AIDS Treatment News
Hundreds Turned Away from
by John S. James
Many scientists, physicians, and people with AIDS will be
unable to attend the "4th Conference on Retroviruses and
Opportunistic Infections" in Washington on January 22-26 --
widely regarded as the most important AIDS research meeting
in the world during 1997 -- due to lack of space at the
meeting site, the Sheraton Washington Hotel. We have learned
from conference staff and others that:
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.
Audio taping is allowed, and tapes of some sessions will be for sale, but audio alone is not enough for slide presentations. As far as we know, no videotape sales nor video feed has been planned. Abstracts of the presentations will be available in print before the meeting, and on the Internet after January 22, at http://www.idsociety.org; however, all but the "late breaker" abstracts are written months in advance and not updated for publication. Video from some of the sessions may be made available on the Internet; we do not know whether it will be possible to read the slides.
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.
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
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
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:
[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.]
Healthcare Communications Group, L.L.C., which develops AIDS-
related medical education programs, will produce The Clinical
Care Options for HIV Daily Online Summaries of the 4th
Conference on Retroviruses and Opportunistic Infections* in
Washington D.C. These one- to two-hour clinically focused
continuing medical education (CME) modules will cover each
day of the Conference from January 23-27, and will be
published online the following morning. They can be taken for
professional credit or used by anyone on the 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
by John S. James
Communicating AIDS information by multimedia and computer is
quickly becoming a current concern. For example, the
Retroviruses conference later this month in Washington,
responding to widespread anger that many hundreds of people
have been excluded, is now planning to provide video of some
of the major talks on the Internet. And the next
International Conference on AIDS, in Geneva, plans "to make
unprecedented use of computers during the conference";
although that meeting is a year and a half away, planning is
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
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 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.
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.
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.
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