AIDS Treatment Fact Sheets: Interview with Bob Munk, New Mexico AIDS InfoNet.

In the three years since it started, the New Mexico AIDS InfoNet has become widely recognized as perhaps the best overall collection of single-page fact sheets on AIDS treatment information. It now maintains over 100 of them, each in English and Spanish. Topics include background on HIV and AIDS, blood tests and what they mean, using HIV/AIDS services, all approved antiretroviral treatments, many opportunistic infections and their therapies, alternative/complementary treatments, a separate section on treatment side effects, and HIV prevention. All are in non-technical language, and all are available on the Web (http://www.aidsinfonet.org) plus two printable formats for clients who may not have computer access. As with other fact sheets, each one can be read separately as needed; they do not need to be used in any sequence.

While this project was specifically designed to meet the needs of clients of AIDS service organizations in New Mexico, it has a national and international constituency as well, with currently about half of the Web use coming from outside the United States. It also provides a model for presenting certain kinds of information effectively, either online or off.

Bob Munk, a well-known AIDS activist, started this project and has written most of the material. AIDS Treatment News interviewed him on December 23, 2000.

Interview with Bob Munk, New Mexico AIDS InfoNet

JSJ: Why did you first decide to write your own fact sheets, instead of using existing ones?

Munk: We had to meet specific needs of clients in New Mexico. It is a large and very rural state, so most clients tend to be far away from AIDS service organizations. And it was hard to get information in Spanish, which many prefer because it is their native language.

We looked at existing fact sheets to see if they could meet our needs. There were some good ones, but any particular set had deficiencies. Most had a very limited range of topics; most had no information at all about any alternative or complementary therapies, which are of serious interest to many clients in New Mexico.

Many were badly out of date--for example, a saquinavir fact sheet in 1998 that said that saquinavir was the only approved protease inhibitor, or a CMV fact sheet that did not mention the existence of the intravitreal implants. Others had a reading level that was too complex; on the Flesch-Kincaid reading scale they came out at the 11th or 12th grade level. [For writers who want to test their own documents, FleschKincaid software is available within the spelling checker of recent versions of Microsoft WORD.]

Another problem with some of the sites is that they might issue multiple reports oh a single topic--such as an initial writeup, and then later an update when a new treatment was approved. So the user had to be able to go to their Web site and identify the different pieces and put them together, first reading the obsolete report and then the updates.

In consultation with front-line people--the case managers of the AIDS service organizations in New Mexico--we agreed to aim for an 8th grade reading level in a single-page (one side) fact sheet. We don't consider 8th grade level "low literacy." But we have heard from our case managers that when they have a low-literacy client, if they have an opportunity to sit down and discuss the information, the fact sheet works as a memory aid to help the client remember the discussion. The case managers believe that 8th grade is a useful reading level. I'm not aware of other fact sheets written at the same or lower level. The U.S. Centers for Disease Control has some booklets that they consider low literacy, but I find them almost insulting; I don't know how well low-literacy clients receive them.

It's totally appropriate to have a wide range of reading levels, including material that is much more complex or technical. But service organizations need to be aware of the range of resources available and try to match them to the client. There is nothing wrong with a more technical writeup, as long as the client can digest it. And there is no reason that everyone with HIV should have a comfortable familiarity with complex medical terminology.

When we realized there was no set of fact sheets we could just pick up and use, that we would have to develop our own, we worked with the case managers to determine the higher priority topics--which were basic diagnostic tests, HIV medications, and opportunistic infections.

We also did a survey of New Mexico HIV service providers and clients. We found that only about 40% of AIDS service providers had access to the Internet; clearly the figure for clients would be lower than that. So we knew from the outset that we had to structure the project for hard-copy printout. In working with our advisory board we came up with the format we use: a single sheet with three columns of text, which is the most readable and user friendly.

Fact Sheets Available Now

JSJ: Recently I counted 114 fact sheets on your site. Could you summarize the main categories for our readers?

Munk: In the Background Information section we have 11 fact sheets, including what is AIDS, HIV antibody testing, several fact sheets on understanding your lab results, and one on the drug approval process. The web site Background section also has several links on AIDS epidemiology and statistics.

We have five fact sheets on prevention topics, including post-exposure prophylaxis [what to do if you have just been exposed to HIV].

A section on HIV services includes how to begin, choosing a doctor, telling others you are HIV positive, participating in a clinical trial, and how to spot HIV/AIDS fraud.

There are 12 sheets on New Mexico programs--the only ones which are specific to New Mexico--and the Web site has links to four Federal programs.

Antiretroviral drugs are covered in several sections. A general category includes several fact sheets on new drugs being developed, a chart of drug names and manufacturers, official treatment guidelines (it will need to be changed when the new guidelines are released in January), T-cell tests, viral load tests, resistance tests, the HIV life cycle, adherence (compliance), and treatment interruptions.

There are also fact sheets on each of the 15 antiretroviral drugs now approved in the U.S. These are categorized by drug class: nucleoside analogs, nonnucleoside reverse transcriptase inhibitors, and protease inhibitors. (There are also fact sheets for Combivir and Trizivir, which combine two or three approved antiretrovirals in one pill, to reduce the number of pills that must be taken each day.)

The "Treatment: Opportunistic Infections" has 24 fact sheets covering many of the most common opportunistic infections, and some of the drugs used to treat them.

We have a new section on treatment side effects, including fatigue, body shape changes, diarrhea, mitochondrial toxicity, and bone problems.

A "Treatment: Special Topics" section currently has eight fact sheets on nutrition, vitamins and minerals, drug interactions, women and HIV, pregnancy and HIV, immune restoration, hydroxyurea, and interleukin-2 (IL-2).

And the alternative and complementary section has an overview, Chinese acupuncture, Chinese herbalism, Native American traditional healing, cat's claw, DHEA, DNCB, echinacea, essiac, hypericin (St. John's Wort), marijuana, and silymarin (milk thistle). More will be added.

Our site also includes a huge collection of links to HIV/AIDS Web sites, over 500 of them by categories. We do not evaluate or describe these sites, but each month we verify that each one still exists.

JSJ: Where do you get the information for the fact sheets?

Munk: I scan the email lists, such as AEGIS (http://www.aegis.org), the daily CDC HIV/STD/TB Prevention News Update (available through AEGIS, or at http://www.cdcnpin.org/services/listserv.htm), and treatment discussion groups, and attend AIDS treatment conferences. When there is news important enough to go into a one-page sheet, I revise ours if necessary.

What Should Be in a Fact Sheet or Web Page?

JSJ: What do you believe should be included in each fact sheet or Web page?

Munk: There are different Internet guides to creating good material. Some ideas of what should be on Web sites are fairly consistent.

* There should be a way to find out who is writing the material, and what are the sources. Our Site has information about me, and about the AIDS Education and Training Center, where our project is based.

* A site should state whether the material is reviewed by somebody. Is it just posted, or checked by experts first?

* Each page should have a date on it. Ideally it will be clear whether that was the date the material was originally written, the date it was posted, or the date it was last reviewed and/or updated. Often there is no date; sometimes you just get a date on a page, and do not know which it represents.

* For HIV treatment information, the Web site ought to disclose the sponsorship or source of funding for the project. Readers should know whether a site is sponsored by pharmaceutical companies or a single company. On my site I do not list specific percentages, but we have governmental funding and corporate funding, and the corporate funding is from many different firms. If I were looking at a treatment site, I would feel more comfortable if it had many sponsors than if it had a single corporate sponsor.

* It helps to have an introductory page stating the purpose of the Web site. If it's in conjunction with a commercial venture, that's good to know. If it's educational, that's also worth knowing.

* A site should be easy to navigate. People should be able to get in, get what they want, and get out, quickly. And particularly in a rural area, many people do not have high-speed access; our site is deliberately not flashy; it has low graphic content, so pages load quickly.

* None of our pages is terribly long. And we break each page into sections, and group the section headers at the top of each page. So as soon as the screen appears, the reader knows what's below on that page.

* And to make use of the capabilities of the Internet, we try to cross-link our fact sheets as much as possible. If a fact sheet on antiretroviral therapy talks about T-cell counts, T-cell count wording will be linked to the fact sheet on T-cell tests. If it talks about viral load, it will link to the viral load fact sheet. If it talks about specific drugs we have fact sheets on, it will link to those fact sheets.

* Mechanism for feedback: Is there a way to contact the site to make comments or ask questions? We have that on each page.

* Each Web site should have a privacy statement. Ours states that the logging software records each visit (including what country you are from, what browser you are using, and which pages you visit) but does not link this information to an individual person.

I also have an email update mechanism so that people who want to be informed of changes get a monthly email from me, saying what has been changed on the site, so they can go to the Web and get the new version. If people send me their email address for this list, I do not disclose it to anybody at any time for any purpose.

When people use a search engine to look for a particular topic, they may come into a site several levels down in its hierarchy. So Web users need to educate themselves about trying to find the main page for the site. For treatment information, people need to figure out which sites they trust. So if you use a search engine and come upon a fact sheet you like, try to find the main entry page of the Web site, and educate yourself about the stated purpose of the site, who reviews the material, who sponsors it, and so on.

JSJ: It's a good idea to have a link to the main page, at the bottom of every page of the site.

Munk: We have just put that in.

For more information on how to judge medical Web sites, see Criteria for Assessing the Quality of Health Information on the Internet, a work in progress, currently 55 pages, at: http://hitiweb.mitretek.org/docs/criteria.html

The New Mexico AIDS InfoNet

JSJ: How did the New Mexico AIDS InfoNet begin?

Munk: Within New Mexico the HIV/AIDS services are organized in a managed-care type of model. There are four primary agencies that serve the entire state. So if we could make sure that those four agencies (and particularly the case managers of those agencies) had Internet access, and knew how to reach treatment information in a form they could readily print it out and distribute to clients, we would have a useful resource.

What seemed ideal was to use the Internet not only as a way of delivering information to the end user, but to leverage the delivery of information, since the Internet is an ideal way to update information quickly, and make it available to people spread over a large area. From the beginning we wanted have the material in a form that could be printed off the Internet by agencies, and given to clients. Currently our materials are used in this way by a number of AIDS service organizations and clinics.

The New Mexico AIDS InfoNet started in 1997, when the state director of HIV/AIDS services noticed an announcement for a National Library of Medicine grant for electronic information. A group of us then met about the needs in New Mexico. Our first application was turned down. But I decided to go ahead and start the project anyway, because it seemed that it would have huge advantages for New Mexico.

The project began in a statewide, state-funded services planning agency. That agency lost its major contract at the middle of 1998, so then the AIDS InfoNet project moved over and affiliated with the AIDS Education and Training Center at the University of New Mexico (a satellite of the Mountain Plains AETC out of Denver). I attached the project to them, so it's not a separate 501(c)3. We do not get financial support from the university. We get a certain amount of support from the National Library of Medicine; we went back the following year and were successful, and have been funded twice more by them. We also have a contract with the New Mexico Department of Health; and in addition we get a fair amount of support from pharmaceutical companies.

Our first home on the Internet was University of California San Francisco's HIV InSite (http://hivinsite.ucsf.edu/); they hosted our materials until we could set up our own Web site. We launched ours on January 1 1998, and have maintained it since then.

From the beginning of our Web site, each document was created in three formats: a Web page (HTML); a Microsoft Word document, and Adobe Acrobat format (.pdf). So persons with either Microsoft Word or Adobe Acrobat could print the fact sheets in their original format.

To make our own operation more efficient we do not provide hard copy. There are a few special circumstances, for example if someone is incarcerated and has no other access. We may first try to identify a local AIDS service organization, and make sure that they know about the New Mexico AIDS InfoNet, and how to download and print our fact sheets--and that a potential client needs them.

We have also made our materials available at no charge through other HIV/AIDS Web sites, including AEGIS, AIDS.org/Immunet, The Body, Medscape, the National Minority AIDS Council, and University of California San Francisco's HIV InSite.

JSJ: I'm impressed that you cover mainstream/pharmaceutical, nutritional, and alternative/complementary treatments in the same context.

Munk: Our advisory group felt strongly about that. Everybody knows that many people with HIV and AIDS are looking to alternative and complementary therapies as part of their program. Yet almost all sites providing AIDS treatment information--unless they were strictly focused on alternative and complementary--made people go to different sources to get information on Western approaches, and on alternative/complementary approaches. We thought there was no reason for that; if we could build trust and credibility for a source of treatment information, why not also provide information on alternative and complementary topics along with the mainstream ones?

Clearly we are not cheerleaders for any of the herbal substances, etc.; we take a research-based approach in what we put in the fact sheets. And they are reviewed by the Physician Administrator of the Infectious Disease Bureau of the New Mexico Department of Health. So we do not praise something like Cats Claw or Essiac, when there is no research to support it. We try to put out a balanced fact sheet, that says this is what has been researched, this is what people are saying but it has not been supported by research, and these are the downsides that people are talking about as potential adverse effects, or that have been documented in clinical research.

JSJ: When you look at anything on the Web, you realize it's there for a reason. And then the question is, what reason? And with many alternative sites, you have no way of knowing if the reason is one you can trust. Is it only that somebody wants to make money? Or that someone is a fanatic for a particular remedy? This is true for mainstream sites as well, but at least there are more checks and balances.

Munk: With many of the alternative/complementary treatments, especially the supplements, often the only place you can get information is somebody who is tiying to sell you the product. DAAIR (Direct Access Alternative Information Resources, http://www.daair.org) does a very good job providing information.

International Use

JSJ: What international interest are you finding?

Munk: About 50% of our Web site visits are from outside the U.S. That's something we did not expect. It's a huge bonus with the Internet--once you put information there, people can use it from around the world. The primary access from outside the U.S. has very consistently been from Mexico, Peru, Argentina, Spain, and the UK.

People often ask is which version of Spanish we use. The fact sheets are written in English and translated into Spanish. They get a final edit by a native Spanish speaker from Northern Mexico. People from other Spanish-speaking countries have told us that while there may be some differences in usage here and there, they basically have no problems understanding the concepts.

JSJ: Perhaps the focus on simple language helps.

Munk: Actually that cuts the opposite way. If you are using technical language, the words are identical all over the world; with scientific terminology there is no regional variation. And often with non-technical language I am using colloquial wording, which is more susceptible to regional differences. But it has not proved to be a problem. I have not had any complaints; and people have, requested the updates from Spain, Peru, Argentina, and other countries.