RELEVANCE LIST, directing which talks, authors, sections of a conference, or entire conferences, should be searched first. Reader/listeners can create and save any number of such relevance lists -- and can share them with other users, or with the public. Leading virologists, immunologists, or other specialists could contribute relevance lists for public use.

Since relevance lists (and, in fact, all computer searching) are strictly optional, reader/listeners can learn and use the basic software -- the four windows: text, slides, audio, and video -- without ever knowing about these features.

Optional History File

Another optional feature is a history file, which keeps track of everywhere that a reader/listener has been in a session -- by recording the arrival point from every search or scroll, plus the length of time the presentation was allowed to play uninterrupted until the next search. A separate key or mouse click can be used at any time to mark a point of particular interest. With the history file, reader/listeners can quickly return to something they noticed, even if they did not recognize its importance at that time. They can scroll or search through a history file just like they scroll or search through a presentation. History files will automatically be saved forever, always ready for use, unless the reader/listener chooses to obliterate a session, to destroy all record of what they had selected and seen.

Notice that new reader/listeners do not need to know about the history file, but their history will be saved for them anyway, should they ever want to go back and view it.

Another use of history files is to prepare educational modules for the public or others. Teachers or other experts will produce history files to provide guided tours through selected parts of multiple AIDS presentations, to give in- depth looks at particular topics. Teachers can add explanatory material simply by creating their own "presentation" -- a string of explanatory segments one after the other. Then they can thread a history file through their explanations, just as they select segments of any other AIDS talks available.

Ultimately the history files could allow branches, giving the reader/listener control of different options within a presentation.

Note that history files could be transmitted very rapidly to sites which already had the multimedia files for the presentations used. If the receiving site does not have all of the presentation files, the missing segments will be transmitted with the history file.

Implementation Notes

• The video channel, which usually would take the longest to transmit, can be sent much faster because the slide channel eliminates the need for high resolution. The video, now useful only to give a feel for the atmosphere of the presentation, could be displayed in a small "thumbnail" window in a corner of the screen. (Or it could be viewed as a fuzzy picture in a larger window, perhaps appropriate for display to a large lecture-hall audience from an average-size computer screen.)
  
• Text and slides are usually the most important channels by far; audio and video give the speaker's voice and the appearance of the speaker and the room, but little additional technical content. Since the least important channels now take the most bandwidth, transmission could be speeded significantly by choosing not to receive them.
  
• Instead of real-time transmission, this system assumes that, for each presentation, a file is sent for viewing later; otherwise it would be impossible to scroll or search forward, for example. But users should also be able to preview a presentation, to decide if they want to request the full file. Occasionally users might wish to use the preview mode to obtain the whole presentation.
  
• Slides can be transmitted in one of two ways -- either as photographs, or as text and data which can be regenerated into outlines, graphs, or charts when displayed. Text and data can be sent much faster than the photographic image -- and it has the advantage of being searchable. But sometimes photographic transmission is necessary, so this system needs to handle both cases.
  

If this software includes any optional facilities for presenters to create their slides, it should know about color combinations that are easily distinguishable -- including by those with different kinds of color blindness, for example. Also, presenters might be asked to estimate screen size and audience distance. Then a warning could be given before an illegible slide was produced.

• Synchronization of text and slides is easy, simply by having the text contain codes like '(slide #1)'. Synchronization of video and audio is less obvious.
  
• This system should probably be implemented in the Java programming language. Then talks could be viewed on most existing World Wide Web browsers, regardless of what computer platform was used, with little if any need for the reader/listener to obtain and install special software. The software and presentations would also be provided on disk or CD-ROM, for users without Internet access.
  

Summary

Talks, discussions, slide presentations, and posters could be viewed more effectively through multimedia than by being present in the meeting hall, or watching the presentation on videotape. With appropriate software, the same quality of presentation could be efficiently distributed by the Internet or otherwise, and could be available to those who cannot get to the conference and/or do not have Internet access. We propose a design for multimedia software based on four information windows: text, slides, audio, and video.

Distributing information by computer could also improve conferences, by shifting the focus away from large lectures where most people arrive, sit, and leave without speaking to anybody. Instead, they can get the lecture-type information in advance, and arrive prepared for focused working meetings with people they need to see.

Of course the Retroviruses conference should not wait for any new software, but should make video from the conference available through the Internet and otherwise, using the best technology now available. If you know of software to recommend, please contact this writer at AIDS Treatment News.

San Francisco: 
Vocational Counseling Workshops

Copyright 1997 by John S. James. Permission granted for noncommercial reproduction, provided that our address and phone number are included if more than short quotations are used.