World Wide Web AIDS Medical Information

During the last several years, current, top-quality medical information has become much more accessible due to widespread use of computer communication. As in other fields, it takes time for people to work out the best ways to use the new tools. This article looks at AIDS World Wide Web sites which are intended primarily for medical professionals, but also are available to anyone.

The most important information online includes:

* Rapid reports from professional conferences. In the past, presenters' abstracts were often printed for participants, but usually the only way someone who did not attend the conference could get a copy was to borrow one from a colleague who did. Now abstracts from many AIDS conferences are available through the World Wide Web, often from the day the conference begins; they can be read or printed from an office or home computer anywhere in the world, usually without charge, any time 24 hours a day. (Conferences would be more productive if the abstracts were made available before the meeting, so that those who attended could be better prepared to use their scarce conference time effectively. But this is still the exception, due to proprietary or competitive habits.)

Another important advance is the detailed summaries from AIDS conferences, often by teams which combine leading research physicians with medical writers. Usually these reports are online within days or weeks of the meeting; some are even written overnight and then available throughout the world the next day.

* Very current standards of care from leading medical centers. For example, the standard of care for HIV disease at Johns Hopkins -- a top research institution which also has extensive practical experience treating thousands of HIV patients in Baltimore -- is now updated monthly online (the printed version, which has long been available, is updated annually). Medical professionals and patients alike can compare the care they are receiving with what Johns Hopkins and other major institutions are doing.

* Research databases, like MEDLINE and AIDSLINE. These have long been available by computer, usually by a dial-up connection -- after an account had been set up, and software obtained and installed. Now these databases and some others can be searched free by anyone, anywhere in the world, who can access the World Wide Web. There is no need to install special software, or to make arrangements in advance -- greatly facilitating access from developing countries, and also allowing near-complete anonymity for anyone who may be concerned about the confidentiality of their inquiries.
[Note: We will focus on research databases in a future article.]

* Full text journals. Some are now online, providing searchable content, reliable access even to current issues which are often hard to find in libraries, and usually an extensive archive. But due to proprietary and marketing concerns, most journals are not online at this time, or are restricted. Some sites provide selected important medical articles, with permission.

* Continuing medical education (CME) courses. Medical professionals can take them for credit, but anyone can use them for their own information and education. The online format usually has the advantages of being freely available to anyone, regardless of status or geography, being available at the most convenient time for each user, and including a test which provides immediate results.

* Clinical trials information, many reference books, directories of services provided by different medical centers, and many other kinds of information, are also available through the World Wide Web. Often the same material can be found in print, or through telephone hotlines (which usually means that an information specialist is using the same database, so that the caller does not need to have research skills nor computer access). Compared to print publications, the online versions are usually more current, and they can be used from anywhere, whether or not a specialized library is nearby.

This article will briefly review some of the major AIDS medical sites on the World Wide Web. There are hundreds of other credible sites we could have included; fortunately, most if not all of them can be reached through one or more links from the sites we have reviewed. If you know of sites not listed below which would be of interest to our readers, let us know; this article is part of a series about online AIDS treatment information, so we can add others later.

Many of the sites listed below include links to the new treatment guidelines (which we reported in AIDS Treatment News #274), and to the research databases of the U.S. National Library of Medicine (which we will describe in a future issue). To avoid repetition, we have often not mentioned these links in discussing the sites below.

We listed links to information about major conferences in a separate section, below.

Note: If you need to type in the World Wide Web addresses (URLs), note that capitalization does matter. Also, note that a few addresses do not include the usual 'www'. And the 'html' which appears in some addresses is using the letter 'l', not the number '1'.

* The Johns Hopkins University AIDS Service Web Site

http://www.aids.edu

The new Johns Hopkins AIDS site is one of the best organized of the AIDS Web sites, and is likely to be one of the most useful for medical professionals. It includes:

* Medical Management of HIV Infection, 1997 Edition, by John G. Bartlett, M.D.
This document, 300 pages when printed in book form, is the AIDS standard of care at Johns Hopkins. It is divided into seven sections (Natural History; Laboratory Tests; Disease Prevention; Antiretroviral Therapy; Opportunistic Infections; Guide to Drugs; and Systems Review), each on a separate Web page for convenient viewing or printing. This online document is updated monthly.

* Case Rounds. Two cases are now discussed online, more will be added.

* Outcomes Research. Currently there are seven articles in this section, from cost effectiveness of antiretroviral therapy, to adherence, to managed care.

* AIDS Epidemiology.

* HIV Women's Issues.

* Information about the Johns Hopkins AIDS Services -- and its ongoing clinical trials.

* 7th Annual Clinical Care of the Patient with HIV Infection Conference. Unfortunately only two lectures are available as this issue goes to press -- and they can only be heard with special software from Microsoft, which can be downloaded but at this time runs only on Windows 95. Otherwise, all you can do is see the slides.

* A calendar of events and conferences.

* Links to other sites, including government guidelines, other U.S. government AIDS-related sites, major journals, newspapers and wire services, HIV/AIDS hotlines, and other HIV/AIDS sites.

When you first get to this site, you will see a column of buttons on the left of the screen, which are links to major areas of this site, including most of those listed above. If you do not immediately see what you want, use the "Table of Contents" button to get to the site index, which provides more complete information about exactly what is available -- with links to individual articles, cases, listings, programs, or other subcategories.

* HIV InSite (University of California AIDS Web site)

http://hivinsite.ucsf.edu (do not type www in this address)

This University of California site covers various aspects of AIDS, not only treatment related. Its medical sections include:

* The AIDS Knowledge Base, a 1600-page textbook, with the latest updates on the site;

* A searchable database of AIDS clinical trials throughout the U.S., designed to search for trials for a particular patient;

* Treatment guidelines, medical and scientific articles, U.S. and international statistics, etc.

We described this site in more detail in AIDS Treatment News #267.

* AIDS Program at San Francisco General Hospital

http://www.hivinsite.org/

Information about the HIV/AIDS programs and services at the University of California/San Francisco General Hospital medical center, including treatment, research, and education. It includes a directory of the medical staff, listed by name and by specialty.

* JAMA (Journal of the American Medical Association) HIV/AIDS Information Center

http://pubs.ama-assn.org/cgi/collection/hiv_aids

The JAMA site, run by the American Medical Association, provides various practical information to physicians. The HIV/AIDS Information Center on this site is divided into sections including:

* Journal Scan, consists of certain articles about HIV disease which have been published in medical journals, selected as particularly important for educating physicians who may not be HIV specialists. Full text is available, including graphics.

* Free access to four databases of the National Library of Medicine: AIDSLINE, AIDSTRIALS,
AIDSDRUGS, and BIOETHICSLINE. (We will describe the National Library of Medicine databases later in a separate article.)

* The site is developing a service to allow medical professionals to email HIV treatment questions to a panel of experts; the answers will then be published on the site as a "FAQ" ("frequently asked questions," a document listing common questions and their answers). This format has proven widely useful on the Internet as a cost-effective way of providing expert answers to peoples' questions -- for once the FAQ has been developed, most new inquiries will have already been answered and will not need more of the experts' time. Hopefully the FAQ will be available to the general public, even if the chance to ask questions is still reserved for professionals. (There is no issue of confidentiality, since identifying information would be removed from the questions before they are published.)

* A Global Link section has links to AIDS-related Web sites in over 20 countries. Also there are links to U.S. government sites, and academic institutions.

* Healthcare Communications Group

(website no longer available)

Healthcare Communications Group enlists leading HIV experts and medical writers to write detailed summaries of major HIV conference presentations. Often these appear as a one-hour or two-hour CME (continuing medical education) training module for each day of the conference; they are made available on the Web so that anyone can use them. Credit for medical professionals is available for six months, and the conference summaries remain online for at least a year. In addition, Healthcare Communications Group organizes an annual meeting for 400 front-line HIV physicians, and publishes an online and print journal.

HCG can publish online more rapidly than medical journals. For some conferences, overnight summaries are available worldwide the next morning, written by experts who work late into the night and review each other's work; for other meetings, summaries are published within weeks. This material is made available free to anyone through the Web -- and sometimes is the only readily accessible information about a major talk or panel discussion. The work is supported largely by unrestricted educational grants from pharmaceutical companies.

Some of the currently available conference summaries report on the recent resistance meeting (the International Workshop on HIV Drug Resistance, Treatment Strategies, and Eradication, St. Petersburg, Florida, June 25-28 1997), the 1st National AIDS Malignancy Conference (U.S. National Cancer Institute, April 1997), the 4th Conference on Retroviruses and Opportunistic Infections (Washington D.C., January 1997), the XI International Conference on AIDS (Vancouver, July 1996), and Healthcare Communications Group's 7th Annual Symposium, a three-day meeting for front-line HIV physicians (May 1997).

Other information available includes:

* Nutrition and Wasting in HIV, a new online CME course authored by Donald P. Kotler, M.D., June 1997.

* Seropositive Patient -- Initial Encounter, updated in May 1997.

* The new government documents on the principles of HIV therapy, and antiretroviral treatment guidelines, converted by Healthcare Communications Group so that they can be read directly on the World Wide Web, without a special download step.

* Healthcare Communications Group has also started an online journal, HIV Journal, on its site. Medical professionals can obtain a print version of the journal by calling Medical Education Collaborative, 800/442-6632.

* International Association of Physicians in AIDS Care

http://www.iapac.org

This site includes articles from the Journal of the International Association of Physicians in AIDS Care,and much additional AIDS information directed both to professionals and to the public. It includes:

* Highlights from many conferences, both as journal articles and as additional online reports;

* A section on women's health issues;

* A section on pediatrics;

* A nutrition page;

* Information in Spanish, Portuguese, and Italian.

* National Library of Medicine

http://www.nlm.nih.gov

Free access to AIDSLINE and MEDLINE databases, as well as to other information services and publications offered by the world's largest medical library.

* Adult AIDS Clinical Trials Group

http://aactg.s-3.com

Information about the Adult ACTG, its key people, meetings, and structure and operations. It includes links to Web sites run by the various medical centers of the ACTG.

* Pediatric AIDS Clinical Trials Group

http://pactg.s-3.com

Information about the Pediatric ACTG, similar to the adult listing above.

* CPCRA (Community Programs For Clinical Research on AIDS)

http://www.cpcra.org

Materials include background information and an overview of programs including clinical trials; CPCRA papers, reports and presentations; and how to locate and contact CPCRA sites.

* National Institute of Allergy and Infectious Diseases

http://www.niaid.nih.gov/default.htm

Note the link to AIDS, under Research Activities.

* National AIDS Treatment Advocacy Project

http://www.natap.org/

In-depth reports focusing on protease inhibitors and other antiretrovirals. Note the July 1997 edition of Protease Inhibitor User's Guide, a 38-page book for patients on adherence, side effects, food, hydration, drug interactions, etc. (not on site as we go to press); medical centers can order bulk copies without charge by calling NATAP at 212/219-0106.

* Protease Inhibitor Response Project;

(website no longer available)

This site, for both physicians and patients, was set up "to gather information from patients who are taking combinations of anti-HIV drugs, especially combinations involving protease inhibitors... We are collecting stories from people who have failed protease inhibitors, or who have had unusual responses to the drugs." Examples of unusual responses: viral load did not drop rapidly after starting combination therapy; viral load rebounded after dropping; or viral load remained high but T-cell counts increased anyway.

This project, started by Rick Loftus, a research associate at Gladstone Institute of Virology and Immunology, includes separate questionnaires for patients using protease inhibitors and for prescribers of the drugs, and also a section on how the information will be used.

* The Access Project

Information on programs to help pay for HIV/AIDS drugs -- a drug by drug list of pharmaceutical company patient assistance programs, state by state information on ADAP programs and Medicaid, and descriptions of expanded access and compassionate use programs.

* Journals and other AIDS-related publications available online

http://www.cdcnpin.org/
http://www.aegis.com/links/pharma-index.asp

These lists lead to Web sites of medical journals and other AIDS-relevant publications which are available on the World Wide Web.

* Vanderbilt University Medical Center HIV AIDS Online Help

http://www.mc.vanderbilt.edu/root/vumc.php?site=cfar

This specialized service allows persons to ask about how to research particular questions about AIDS. Information specialists answer the questions by email.

* Pharmaceutical company sites

http://www.aegis.com/links/pharma-index.asp

Links to corporate Web sites of over 15 companies involved in AIDS.

* The Merck Manual
http://www.merck.com

The Merck corporate site includes a link to a searchable online version of this well-known medical reference.

* ScienceXchange

Immunology conferences' searchable abstracts, links, other information. Most immunology conferences have little focus on HIV or AIDS, where research has been dominated by virology. The AIDS community needs to work toward overcoming this separation.

Here are Web addresses for abstracts and reports from recent AIDS conferences and meetings.

* International Workshop on HIV Drug Resistance, Treatment Strategies and Eradication, June 25-28, 1997, St. Petersburg, Florida

Report by William A. O'Brien, M.D.;

Report by Steven G. Deeks, M.D.;
http://hivinsite.ucsf.edu

Others are being prepared.

We have not seen the abstracts of this resistance workshop online, as of July 12, but above detailed reports are available. The one by O'Brien is somewhat less technical and may be best to read first.

* 7th Annual Clinical Care Options for HIV Symposium, May 29-June 1, 1997, Laguna Niguel, California

Summaries of major talks given at the meeting.

* National Conference on Women and HIV, May 4-7, 1997, Los Angeles

(website no longer available)

Program and daily highlights. The conference abstracts can be browsed or searched on:

http://www.iapac.org

* 1st National AIDS Malignancy Conference, April 28-30, 1997, Bethesda, Maryland

Program; searchable abstracts; daily summaries. Up to six hours of CME credit is available.

* Second International Conference on Nutrition and HIV Infection, April 23-25, 1997, Cannes

(Website no longer available)

Program, abstracts, and index to abstracts.

* 4th Conference on Retroviruses and Opportunistic Infections, January 22-26, 1997, Washington, D.C.

http://www.retroconference.org

Searchable abstracts; Selected lectures (voice and slides) -- special software.

Unofficial summaries and reports prepared at the time of this conference are available at:
http//www.healthcg.com/cme.html
http://www.iapac.org, under "Conference Reports"

* XI International Conference on AIDS, July 7-12, 1996, Vancouver

http://sis.nlm.nih.gov/HIV/HIVMain.html

Abstracts, searchable by keyword, title, and/or author.

* Oxidative Stress and Redox Regulation, May 21-24, 1996, Institut Pasteur, Paris

http://www.immunet.org

Program and searchable abstracts.

Here are Web sites for information about future conferences.

* Infectious Diseases Society of America, annual meeting, September 12-16, 1997, San Francisco

http://www.idsociety.org

This site includes a preliminary program and general information for the IDSA annual meeting in San Francisco, apparently not including registration information. Several sessions are HIV-related. There is also a guide for abstract submission (late breaker abstracts must be received on forms provided by August 15).

* 37th ICAAC (Interscience Conference on Antimicrobial Agents and Chemotherapy), September 28 - October 1, 1997, Toronto

http://www.asm.org

Complete program, meeting arrangements, registration information. The keynote talk and a number of the slide and poster sessions concern AIDS. (Our experience has been that ICAAC has more valuable AIDS-related information in odd-numbered years, when the international AIDS conference is not scheduled.

Abstracts may be submitted through the site, or by email, or on paper (late breaker deadline, September 5).

* First International Conference on Healthcare Resource Allocation for HIV/AIDS and Other Life-Threatening Illnesses, November 10-11, 1997, Marriott Hotel, Washington, D.C.

http://www.iapac.org

Sponsored by the International Association of Physicians in AIDS Care, cosponsored by AIDS Action Council and Harvard AIDS Institute.

* 12th World AIDS Conference, June 28-July 3, 1998, Geneva

No program is available yet, as the program will be built around the abstracts submitted, and the deadline for abstracts is February 2, 1998.

All information on AIDS.ORG is designed to support, but not replace your relationship with your doctor, and is intended soley for educational or research purposes. Any and all personal information you may provide us with is never released to anyone at any time. Your privacy and trust is extremely important to us.

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