HIV/AIDS: Patients To Swap Treatment Tips On-Line
The Treatment Data Project, a Web site featuring AIDS patients' experiences with treatments, begins today, despite concerns over medical privacy and accuracy, USA Today reports. The data, submitted voluntarily via questionnaires, may prove useful as patients trade stories of treatment successes and failures, including toxicity. "Perhaps one can learn something about toxicity of drugs that you might not learn from a smaller trial," said NIAID Director Dr. Anthony Fauci. "This could work for any illness where people take different medications and there isn't a standard of therapy that you know works," said AIDS activist Larry Kramer, who initiated the project. AIDS patients wishing to participate will complete surveys at two test sites in New York and one in California. Project leader Sherrie Kaplan of the Tufts University School of Medicine in Boston will review the data, and publication on-line via WebMD is expected within a year. Ernest Hopkins, a San Francisco AIDS Foundation policy expert, supports the project but said that "patients should be informed about the risks": "It's breaking new ground about providing very sensitive medical information on the Web," he said, adding, "And while it may be true that self-reported data on side effects may get out to people quicker than that from a clinical trial, it's also possibly not as accurate." The project, which will cost $2.5 billion, is being financed by the American Association of Health Plans and Lotus Software Development, which developed the software (Appleby, 6/21).This is part of the California Healthline Daily Edition, a summary of health policy coverage from major news organizations. Sign up for an email subscription.