American Foundation for AIDS Research, December 2004
Gretchen Schmelz

On July 8, 1996, a few physicians attending the International AIDS Conference in Vancouver gathered to reflect on what the lifesaving anti-HIV drugs meant for the millions who, by circumstance, would never benefit from them. “Fifteen years ago, we were all in the same boat,” Jonathan Mann told National Public Radio. “Now some are leaving in lifeboats and others are left behind.” The statistics Mann used to illustrate the watershed conference remain accurate a decade later: 93% of the epidemic occurs in poor countries, while most of the resources for prevention and care are spent on the affluent. Information about the disease — and later, how to treat it — accompanied those in the lifeboats.

Highly active antiretroviral therapy offered salvation, but the early regimens, which required upwards of 40 pills daily or taking doses precisely 8 hours apart, created a need for treatment information. As regimens simplified, patients’ information needs have changed. Now as some people remain on antiretrovirals for a decade or longer, the burden of chronic therapy requiring superhuman commitment is becoming heavier. Taking medication that, at its most basic level, interferes with the exquisite mechanisms of replicating DNA and prevents proteins from doing their job inconveniences some and wreaks havoc on others. Therapy recipients may encounter painful neuropathy, avascular necrosis, metabolic disturbances, or disfigurement. Activists increasingly demand more collaboration from drug companies to determine interactions among competing drugs early in development. Understanding and treating these unforeseen conditions became the new “information need,” as managing long-term side effects has become the order of the day.

In 1986, John James began AIDS Treatment News, filling a knowledge vacuum that existed at the time. According to James, there was “almost nothing” on the topic except Project Inform’s newsletter and amfAR’s resource manual. Then in the early nineties, as protease inhibitors were winding their way through clinical trials, treatment information was also experiencing an extraordinary phase of development. Early HIV/AIDS news providers began posting whatever they knew on electronic bulletin boards. By 1995 a dozen websites dedicated sections to HIV/AIDS, according to Mary Elizabeth, founder and director of AEGiS, one of the oldest, most voluminous HIV/AIDS websites.

The press and the Internet delivered information — and lots of it. By 1999, an article in the newsletter Positively Aware suggested that information overload caused some patients to “leave all their treatment decisions to their doctors and simply do as they are told.” The number of print newsletters increased exponentially each decade. Sue Pattyn, publisher of the 850-page HIV/AIDS Resources: A Nationwide Directory, estimated that 200 newsletters now offer treatment information in the US. The National Library of Medicine and the Journal of the American Medical Association attempted to advise users on where to turn for reliable HIV/AIDS treatment information online; the publications recommended 65 sites and 39 electronic newsletters as places to start based on quality and “uniqueness.”

“There is so much information in the form of journals, conferences, and news releases, it’s impossible for anyone to keep up,” said James.

Doctors have also felt the crushing weight of too much information, calling it “a disturbing trend.” Muir Gray, director of research and development at the National Health Service in the UK, wrote in a letter to the British Medical Journal: “‘Push technology’ to disseminate information has magnified the problem of unwanted information, and busy clinicians are now caught in an information paradox — overwhelmed with information but unable to find the knowledge they need, when they need it.”

e-Formation Trumps Paper

For those who have limited or no computer access and skills, print is the obvious format of choice. In the US, printed material is still more popular than the Internet. (Two peer-reviewed studies report that the number of people seeking health information online is an exaggerated 50%, and most doctors still prefer print.) But for information providers, costs incurred for printing, distributing, and archiving material far surpass the expense of posting online. Even James understands the limitations of traditional formats. “We need to spend money to get more people online instead of trying to get printed material out there.” He cites the AIDS service organization Philadelphia Fight (which houses James) as an example. The ASO’s library contains 15 computer terminals that are “always in use.”

But the unprecedented volume and speed of online health information does not imply better information than more traditional formats. Alternatively, it does not imply poorer quality. The formlessness of cyberspace trusts the user to contextualize, filter, and evaluate the information he or she encounters — a time-consuming, challenging task. These problems also affect e-health experts, who cannot even agree on operational definitions of “accuracy” and “thoroughness” when judging online health content. Attempts to establish standards have been ongoing for 5 years, with groups such as the American Medical Association and the World Health Organization demanding guidelines and e-health evaluators.

Fast, abundant information also does not guarantee material that is accessible and digestible by all. In the US, people living in poverty face limited access because they are less likely to own a personal computer, according to the 2001 Residential Energy Consumption Survey. But even those who use computers are not ensured a supply of relevant information. Public think tank Rand Health reported that simple search engines are not efficient — they yield relevant results less than 25% of the time. When you do find the information you are looking for, you need a high school education to read it.

And so another consideration is literacy. In a distressing report, the Institute of Medicine and the Agency for Healthcare Research and Quality found that 90 million Americans have inadequate health literacy skills. The Internet does not accommodate those with low reading levels. The investigators concluded, “Information on the Web needs to be made more readable if the Internet is to serve across different socioeconomic backgrounds.” Such treatment literacy issues are of particular concern for poor African Americans and Hispanics with low literacy levels and disproportionately higher rates of HIV (see “The More You Know, the Healthier You Are” in this issue).

Information poverty has even greater effects abroad, in that health care delivery is routinely compromised in countries that need it most. Fiona Godlee, head of BMJ Knowledge in the UK, argues that despite the information explosion, there is no evidence that doctors in the developing world are more informed than 10 years ago. Stark realities such as intermittent power outages, slow Internet connections, and impoverished medical libraries impede up-to-date information. Moreover, the English language dominates software and online content. Chris Green, an AIDS activist in Jakarta, has been advocating for HIV/AIDS health information in local languages for more than 10 years. “In much of the developed world, there is a misconception that there are only a handful of major languages that need to be considered. But 220 million people speak Indonesian — and few [of them] speak any of the major world languages,” said Green.

Global Responses

Studies show medical information is critical for delivering and receiving good health care. In response to reports that many Americans cannot understand basic medical instructions, the American Medical Association is convening this winter to discuss how to improve health literacy in US clinics. The American Medical Association and the WHO have called for guidelines and e-health evaluators to ensure quality content. BioMed Central and SATELLIFE are two sites that flow health information from developed to developing nations and back again.

Treatment preparedness — HIV/AIDS treatment education and advocacy efforts to heighten access to and safe use of anti-HIV drugs — has also gained momentum. As a follow-up to the first International Treatment Preparedness Summit held in Cape Town in March 2003, a regional workshop is gathering in Nepal in November. Other initiatives are also under way to educate people at local and regional levels about HIV/AIDS treatments. Godlee has proposed that the WHO spearhead universal access to essential health care information for all (with an emphasis on caregivers) by 2015. She recommends improving regional libraries; improving Internet connectivity; addressing why people balk at changing certain practices despite evidence that they should; and improving the reliability, relevance, and usability of content. This past summer the WHO launched the Global Review of Access to Health Information for All, and a late-November summit in Mexico will convene to further address these issues.

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Copyright © 2004 by the American Foundation for AIDS Research (amfAR) and first displayed on amfAR's Treatment Directory web site (http://www.amfar.org/gl). They appear on AEGIS with amfAR's permission. Organizations wishing to reprint or redistribute these materials should request authorization from amfAR's Department of Treatment Information Services (212/806-1600).

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