Saving AIDS Conferences Online: Interview with Sister Mary Elizabeth, Founder of AEGiS
Summary: Some of the most important AIDS conferences are not online, and even the U.S. National Library of Medicine and the conference organizers do not have a paper or electronic copy of the abstracts presented. Some may be lost forever. But they could be saved if a copy can be found, and you might be able to help. Here we interview the founder of AEGIS (www.aegis.org/), the well-known AIDS database that has done critically important work in preserving conferences as well as making AIDS news and other information available around the world.
----------------------------------------
AEGiS (http://www.AEGiS.org/, AIDS Education Global Information System) has provided a huge library of AIDS information free to the world for over 12 years. Just one of its projects puts AIDS conference abstracts online, when no one else has done so. Even in today's computer age some of the scientific presentations at major AIDS meetings may have already been lost to history. After the conference ends, people go home and offices close, and often no one takes responsibility to make sure that the abstracts are online -- and that they are available to major databases such as the U.S. National Library of Medicine, so that future researchers can do one search for their topic of interest (instead of having to search dozens of different conferences separately with different search rules and limitations, which in practice seldom happens).
AEGiS, besides making available AIDS news from sources around the world, has worked with the National Library of Medicine to post missing information on its site, http://www.AEGiS.org, and at NLM. On October 22, 2004, AIDS Treatment News interviewed its founder and director of operations, Sister Mary Elizabeth.
AIDS Treatment News: How long do conferences usually keep scientific or medical abstracts and other conference information online after the meeting ends?
Sister Mary Elizabeth: Our experience here is that conferences could disappear anywhere from six months to three years after being held. It depends on the organization. And many of the conferences never showed up on the Web. So we look around to find people who might have a copy of the abstracts and put them online.
ATN: What is your experience with getting permission to do so?
Mary Elizabeth: Some of the organizations have been extremely cooperative. International Medical Press has given us the file when we asked. Usually it is a flat PDF file, and we go through and extract all the abstracts from it. They have checked back in their records to find some of the older conferences for us and sent them too, with a note giving us permission to archive and distribute them. They have been wonderful to work with.
Others have been less cooperative. With the International AIDS Society, it was hard to get anybody to respond. But then it changed the copyright notice on its Web site, giving permission to reproduce the conferences for non-commercial purposes. That opened the door for us.
And the Retroviruses conference has never responded to any of our letters asking for permission. But these abstracts are available in the National Library of Medicine's AIDSLINE, which we have licensed since the early 90s.
The British HIV Association approached us about carrying their abstracts. These are relatively small conferences, but they put out some very valuable information. They sent us the abstracts of the 10th conference, and we posted those. And when I requested back issues of conferences, they responded almost immediately and sent us the 7th, 8th, and 9th, which we started archiving today.
"ATN: What does AEGiS have that U.S. National Library of Medicine does not?
We have a number of conferences that the National Library of Medicine has not yet added. For example, we have the 8th and 9th European AIDS conference, and the 7th, 8th, 9th, and 10th British HIV Association conferences.
We also added the 4th and 5th International Workshop on Adverse Drug Reactions and Lipodystrophy in HIV. The 6th Lipodystrophy is being loaded this week. Additionally, we have added the 12th and 13th International HIV Drug Resistance Workshops, and the 5th and 6th International Congress Drug Therapy in HIV Infection (Glasgow) conferences. Thomson ACUMED staff are working to get us the 7th conference, scheduled for mid November.
To the best of my knowledge, NLM had not yet incorporated any of these into the NLM Gateway. AEGiS staff is providing them copies of all source files, as well as our finished product, and although I cannot speak for NLM, I believe these meeting abstracts will eventually be incorporated into their database.
I should mention that Lippincott has the copyright on the earlier Glasgow conferences (International Congress on Drug Therapy in HIV Infection). They gave us permission to post the 5th conference, and Rachel Day recently wrote that she had found a copy of number 4. I'm still negotiating on this one.
ATN: Can our readers help find missing conferences? Maybe someone has a printed copy or a CDROM of an early meeting on their shelves, for a conference that is not now available online anywhere in the world.
Mary Elizabeth: Some of the early conferences did distribute printed books, but nobody to my knowledge has them, not even the National Library of Medicine. And the International AIDS Society told me that they do not have some of their earlier conferences, not even a printed copy in their library. Some of these may be lost forever. Or maybe a reader of this article knows where a printed or CDROM copy of one of these conferences can be found.
We are also still hunting for the Glasgow conferences 1, 2, and 3. Sometimes you see a Google reference to these, because there may be a single abstract online, or a mention in an article. Our goal is to find as many of the missing conferences as we can, and get them into the archive where they are available to the world. [See "Missing Conferences List: Can You Find Any of These?" below.]
If anyone reading this has or knows of a copy (print or electronic) of one of these conferences that we might be able to borrow, please call me at AEGiS, 949-248-5843; our hours are 8 a.m. to 4 p.m. Or you could mail us at AEGiS, 32234 Paseo Adelanto, Suite B, San Juan Capistrano, CA 92675-3622. After we find the material we negotiate with the copyright holder for permission to publish it.
ATN: Also, could you explain the problem with the tables in published conference abstracts?
Mary Elizabeth: If you look at the National Library of Medicine's Pub Med or Gateway databases, when the abstract contains data in a table, often there is a note, "See printed abstract." That works if you have access to the printed abstract, but otherwise you are out of luck. Apparently the NLM software does not handle tables well. We put the tables in, making each abstract a separate file in XHTML format, and people can read the tables on AEGiS.
ATN: Also, explain how other Web sites can link to the abstracts on AEGiS, but often not at the U.S. National Library of Medicine. This hurts the dissemination of scientific information, because online journals or other publication cannot link to abstracts that they reference.
Mary Elizabeth: The NLM Gateway [the database that has most of the AIDS conferences] as currently designed does not give you a URL that you can use to link to the abstract. NLM is trying to resolve this problem.
NLM's Pub Med uses a different search engine, and you are able to link to abstracts. But now most of the conference abstracts are no longer included in Pub Med. They were separated out and put into the Gateway.
ATN: How can people help AEGiS? Can you give readers an idea of the budget?
Mary Elizabeth: The whole AEGiS project runs on a little over $200,000 per year, and money is tight, so a contribution matters. Tax-deductible contributions can be made by credit card or check. Just click the Donate Now button on any page at http://www.AEGiS.org/
Fundraising from our users is difficult because people pay to get on the Internet, so they tend to think everything is free or should be free, or that they have already paid for it. They don't tend to give much thought to the expense of maintaining a Web site.
AEGiS is run on a budget that is a fraction of similar Web sites. Although AEGiS receives a number of grants to support its operations, user support is required for financial needs not met by the grants. The bottom line is that AEGiS is often stretched to capacity, in both funding and staff. This often results in publication delays, forcing us to make difficult decisions.
ATN: How many records does AEGiS now have online?
Mary Elizabeth: We have somewhat more than 1.1 million records right now -- abstracts, full-text news articles, journal articles from the AIDS organizations like Gay Men's Health Crisis (http://www.gmhc.org/); HIV i-Base (http://www.i-base.info/) out of the UK, we carry their treatment bulletin; BETA (http://www.sfaf.org/beta/); AIDS Weekly (http://www.newsrx.com/product_descriptions/all_list.htm), which would cost $1500 a year for a subscription, but they graciously allow us to post two major articles of our choice each week, and permanently archive them, going back to around 1995 now. We get AFP (http://www.afp.com/english/home/), which would cost $75,000 a year; they make it available to us in five languages, English, French, German, Spanish, and Portuguese. Reuters and Associated Press would each cost $5,000 a month if AEGiS were paying for them. We have been fortunate to get these in-kind donations.
Some organizations, including
RITA (http://www.centerforaids.org/rita/),
HIV i-Base (http://www.i-base.info/),
AmfAR (http://www.amfar.org/),
CATIE (http://www.catie.ca/e/pubs/), and of course
AIDS Treatment News (http://www.aidsnews.org/) were glad to have us carry their material. Some we had to fight with to get, like BETA many years ago. Then the late Tomas Fabrigas became our advocate on the board, and they finally gave us permission, after a big article in the San Francisco Examiner about the battle.
Some of the early issues of CATIE were mimeographed and did not scan very well, so we had to type them in.
ATN: Where could our readers learn about the history of AEGiS?
Mary Elizabeth: They can probably find more history in the newspaper articles that have been written about us over the years, than from our material. Go into the search engine at http://www.AEGiS.org/ and search for "Sister Mary Elizabeth" (quotes not necessary), and you will get all the articles. There are more than 30 now, all the way back to the time before the Web, when we were a BBS (computer bulletin-board system). You can also find some history in our About AEGiS section.
Our hope has been that archiving some of the old scientific reports, even back from the 1980s on projects that did not pan out, could help future research. Some researcher now may read one of those abstracts or articles and say, "I can see why it failed -- but if they had gone this other route... " opening a whole new chain of investigation. And maybe even finding a cure.
Missing Conferences List -- Can You Find Any of These?
Here are the major AIDS conferences that, as far as we know, do not have their abstracts available online anywhere in the world, and do not have even a paper copy at the U.S. National Library of Medicine, or at the sponsor or publisher that organized the meeting. Probably most of these collections still exist somewhere, on library, university, company, or personal shelves. Others may already have been lost forever.
[Note: The last two, the Lipodystrophy and Resistance workshops, are technically supplements of the journal Antiviral Therapy. But that does not mean they are available. Even if it is called a supplement, often just enough copies are printed to give to those who attend the meeting, and then they are gone.]
If you know of a copy of any conference on this list that AEGiS might be able to borrow, call Sister Mary Elizabeth at 949-248-5843, 8 a.m. to 4 p.m. weekdays Pacific time. Or you could write her at AEGiS, 32234 Paseo Adelanto, Suite B, San Juan Capistrano, CA 92675-3622.
----------------------------------------
Return to home page: www.aidsnews.org
How to help AIDS Treatment News: www.aidsnews.org/canhelp
Copyright 2004 by John S. James. See "Permission to Copy" at: www.aidsnews.org/canhelp