AIDS Information Obstacles

We who report AIDS research and treatment information cannot help but see how poorly this information gets disseminated -- and how relatively easy it would be to make huge improvements. Obstacles to scientific publishing seriously slow medical research itself, as well as harming efforts to communicate results to physicians and the public. Scientific conferences such as ICAAC (see separate coverage in this issue, and in our previous issue), or the International Conference on AIDS, offer excellent examples of the problems -- but also occasional models for doing things right.

What's Good

Consider some positive models first. At last year's International Conference on AIDS in Yokohama, the most successful reporting of the conference may have been by HIVNet, the AIDS computer organization in the Netherlands. The International Conference encourages speakers at the major meetings to make transcripts of their talks available to the conference press office, which photocopies them and distributes them to the press (but not to other conference participants, nor to the great majority of interested people who cannot fly around the world to go to these meetings). HIVNet had people fax these transcripts to Amsterdam, where they were computerized with a scanner, and then placed online, immediately available everywhere.

ICAAC offers a positive example, in making abstracts of the conference available in advance -- something the International Conference on AIDS has not yet done. Having the abstracts allows participants to plan ahead of time, deciding who they want to meet and what they want to see. But if they do not get the abstracts until registration, they have little time for such planning without missing the conference itself.

The abstracts would be even more useful if they were available ahead of time in computer form. Then one could search thousands of abstracts for topics of interest, to locate knowledgeable doctors and researchers outside of one's own circle who will likely attend the meeting and can be contacted there.

These computerized abstracts should be available in advance on the Internet -- along with whatever transcripts, slides, or other supporting material the presenter wishes to provide. Then this information would be accessible throughout the world, by those who could not come to the meetings as well as those who could. People would still attend conferences for face to face interaction -- which is what justifies the time and expense of getting there. They should not have to make long trips to spend several days sitting in lectures, for material that they could much better receive by computer or by video.

Perhaps fewer people would come to the meetings if they had good advance access to the information to be presented. If so, this would be for the good. An important impediment to AIDS research is the amount of time that researchers spend in planes, airports, and ground transportation, often giving the same talks again and again for years; no wonder so little work gets done. It is wrong to withhold information which could easily be available, just to inflate meeting attendance. Instead, people should have the information in advance, and come to the meetings when they have additional reason for doing so. If the conferences have to be planned on a slightly smaller scale, what is the problem? They are not supposed to be cash cows.

And having the original material accessible everywhere will greatly advance the work the editors and translators who summarize conference information for their particular audiences. At every international conference, one can see people from developing countries who were sent there, at great expense, to get AIDS information and bring it back to their communities. Often they seem lost; they have the abstract book (in English, usually not their language), they have to decide quickly what talks to hear (again, in a foreign language). They may be able to buy audio tapes, but they cannot get into the press room to obtain what transcripts exist (and they do not know that the transcripts are there). Often these people have no working relationship with anyone else at the conference, because they are the only one from their area able to go. They could do their job much better if the information which now goes by on the slides and the posters, and then is lost, were available to them in permanent form, before they left for the meeting -- and if
they could participate in feedback and discussion by email, building professional relationships in advance with others who will attend.

What's Bad

This year's ICAAC in San Francisco illustrated a number of obstacles to AIDS information flow:

* The conference had a new rule this year against photographing the posters or other presentations; we had no advance notice of this change. (Somehow the abstracts and other press materials did not reach San Francisco press registrants in advance, at least not anyone we know; this may have been due to rumors that some local activists, likely to register as press, would disrupt certain corporate booths -- in fact no disruption took place. Other press may have had advance notice of the rule.) Fortunately we took 150 photos before being stopped by the guards; these helped immensely in our reporting for our previous issue. We have never had any researcher at this or any other conference object to our photographing their presentation. (There is a totally appropriate objection to flash photography when slides are being shown. This is not a problem, as persons familiar with photography would not use flash when photographing slides on a screen.)

We talked to staff and learned that the reason for the rule was fear that scientific rivals would steal data; since the presentations had not been formally published, it might be hard to prove priority of authorship. Note that this issue would be moot if the information were placed on the Internet or otherwise made available by computer, since proof of priority would then be established. Photography is only a poor stopgap; officially computerized information would be far more complete and useful.

* Another problem at ICAAC is that many sessions are not made available on audiotape merely because one of the presenters did not sign the required release form. This kills the only public record not only of their talk, but of everyone else who happened to speak in that session as well.

Again, this issue would be moot if the conference provided facilities for computerization. No one would be forced to make their talk, slides, or other information available online. But those who wanted to do so would not be stopped by the few who did not want a public record of their public talk, or who forgot to send in the release form.

* This year, for the first time at ICAAC, the conference abstracts were available in searchable form on disk at the meeting itself, courtesy of Merck & Co. But not for press. Fortunately, we got our copy just as the Merck booth opened, before either we or the staff at the booth knew about this rule. But many others were turned away.

* A minor problem, but one that conference participants should know about, is that due to a glitch in a new system for producing badges for registrants, persons registered as press were unable to pick up messages left for them on the computerized message system at the conference. If you left a message there for any press person (or AIDS activist), they never got it.

* A much bigger and more fundamental problem is that rejected presentations may never reach the public at all -- or only after great delays. Many rejected abstracts clearly have scientific merit, but are turned down due to lack of meeting space, or as a result of professional rivalries or disagreements.

Then they are likely to wait months for the next AIDS conference, where they also may be rejected (and where they often have to be submitted months in advance, creating further publication delays, and also assuring that the abstracts are already out of date when they are published). Or the work goes to a journal, which usually is even worse. What appears in journals is what scientists were discussing two or more years ago. At least at conferences, the speech or the poster can include up-to-date material.

What should be done? In a future article, we will propose a computerized system of "smart peer review." This will allow scientists to release their work to the public immediately, but still have it peer reviewed and modified. And the users of this online journal (which also could be called a computer conference) will have the ultimate decision; they will be able to accept or reject peer review -- or to choose their own kind of peer review as a custom filter through which to view published material. We will show that this system works economically, since professional journals seldom pay their authors or reviewers. Credit for peer-reviewed publication is their draw -- and this can be provided in a much more flexible way, without the intolerable drawbacks imposed by journals today.