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Personal Perspective: Ode to the World Wide Web

Spring 2004

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

I confess. I am an unabashed World Wide Web junkie. I shudder at the thought of how much time I have spent over the years gawking at Web sites dedicated to sex, automotive design and repair, sex, online auctions and shopping (I will never set foot into a store to go Christmas shopping again), sex, and what always claims to be the best bouillabaisse recipe known to man. And those are just for fun.

Where the WWW really matters to me is in all things work-related and, by extension, my life as an HIV-positive person. In short, it has become my information highway to virtually all things happening in the HIV/AIDS research world. With high-speed Internet access and the click of the mouse, I can track down results from a multitude of clinical trials and basic science studies, reams of background information about virtually all diseases that plague the world, and detailed contact information for researchers engaged in HIV/AIDS work just about anywhere. The real challenge is making heads or tails of the information out there, which means weeding through the junk (there's a lot of it) -- passing my favorite muscle bear site along the way, of course -- to find materials that are balanced, contain citations and references, and are clear in their focus and intent. This, however, is easier said than done.

The official birth of the WWW was in 1989, when Tim Berners-Lee at the European Center for High Energy Physics in Geneva set out to develop a way for researchers to "link" to pertinent research documentation using the Internet, born seven years earlier. By 1990, Berners-Lee had developed a rather crude browser program that he named the World Wide Web.

In 1993, Mark Andreessen of the National Center for Supercomputing Applications in Illinois launched Mosaic X, an easy to install and easy to use browser that quickly became a runaway hit. By 1994, tens of thousands of versions had been installed on computers throughout the world. This program contained many of the features that are familiar to Web users today using Netscape -- which is the successor company established by Andreessen to exploit Mosaic X -- and Microsoft's Internet Explorer.

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According to Richard Griffiths, an Internet historian at Leiden University in the Netherlands, there were approximately 3,000 viewable Web sites in 1994. Twelve months later, the number of Web sites had climbed to 25,000. By January 2001, the number of Web sites surpassed 30 million, with the vast majority of them containing multiple indexed pages. In early March 2004, Google -- arguably the most effective Web search engine -- claimed to have indexed 4.2 billion Web pages. If we assume that the average Web site contains 50 pages and that Google has succeeded in indexing two-thirds of the Web's total number of pages, it's not unreasonable to conclude that we're now dealing with approximately one billion Web sites.

I don't recall the first time I accessed the WWW. When I started my work in HIV/AIDS treatment education and advocacy in 1992, first as a writer of the AIDS/HIV Treatment Directory for the American Foundation for AIDS Research (amfAR), research tools as convenient as the World Wide Web were definitely not at my disposal. Research required sifting through voluminous paper files, some six to 12 inches thick, to ferret out documents I needed, mostly copies of articles from the eight or so medical journals we subscribed to. Then there was the travel. Preliminary data from clinical trials were being presented at HIV/AIDS conferences sprouting up all over the world. If we wanted the information immediately -- which was always the case when treatment options were few -- expensive and exhausting travel was the only way to make this happen.

Today, I still rely on the same sources of information I've always relied on. However, millions of abstracts for articles in hundreds of medical journals are now at my fingertips. PubMed, maintained by the National Library of Medicine, contains more than 15 million citations for biomedical articles dating back to the 1950s. PubMed is also great about providing links to the full articles -- which are now archived on the Web sites of various medical journal publishers -- many of which are free. Within seconds, I have access to data reported in tried-and-true journals like AIDS and the New England Journal of Medicine, to some of the more quirky (and never uninteresting) information reported in journals like Ginecologia y Obstetricia de Mexico.

While I still travel to conferences and meetings to catch glimpses of early data from studies that won't likely be published in medical journals for another six months or so, it is a relief to now be able to rely on the suitcase lifestyles of others who remain dedicated to posting the proceedings of these conferences on the Word Wide Web. There is Medscape, which has long been a personal favorite source for conference coverage and more general topic reviews. I've also come to greatly value the extensive conference coverage provided by Jules Levin, through the National AIDS Treatment Advocacy Project (NATAP), and the folks at HIVandhepatitis.com.

If I'm looking to see how the results of a particular clinical trial falls within the "trajectory of knowledge" involving a specific anti-HIV drug or an opportunistic infection, I call upon comprehensive Web sites maintained by amfAR and the U.K.-based AIDSmap. And there is no shortage of expert data-driven commentary on the WWW, ranging from comprehensive reports published by the Treatment Action Group and articles published in GMHC's Treatment Issues, to more basic take-home messages printed in the likes of this publication and one of the Web sites I work for, AIDSmeds.com. And, of course, there is a never-ending supply of review articles, published by medical journals, to help keep things in perspective.

For general overviews of virtually all human diseases that don't require a medical residency to understand, I am partial to information published by e-medicine and the beatified Merck Manual. There's also no beating the cut-and-dry information found in prescription drug package inserts -- for virtually all diseases -- that can be accessed through Web sites maintained by pharmaceutical companies.

This is hardly a detailed review of all the Web sites I visit on a regular basis (apologies, in advance, to friends and colleagues not mentioned here). The point is that there are many Web sites, designed with different goals and aimed at different audiences, containing valuable information regarding the ongoing research -- and evolving management -- of HIV infection. Much like Rebecca Young explains in her review of sources of information, it is important to be aware of where the information comes from and the type of information that is reported. For the work I do, primary sources -- for example, clinical trial results reported in peer-reviewed medical journals, commentary-free data presented at conferences, and prescription drug package inserts -- remain the most important sources of information available to help me understand, for myself, how things have changed (or how they have not). In this way, the sources of information that are most important to me haven't changed in the 12-plus years I have been doing this work. What has changed, fortunately, are the ways I can go about accessing these sources.

Tim Horn is Executive Editor of The PRN Notebook, published by Physicians' Research Network in New York. He is also the head medical writer for AIDSmeds.com.


A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!



  
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This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.
 
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