Advice from a medical expert on concerns and queries expressed anonymously through the Internet by patients and later posted on the Web, offers a new type of patient–doctor relationship. The aim of the current study was to perform a descriptive analysis of questions about AIDS and hepatitis made to an infectious disease expert and sent through the Internet to a consumer-oriented Web site in the Spanish language.
Methods and Findings
Questions were e-mailed and the questions and answers were posted anonymously in the “expert-advice” section of a Web site focused on AIDS and hepatitis. We performed a descriptive study and a temporal analysis of the questions received in the first 12 months after the launch of the site. A total of 899 questions were received from December 2003 to November 2004, with a marked linear growth pattern. Questions originated in Spain in 68% of cases and 32% came from Latin America (the Caribbean, Central America, and South America). Eighty percent of the senders were male. Most of the questions concerned HIV infection (79%) with many fewer on hepatitis (17%)
. The highest numbers of questions were submitted just after the weekend (37% of questions were made on Mondays and Tuesdays). Risk factors for contracting HIV infection were the most frequent concern (69%), followed by the window period for detection (12.6%), laboratory results (5.9%), symptoms (4.7%), diagnosis (2.7%), and treatment (2.2%).
Our results confirm a great demand for this type of “ask-the-expert” Internet service, at least for AIDS and hepatitis. Factors such as anonymity, free access, and immediate answers have been key factors in its success.
Although substantial progress has been made in the fight against HIV/AIDS, in terms of developing new treatments and understanding factors that cause the disease to worsen, putting this knowledge into practice can be difficult. Two main barriers exist that can prevent individuals seeking information or treatment. The first is the considerable social stigma still associated with HIV; the second is the poverty of the developing countries—such as those in Latin America—where the disease has reached pandemic proportions. In addition, the disease, which used to be spread mainly through the sharing of injecting drug needles or through sex between men, has now entered the general population. When healthcare services are limited, people are often unable to seek information about HIV, and even when services do exist, the cost of accessing them can be too high. The same is true for other diseases such as hepatitis infection, which often co-exists with HIV. The Internet has the potential to go some way to filling this health information gap. And, many patients seek information on the Internet before consulting their doctor.
Why Was This Study Done?
In 2003, the Madrid-based newspaper
El Mundo launched an HIV and hepatitis information resource situated in the health section of its existing Web site. One aspect of this resource was an “ask-the-expert” section, in which readers could anonymously e-mail questions about HIV and hepatitis that would be answered by an infectious disease expert. These ranged from how the diseases can be transmitted and who is most at risk, to what to do if an individual thinks they might have the disease. There seems to be a clear need for this Spanish-language service; in Latin America, 2.1 million people are infected with HIV, with 230,000 new cases in 2005. In the Caribbean, AIDS is the leading cause of death in people aged 15–44 years. In Spain, 71,000 people were infected with HIV in 2005. Although the Internet contains a vast store of health information, and many aspects of patient–doctor interactions have been made electronic, little is known about what format is ideal. The researchers, who included employees of the newspaper, decided to investigate the effectiveness of the question–answer format used by
What Did the Researchers Do and Find?
In the first 12 months after the service was launched, the researchers recorded several details: what day of the week questions were sent, what the questions were about, and whether they were sent by the person needing the information or by a family member or friend. They also noted demographic information, such as the age, sex, and country of origin of the person e-mailing the question.
Of 899 questions sent to the Web site between December 2003 and November 2004, most (80%) were sent by males. Most questions came from Spain, followed by Latin America, and most questions were sent on Mondays and Tuesdays. Some e-mails were from people who felt they had been waiting too long for an answer to their first e-mail—despite the mean time for answering a question being fewer than seven days. Messages of support for the Web site rose during the year from 2% to 22%.
What Do These Findings Mean?
The messages of support and encouragement sent in by users indicated that the service was well-received and useful. Most of the questions were about HIV rather than about hepatitis, which the researchers say could represent the more prominent media coverage of HIV. However, despite the disease's high profile, the questions about HIV were very basic. It could also mean that people hold a false impression that hepatitis is a less serious illness or that they have more information about it than about HIV.
Since most questions were sent in at the start of the week, the researchers believe that many individuals wrote in after engaging in potentially risky sexual behaviour over the weekend.
The researchers also found that existing information on the Web site already answered many of the new questions, indicating that people prefer a question-and-answer model over ready-prepared information. The anonymity, free access, and immediacy of the Internet-based service suggest this could be a model for providing other types of health information.
The findings also suggest that such a service can highlight the needs and concerns of specific populations and can help health planners and policymakers respond to those needs in their countries.
Please access these Web sites via the online version of this summary at
AIDSinfo Web site from the US Department of Health and Human Services provides information on all aspects of HIV/AIDS treatment and prevention and has sections specially written for patients and the general public
• AVERT, an international AIDS charity, has a section on
HIV in Latin America that includes details of transmission, infection rates, and treatment
Marco and colleagues analyzed questions sent by the public to a Spanish language "ask-the-expert" Internet site, and found that 70% of queries were about risk factors for acquiring HIV.